The Official Patient's Sourcebook on Chronic Fatigue Syndrome

Citation preview

THE OFFICIAL PATIENT’S SOURCEBOOK

on

HRONIC ATIGUE YNDROME J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS

ii

ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1

Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Chronic Fatigue Syndrome: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-82980-2 1. Chronic Fatigue Syndrome-Popular works. I. Title.

iii

Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.

Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: [email protected]). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook.

iv

Dedication To the healthcare professionals dedicating their time and efforts to the study of chronic fatigue syndrome.

Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to chronic fatigue syndrome. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.

v

About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.

vi

About ICON Health Publications In addition to chronic fatigue syndrome, Official Patient’s Sourcebooks are available for the following related topics: ·

The Official Patient's Sourcebook on Adenoviruses

·

The Official Patient's Sourcebook on Arenaviridae

·

The Official Patient's Sourcebook on Ebola Hemorrhagic Fever

·

The Official Patient's Sourcebook on Filoviruses

·

The Official Patient's Sourcebook on Hantavirus

·

The Official Patient's Sourcebook on Human Ehrlichiosis

·

The Official Patient's Sourcebook on Human Parainfluenza Viruses

·

The Official Patient's Sourcebook on Influenza Viruses

·

The Official Patient's Sourcebook on Lassa Fever

·

The Official Patient's Sourcebook on Lymphocytic Choriomeningitis

·

The Official Patient's Sourcebook on Marburg Hemorrhagic Fever

·

The Official Patient's Sourcebook on Q Fever

·

The Official Patient's Sourcebook on Rabies

·

The Official Patient's Sourcebook on Respiratory Syncytial Virus

·

The Official Patient's Sourcebook on Rift Valley Fever

·

The Official Patient's Sourcebook on Rocky Mountain Spotted Fever

·

The Official Patient's Sourcebook on Rotavirus

·

The Official Patient's Sourcebook on Viral Hemorrhagic Fevers

To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health

Contents vii

Table of Contents INTRODUCTION...................................................................................... 1

Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4

PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON CHRONIC FATIGUE SYNDROME: GUIDELINES ........................................................................................... 9

Overview............................................................................................................... 9 What Is Chronic Fatigue Syndrome? ................................................................. 10 Demographics ..................................................................................................... 12 Clinical Course of CFS ....................................................................................... 14 Possible Causes of CFS ....................................................................................... 15 How Physicians Diagnose CFS .......................................................................... 18 Careful Consideration of Information about CFS .............................................. 20 Treatment............................................................................................................ 20 Non-Pharmacologic Therapy .............................................................................. 21 Pharmacologic Therapy ...................................................................................... 22 CFS Support Groups .......................................................................................... 25 CFS Case Definition ........................................................................................... 26 Complete Text of Revised Case Definition ......................................................... 29 Issues in Chronic Fatigue Syndrome Research .................................................. 30 A Conceptual Framework for Studying Chronic Fatigue Syndrome................. 30 Clinical Evaluation of Prolonged Fatigue and Chronic Fatigue ........................ 34 Major Classification Categories: Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue .................................................................................................. 36 Screening Tests for Detecting Common Exclusionary Conditions.................... 41 Example of a Clinical Scenario Requiring Further Laboratory Testing............. 44 Experimental Tests That Should Not Be Used for the Clinical Diagnosis of CFS ............................................................................................................................ 44 For More Information......................................................................................... 47 More Guideline Sources ..................................................................................... 48 Vocabulary Builder............................................................................................. 54

CHAPTER 2. SEEKING GUIDANCE ....................................................... 67

Overview............................................................................................................. 67 Associations and Chronic Fatigue Syndrome .................................................... 67 Finding More Associations................................................................................. 72 Finding Doctors.................................................................................................. 74 Selecting Your Doctor ........................................................................................ 75 Working with Your Doctor ................................................................................ 76

viii Contents

Broader Health-Related Resources ..................................................................... 77 Vocabulary Builder............................................................................................. 77

CHAPTER 3. CLINICAL TRIALS AND CHRONIC FATIGUE SYNDROME 79

Overview............................................................................................................. 79 Recent Trials on Chronic Fatigue Syndrome ..................................................... 82 Benefits and Risks............................................................................................... 84 Keeping Current on Clinical Trials.................................................................... 87 General References.............................................................................................. 88 Vocabulary Builder............................................................................................. 89

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL.................................................. 91 CHAPTER 4. STUDIES ON CHRONIC FATIGUE SYNDROME.................. 93

Overview............................................................................................................. 93 The Combined Health Information Database ..................................................... 93 Federally-Funded Research on Chronic Fatigue Syndrome ............................... 98 E-Journals: PubMed Central ............................................................................ 110 The National Library of Medicine: PubMed .................................................... 111 Vocabulary Builder........................................................................................... 115

CHAPTER 5. PATENTS ON CHRONIC FATIGUE SYNDROME .............. 121

Overview........................................................................................................... 121 Patents on Chronic Fatigue Syndrome............................................................. 122 Patent Applications on Chronic Fatigue Syndrome......................................... 133 Keeping Current ............................................................................................... 135 Vocabulary Builder........................................................................................... 135

CHAPTER 6. BOOKS ON CHRONIC FATIGUE SYNDROME .................. 139

Overview........................................................................................................... 139 Book Summaries: Federal Agencies .................................................................. 139 Book Summaries: Online Booksellers ............................................................... 141 The National Library of Medicine Book Index ................................................. 145 Chapters on Chronic Fatigue Syndrome .......................................................... 149 General Home References ................................................................................. 150 Vocabulary Builder........................................................................................... 150

CHAPTER 7. MULTIMEDIA ON CHRONIC FATIGUE SYNDROME ....... 153

Overview........................................................................................................... 153 Video Recordings .............................................................................................. 153 Bibliography: Multimedia on Chronic Fatigue Syndrome............................... 154 Vocabulary Builder........................................................................................... 155

CHAPTER 8. PERIODICALS AND NEWS ON CHRONIC FATIGUE SYNDROME......................................................................................... 157

Overview........................................................................................................... 157 News Services & Press Releases ....................................................................... 157 Newsletters on Chronic Fatigue Syndrome...................................................... 165

Contents

ix

Newsletter Articles ........................................................................................... 165 Academic Periodicals covering Chronic Fatigue Syndrome............................. 166 Vocabulary Builder........................................................................................... 167

CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 169

Overview........................................................................................................... 169 NIH Guidelines................................................................................................. 169 NIH Databases.................................................................................................. 170 Other Commercial Databases ........................................................................... 175 The Genome Project and Chronic Fatigue Syndrome ...................................... 176 Specialized References....................................................................................... 181 Vocabulary Builder........................................................................................... 182

CHAPTER 10. DISSERTATIONS ON CHRONIC FATIGUE SYNDROME . 183

Overview........................................................................................................... 183 Dissertations on Chronic Fatigue Syndrome ................................................... 183 Keeping Current ............................................................................................... 184 Vocabulary Builder........................................................................................... 184

PART III. APPENDICES .................................................. 185 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 187

Overview........................................................................................................... 187 Your Medications: The Basics .......................................................................... 188 Learning More about Your Medications .......................................................... 190 Commercial Databases...................................................................................... 192 Contraindications and Interactions (Hidden Dangers) ................................... 193 A Final Warning .............................................................................................. 194 General References............................................................................................ 195 Vocabulary Builder........................................................................................... 195

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 197

Overview........................................................................................................... 197 What Is CAM? ................................................................................................. 197 What Are the Domains of Alternative Medicine?............................................ 198 Can Alternatives Affect My Treatment? ......................................................... 201 Finding CAM References on Chronic Fatigue Syndrome................................ 202 Additional Web Resources................................................................................ 213 General References............................................................................................ 219 Vocabulary Builder........................................................................................... 221

APPENDIX C. RESEARCHING NUTRITION ......................................... 223

Overview........................................................................................................... 223 Food and Nutrition: General Principles........................................................... 224 Finding Studies on Chronic Fatigue Syndrome............................................... 228 Federal Resources on Nutrition........................................................................ 232 Additional Web Resources................................................................................ 233 Vocabulary Builder........................................................................................... 236

x

Contents

APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 239

Overview........................................................................................................... 239 Preparation ....................................................................................................... 239 Finding a Local Medical Library ...................................................................... 240 Medical Libraries Open to the Public............................................................... 240

APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 247

Overview........................................................................................................... 247 Your Rights as a Patient................................................................................... 247 Patient Responsibilities .................................................................................... 251 Choosing an Insurance Plan............................................................................. 252 Medicare and Medicaid .................................................................................... 255 NORD’s Medication Assistance Programs ..................................................... 258 Additional Resources ........................................................................................ 258 Vocabulary Builder........................................................................................... 259

ONLINE GLOSSARIES.................................................... 261 Online Dictionary Directories.......................................................................... 267

CHRONIC FATIGUE SYNDROME GLOSSARY ...... 269 General Dictionaries and Glossaries ................................................................ 292

INDEX................................................................................... 294

Introduction

1

INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3

Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2

2

Chronic Fatigue Syndrome

Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Chronic Fatigue Syndrome has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to chronic fatigue syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on chronic fatigue syndrome. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on chronic fatigue syndrome should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on

Introduction

3

appropriate options is always up to the patient in consultation with their physician and healthcare providers.

Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching chronic fatigue syndrome (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to chronic fatigue syndrome. It also gives you sources of information that can help you find a doctor in your local area specializing in treating chronic fatigue syndrome. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with chronic fatigue syndrome. Part II moves on to advanced research dedicated to chronic fatigue syndrome. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on chronic fatigue syndrome. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with chronic fatigue syndrome or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with chronic fatigue syndrome. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with chronic fatigue syndrome.

Scope While this sourcebook covers chronic fatigue syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that chronic fatigue syndrome is often considered a synonym or a condition closely related to the following:

4

Chronic Fatigue Syndrome

·

Chronic Epstein-barr Syndrome

·

Chronic Fatigue and Immune Dysfunction Syndrome (cfids)

·

Chronic Fatigue Immune Dysfunction Syndrome

·

Fatigue - Chronic

·

Yuppie Flu

In addition to synonyms and related conditions, physicians may refer to chronic fatigue syndrome using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for chronic fatigue syndrome:4 ·

300.5 neurasthenia

·

300.8 neurasthenia

·

780.7 chronic fatigue syndrome

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to chronic fatigue syndrome. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”

Introduction

5

the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with chronic fatigue syndrome will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with chronic fatigue syndrome is even indexed in search engines, a nonsystematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of chronic fatigue syndrome, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors

7

PART I: THE ESSENTIALS

ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on chronic fatigue syndrome. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of chronic fatigue syndrome to you or even given you a pamphlet or brochure describing chronic fatigue syndrome. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.

Guidelines

9

CHAPTER 1. THE ESSENTIALS ON CHRONIC FATIGUE SYNDROME: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on chronic fatigue syndrome. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on chronic fatigue syndrome can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on chronic fatigue syndrome. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine. 5

Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.

10 Chronic Fatigue Syndrome

There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with chronic fatigue syndrome and associated conditions: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Allergy and Infectious Diseases (NIAID); guidelines available at http://www.niaid.nih.gov/publications/

·

Centers for Disease Control and Prevention: various fact sheets on infectious diseases at http://www.cdc.gov/health/diseases.htm

Among the above, the National Institute of Allergy and Infectious Diseases (NIAID) is particularly noteworthy. The mission of the NIAID is to provide support for scientists conducting research aimed at developing better ways to diagnose, treat, and prevent the many infectious, immunologic and allergic diseases that afflict people worldwide.6 The NIAID is composed of four extramural divisions: the Division of AIDS; the Division of Allergy, Immunology and Transplantation; the Division of Microbiology and Infectious Diseases; and the Division of Extramural Activities. In addition, NIAID scientists conduct intramural research in laboratories located in Bethesda, Rockville and Frederick, Maryland, and in Hamilton, Montana. The following patient guideline was recently published by the NIAID on chronic fatigue syndrome.

What Is Chronic Fatigue Syndrome?7 Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most This paragraph has been adapted from the NIAID: http://www.niaid.nih.gov/facts/overview.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 7 Adapted from the Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/ncidod/diseases/cfs/info.htm. 6

Guidelines 11

often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made.

Definition of CFS A great deal of debate has surrounded the issue of how best to define CFS. In an effort to resolve these issues, an international panel of CFS research experts convened in 1994 to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. In essence, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria: ·

Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and

·

Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.

Similar Medical Conditions A number of illnesses have been described that have a similar spectrum of symptoms to CFS. These include fibromyalgia syndrome, myalgic encephalomyelitis, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis. Although these illnesses may present with a primary symptom other than fatigue, chronic fatigue is commonly associated with all of them.

12 Chronic Fatigue Syndrome

Other Conditions That May Cause Similar Symptoms In addition, there are a large number of clinically defined, frequently treatable illnesses that can result in fatigue. Diagnosis of any of these conditions would exclude a definition of CFS unless the condition has been treated sufficiently and no longer explains the fatigue and other symptoms. These include hypothyroidism, sleep apnea and narcolepsy, major depressive disorders, chronic mononucleosis, bipolar affective disorders, schizophrenia, eating disorders, cancer, autoimmune disease, hormonal disorders8, subacute infections, obesity, alcohol or substance abuse, and reactions to prescribed medications.

Other Commonly Observed Symptoms in CFS In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequencies of occurrence of these symptoms vary from 20% to 50% among CFS patients. They include abdominal pain, alcohol intolerance, bloating, chest pain, chronic cough, diarrhea, dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, psychological problems (depression, irritability, anxiety, panic attacks), shortness of breath, skin sensations, tingling sensations, and weight loss.

Demographics Several studies have helped to establish the distribution and frequency of occurrence of CFS. While no single study can be considered definitive — each approach has inherent strengths and weaknesses — epidemiologic studies have greatly improved our understanding of how common the disease is, which individuals are the most susceptible to developing it, whether it can be transmitted to others, and how the illness typically progresses in individuals.

How Common Is CFS? One of the earliest attempts to estimate the prevalence of CFS was conducted by the Centers for Disease Control and Prevention (CDC) from 1989 to 1993. Physicians in four U.S. cities were asked to refer possible CFS patients for 8

Not all hormonal aberrations necessarily exclude a diagnosis of CFS.

Guidelines 13

clinical evaluation by medical personnel participating in the study. The study estimated that between 4.0 and 8.7 per 100,000 persons 18 years of age or older have CFS and are under medical care. However, these projections were underestimates and could not be generalized to the U.S. population since the study did not randomly select its sites. A more recent study of the Seattle area has estimated that CFS affects between 75 and 265 people per 100,000 population. This estimate is similar to the prevalence observed in another CDC study conducted in San Francisco, which put the occurrence of CFS-like disease (not clinically diagnosed) at approximately 200 per 100,000 persons. In general, it is estimated that perhaps as many as half a million persons in the United States have a CFS-like condition. Who Gets CFS? This question is complex and does not have a definitive answer. The CDC four-city surveillance study of CFS identified a population of patients that was 98% Caucasian and 85% female, with an average age at onset of 30 years. More than 80% had advanced education and one-third were from upper income families. However, these data included only patients who were under a physician’s care. There is now evidence that CFS affects all racial and ethnic groups and both sexes. The Seattle study found that 59% of the CFS patients were women. Eighty-three percent were Caucasian, an underrepresentation, since over 90% of the patients in the study were white. CDC’s San Francisco study found that CFS-like disease was most prevalent among women, among persons with household annual incomes of under $40,000, and among blacks, and was least common among Asians and whites. Adolescents can have CFS, but few studies of adolescents have been published. A recently published CDC study documented that adolescents 12 to 18 years of age had CFS significantly less frequently than adults and did not identify CFS in children under 12 years of age. CFS-like illness has been reported in children under 12 by some investigators, although the symptom pattern varies somewhat from that seen in adults and adolescents. The illness in adolescents has many of the same characteristics as it has in adults. However, it is particularly important that the unique problems of chronically ill adolescents (e.g., family social and health interactions, education, social interactions with peers) be considered as a part of their care. Appropriate dissemination of CFS information to patients, their families, and school authorities is also important. CDC and the National Institutes of Health (NIH) are currently pursuing studies of CFS in children and adolescents.

14 Chronic Fatigue Syndrome

Is CFS Contagious? There is no evidence to support the view that CFS is a contagious disease. Contagious diseases typically occur in well-defined clusters, otherwise known as outbreaks or epidemics. While some earlier studies, such as investigations of fatiguing illness in Incline Village, Nev., and Punta Gorda, Fla., have been cited as evidence for CFS acting as a contagious illness, they did not rigorously document the occurrence of person-to-person transmission. In addition, none of these studies included patients with clinically evaluated fatigue that fit the CFS case definition; therefore, these clusters of cases cannot be construed as outbreaks of CFS. CDC worked with state health departments to investigate a number of reported outbreaks of fatiguing illness and has yet to confirm a cluster of CFS cases. Implicit in any contagious illness is an infectious cause for the disease. Carefully designed case-control studies involving rigorously classified CFS patients and controls have found no association between CFS and a large number of human disease agents. Finally, none of the behavioral characteristics typically associated with contagious disease, such as intravenous drug use, exposure to animals, occupational or travel history, or sexual behavior, have been associated with CFS in case-control studies. It therefore seems unlikely that CFS is a transmissible disease. Nevertheless, the lack of evidence for clustering of CFS, the absence of associations between specific behavioral characteristics and CFS, and the failure to detect evidence of infection more commonly in CFS patients than in controls do not rule out the possibility that infectious agents are involved in or reflect the development of this illness. For example, important questions remain to be answered concerning possible reactivation of latent viruses (such as human herpesviruses) and a possible role for infectious agents in some cases of CFS.

Clinical Course of CFS It is vital to understand the clinical course of CFS. This knowledge is required to facilitate communication between physicians and patients, to evaluate possible new treatments, and to address insurance and disability issues. The clinical course of CFS varies considerably among persons who have the disorder; the actual percentage of patients who recover is unknown, and even the definition of what should be considered recovery is subject to debate. Some patients recover to the point that they can resume work and other activities, but continue to experience various or periodic CFS symptoms. Some patients recover completely with time, and some grow progressively worse. CFS often follows a cyclical course, alternating between

Guidelines 15

periods of illness and relative well being. CDC continues to monitor the patients enrolled in the four-city surveillance study; recovery is defined by the patient and may not reflect complete symptom-free recovery. Approximately 50% of patients reported “recovery,” and most recovered within the first 5 years after onset of illness. No characteristics were identified that made one patient more likely to recover than another. At illness onset, the most commonly reported CFS symptoms were sore throat, fever, muscle pain, and muscle weakness. As the illness progressed, muscle pain and forgetfulness increased and the reporting of depression decreased.

Possible Causes of CFS The cause or causes of CFS remain unknown, despite a vigorous search. While a single cause for CFS may yet be identified, another possibility is that CFS represents a common endpoint of disease resulting from multiple precipitating causes. As such, it should not be assumed that any of the possible causes listed below has been formally excluded, or that these largely unrelated possible causes are mutually exclusive. Conditions that have been proposed to trigger the development of CFS include virus infection or other transient traumatic conditions, stress, and toxins.

Infectious Agents Due in part to its similarity to chronic mononucleosis, CFS was initially thought to be caused by a virus infection, most probably Epstein-Barr virus (EBV). It now seems clear that CFS cannot be caused exclusively by EBV or by any single recognized infectious disease agent. No firm association between infection with any known human pathogen and CFS has been established. CDC’s four-city surveillance study found no association between CFS and infection by a wide variety of human pathogens, including EBV, human retroviruses, human herpesvirus 6, enteroviruses, rubella, Candida albicans, and more recently bornaviruses and Mycoplasma. Taken together, these studies suggest that among identified human pathogens, there appears to be no causal relationship for CFS. However, the possibility remains that CFS may have multiple causes leading to a common endpoint, in which case some viruses or other infectious agents might have a contributory role for a subset of CFS cases.

16 Chronic Fatigue Syndrome

Immunology It has been proposed that CFS may be caused by an immunologic dysfunction, for example inappropriate production of cytokines, such as interleukin-1, or altered capacity of certain immune functions. One thing is certain at this juncture: there are no immune disorders in CFS patients on the scale traditionally associated with disease. Some investigators have observed anti-self antibodies and immune complexes in many CFS patients, both of which are hallmarks of autoimmune disease. However, no associated tissue damage typical of autoimmune disease has been described in patients with CFS. The opportunistic infections or increased risk for cancer observed in persons with immunodeficiency diseases or in immunosuppressed individuals is also not observed in CFS. Several investigators have reported lower numbers of natural killer cells or decreased natural killer cell activity among CFS patients compared with healthy controls, but others have found no differences between patients and controls. T-cell activation markers have also been reported to have differential expression in groups of CFS patients compared with controls, but again, not all investigators have consistently observed these differences. One intriguing hypothesis is that various triggering events, such as stress or a viral infection, may lead to the chronic expression of cytokines and then to CFS. Administration of some cytokines in therapeutic doses is known to cause fatigue, but no characteristic pattern of chronic cytokine secretion has ever been identified in CFS patients. In addition, some investigators have noted clinical improvement in patients with continued high levels of circulating cytokines; if a causal relationship exists between cytokines and CFS, it is likely to be complex. Finally, several studies have shown that CFS patients are more likely to have a history of allergies than are healthy controls. Allergy could be one predisposing factor for CFS, but it cannot be the only one, since not all CFS patients have it.

Hypothalamic-Pituitary Adrenal (HPA) Axis Multiple laboratory studies have suggested that the central nervous system may have an important role in CFS. Physical or emotional stress, which is commonly reported as a pre-onset condition in CFS patients, activates the hypothalamic-pituitary-adrenal axis, or HPA axis, leading to increased release of cortisol and other hormones. Cortisol and corticotrophin-releasing hormone (CRH), which are also produced during the activation of the HPA axis, influence the immune system and many other body systems. They may also affect several aspects of behavior. Recent studies revealed that CFS

Guidelines 17

patients often produce lower levels of cortisol than do healthy controls. Similar hormonal abnormalities have been observed by others in CFS patients and in persons with related disorders like fibromyalgia. Cortisol suppresses inflammation and cellular immune activation, and reduced levels might relax constraints on inflammatory processes and immune cell activation. As with the immunologic data, the altered cortisol levels noted in CFS cases fall within the accepted range of normal, and only the average between cases and controls allows the distinction to be made. Therefore, cortisol levels cannot be used as a diagnostic marker for an individual with CFS. A placebo-controlled trial, in which 70 CFS patients were randomized to receive either just enough hydrocortisone each day to restore their cortisol levels to normal or placebo pills for 12 weeks, concluded that low levels of cortisol itself are not directly responsible for symptoms of CFS, and that hormonal replacement is not an effective treatment. However, additional research into other aspects of neuroendocrine correlates of CFS is necessary to fully define this important, and largely unexplored, field.

Neurally Mediated Hypotension Rowe and coworkers conducted studies to determine whether disturbances in the autonomic regulation of blood pressure and pulse (neurally mediated hypotension, or NMH) were common in CFS patients. The investigators were alerted to this possibility when they noticed an overlap between their patients with CFS and those who had NMH. NMH can be induced by using tilt table testing, which involves laying the patient horizontally on a table and then tilting the table upright to 70 degrees for 45 minutes while monitoring blood pressure and heart rate. Persons with NMH will develop lowered blood pressure under these conditions, as well as other characteristic symptoms, such as lightheadedness, visual dimming, or a slow response to verbal stimuli. Many CFS patients experience lightheadedness or worsened fatigue when they stand for prolonged periods or when in warm places, such as in a hot shower. These conditions are also known to trigger NMH. One study observed that 96% of adults with a clinical diagnosis of CFS developed hypotension during tilt table testing, compared with 29% of healthy controls. Tilt table testing also provoked characteristic CFS symptoms in the patients. A study (not placebo-controlled) was conducted to determine whether medications effective for the treatment of NMH would benefit CFS patients. A subset of CFS patients reported a striking improvement in symptoms, but not all patients improved. A placebocontrolled trial of NMH medications for CFS patients is now in progress.

18 Chronic Fatigue Syndrome

Nutritional Deficiency There is no published scientific evidence that CFS is caused by a nutritional deficiency. Many patients do report intolerances for certain substances that may be found in foods or over-the-counter medications, such as alcohol or the artificial sweetener aspartame. While evidence is currently lacking for nutritional defects in CFS patients, it should also be added that a balanced diet can be conducive to better health in general and would be expected to have beneficial effects in any chronic illness.

How Physicians Diagnose CFS If a patient has had 6 or more consecutive months of severe fatigue that is reported to be unrelieved by sufficient bed rest and that is accompanied by nonspecific symptoms, including flu-like symptoms, generalized pain, and memory problems, the physician should further investigate the possibility that the patient may have CFS. The first step in this investigation is obtaining a detailed medical history and performing a complete physical examination of the patient. Initial testing should include a mental status examination, which ordinarily will involve a short discussion in the office or a brief oral test. A standard series of laboratory tests of the patient’s blood and urine should be performed to help the physician identify other possible causes of illness. If test results suggest an alternative explanation for the patient’s symptoms, additional tests may be performed to confirm that possibility. If no cause for the symptoms is identified, the physician may render a diagnosis of CFS if the other conditions of the case definition are met. A diagnosis of idiopathic chronic fatigue could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria for CFS.

Appropriate Tests for Routine Diagnosis of CFS While the number and type of tests performed may vary from physician to physician, the following tests constitute a typical standard battery to exclude other causes of fatiguing illness: alanine aminotransferase (ALT), albumin, alkaline phosphatase (ALP), blood urea nitrogen (BUN), calcium, complete blood count, creatinine, electrolytes, erythrocyte sedimentation rate (ESR), globulin, glucose, phosphorus, thyroid stimulating hormone (TSH), total protein, transferrin saturation, and urinalysis. Further testing may be required to confirm a diagnosis for illness other than CFS. For example, if a patient has low levels of serum albumin together with an above-normal

Guidelines 19

result for the blood urea nitrogen test, kidney disease would be suspected. The physician may choose to repeat the relevant tests and possibly add new ones aimed specifically at diagnosing kidney disease. If autoimmune disease is suspected on the basis of initial testing and physical examination, the physician may request additional tests, such as for antinuclear antibodies.

Psychological/Neuropsychological Testing In some individuals it may be beneficial to assess the impact of fatiguing illness on certain cognitive or reasoning skills, e.g., concentration, memory, and organization. This may be particularly relevant in children and adolescents, where academic attendance, performance, and specific educational needs should be addressed. Personality assessment may assist in determining coping abilities and whether there is a co-existing affective disorder requiring treatment.

Theoretical and Experimental Tests A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time.

20 Chronic Fatigue Syndrome

Careful Consideration of Information about CFS Because the cause of CFS has not been identified and its effect on the body is not well understood, periodically new unvalidated beliefs about cures and causes of CFS are widely circulated. These may be based on one or more recent reports from the peer-reviewed scientific literature, or they may evolve from the anecdotal remarks of clinicians or scientists at medical meetings. In some cases the origin is obscure. Even work that is of sufficiently high caliber to be published in the scientific literature is not without limitations and design flaws, and all published work needs to be verified and expanded on by others before it can be applied with confidence in clinical situations. With regard to some stories that are currently circulating about CFS: (i) there is no evidence that CFS patients lose their fingerprints; (ii) there is no scientific evidence of any nutritional deficiency in CFS patients; and (iii) suicides of CFS patients have been reported, but the rate of occurrence has not been well-studied and it is not known whether the rate is higher or lower than what would be expected in the general population. It is not practical to address all of the information that circulates or emerges regarding CFS. Simply be advised to be wary of information that points to sure cures or that alludes to pathological damage as a consequence of CFS. Specific questions should be discussed with the patient’s physician, local or state health department, CDC, or one of the national patient support organizations.

Treatment A variety of vitamin supplements, medications, and other substances have been described as having potential therapeutic benefits for chronic fatigue syndrome (CFS) patients. Many of the treatments recommended for CFS patients are intended to provide relief for symptoms of this condition. However, some proposed treatments are unproven and potentially dangerous. As a service to CFS patients and other interested persons, this section provides some basic information about different therapies that have been used for the treatment of CFS patients. These descriptions are intended to be used only for general informational purposes. Decisions regarding the use of these or other treatments should be made only in consultation with a physician. If you have doubts about a particular treatment, contact your local medical society, university medical school, or another physician for additional information.

Guidelines 21

Non-Pharmacologic Therapy Since no cause for CFS has been identified, the therapies for this disorder are directed at relief of symptoms. The physician, together with the patient, will develop an individually tailored program that provides the greatest perceived benefit, based on some combination of the therapies discussed in this section.

Physical Activity In general, physicians advise patients with CFS to pace themselves carefully and encourage them to avoid unusual physical or emotional stress. A regular, manageable daily routine helps avoid the “push-crash” phenomenon characterized by overexertion during periods of better health, followed by a relapse of symptoms perhaps initiated by the excessive activity. Although patients should be as active as possible, clinicians may need to explain the disorder to employers and family members, advising them to make allowances as possible. Modest regular exercise to avoid deconditioning is important and should be supervised by a physician or physical therapist.

Physical Activities and Therapy Non-pharmacologic therapies sometimes used by CFS patients include acupuncture, aquatic therapy, chiropractic, cranial-sacral, light exercise, massage, self-hypnosis, stretching, tai chi, therapeutic touch, and yoga. Psychotherapy and Supportive Counseling Certain psychotherapies, such as cognitive behavior therapy, have shown promise for facilitating patient coping and for alleviating some of the distress associated with CFS. In addition, any chronic illness can affect the patient caregivers and family. In such instances, family therapy may foster good communication and reduce the adverse impact of CFS on the family.

22 Chronic Fatigue Syndrome

Pharmacologic Therapy Pharmacologic therapy is directed toward the relief of specific symptoms experienced by the individual patient. Patients with CFS appear particularly sensitive to drugs, especially those that affect the central nervous system. Thus, the usual treatment strategy is to begin with very low doses and to escalate the dosage gradually as necessary.

Prescription Medications ·

Low-Dose Tricyclic Agents: Tricyclic agents are sometimes prescribed for CFS patients to improve sleep and to relieve mild, generalized pain. Examples include doxepin (Adapin, Sinequan), amitriptyline (Elavil, Etrafon, Limbitrol, Triavil), desipramine (Norpramin), and nortriptyline (Pamelor). Some adverse reactions include dry mouth, drowsiness, weight gain, and elevated heart rate.

·

Antidepressants: Antidepressants have been used to treat depression in CFS patients, although non-depressed CFS patients receiving treatment with serotonin reuptake inhibitors have been found by some physicians to benefit from this treatment as well or better than depressed patients. Examples of antidepressants used to treat CFS include serotonin reuptake inhibitors such as fluoxetine (Prozac), sertraline (Zoloft), and paroxetine (Paxil); venlafaxine (Effexor); trazodone (Desyrel); and bupropion (Wellbutrin). A number of mild adverse reactions, varying with the specific drug, may be experienced.

·

Anxiolytic Agents: Anxiolytic agents are used to treat panic disorder in CFS patients. Examples include alprazolam (Xanax), clonazepam (Klonopin), and lorazepam (Ativan). Common adverse reactions include sedation, amnesia, and withdrawal symptoms (insomnia, abdominal and muscle cramps, vomiting, sweating, tremors, and convulsions).

·

Nonsteroidal Antiinflammatory Drugs: These drugs may be used to relieve pain and fever in CFS patients. Some are available as over-thecounter medications. Examples include naproxen (Aleve, Anaprox, Naprosen), ibuprofen (Advil, Bayer Select, Motrin, Nuprin), and piroxicam (Feldene). These medications are generally safe when used as directed, but can cause a variety of adverse effects, including kidney damage, gastrointestinal bleeding, abdominal pain, nausea, and vomiting.

·

Antimicrobials: An infectious cause for CFS has not been identified, and antimicrobial agents are not commonly prescribed for CFS, unless of

Guidelines 23

course the patient has been diagnosed with a concurrent infection. A controlled trial of the antiviral drug acyclovir found no benefit for the treatment of patients with CFS. ·

Antiallergy Therapy: Some CFS patients have histories of allergy, and these symptoms may flare periodically. Non-sedating antihistamines may be helpful for CFS patients. Examples include astemizole (Hismanal) and loratadine (Claritin). Some of the more common adverse reactions associated with their use include drowsiness, fatigue, and headache. Sedating antihistimines can also be of benefit to patients at bedtime.

·

Antihypotensive Therapy: Fludrocortisone (Florinef) has sometimes been prescribed for CFS patients who have had a positive tilt table test. Florinef is currently being tested in controlled studies for its efficacy in the treatment of CFS patients. Beta blockers such as atenolol (Tenormin) have also been prescribed for patients with a positive tilt table test. Increased salt and water intake is also recommended for these patients. Adverse reactions include elevated blood pressure and fluid retention.

Experimental Drugs and Treatments ·

Ampligen is a synthetic nucleic acid product that stimulates the production of interferons, a family of immune response modifiers that are also known to have anti-viral activity. One report of a doubleblinded, placebo-controlled study of CFS patients documented modest improvements in cognition and performance among Ampligen recipients compared with the placebo group. These preliminary results will need to be confirmed by further study. Ampligen is not approved by the Food and Drug Administration (FDA) for widespread use, and the administration of this drug in CFS patients should be considered experimental. Although the recipients of Ampligen in this study tolerated the drug well, the adverse reactions of this material are still incompletely characterized, and some participants did experience reactions that might be attributable to Ampligen.

·

Dehydroepiandrosterone (DHEA) was reported in preliminary studies to improve symptoms in some patients; however, this finding has not been confirmed and the use of DHEA in patients should be regarded as experimental.

·

Gamma globulin (Gammar) is pooled human immune globulin. It contains antibody molecules directed against a broad range of common infectious agents and is ordinarily used as a means for passively immunizing persons whose immune system has been compromised, or who have been exposed to an agent that might cause more serious

24 Chronic Fatigue Syndrome

disease in the absense of immune globulin. Its use with CFS patients is experimental and based on the unsubstantiated hypothesis that CFS is characterized by an underlying immune disorder. Serious adverse reactions are uncommon, although in rare instances gamma globulin may initiate anaphylactic shock. ·

High colonic enemas have no demonstrated value in the treatment of CFS. The procedure can promote intestinal disease.

·

Kutapressin is a crude extract from pig’s liver. Its use should be regarded as experimental in any clinical circumstance, and there is no scientific evidence that it has any value in the treatment of CFS patients. Kutapressin can elicit allergic reactions. Dietary Supplements and Herbal Preparations

General Comments: A variety of dietary supplements and herbal preparations are claimed to have potential benefits for CFS patients. With few exceptions, the effectiveness of these remedies for treating CFS patients has not been evaluated in controlled trials. Contrary to common belief, the “natural” origin of a product does not ensure safety. Dietary supplements and herbal preparations can have potential side reactions and some can interfere or interact with prescription medications. CFS patients should seek the advice of their physician before using any unprescribed remedy. ·

Vitamins, Coenzymes, Minerals: Preparations that have been claimed to have benefit for CFS patients include adenosine monophosphate, coenzyme Q-10, germanium, glutathione, iron, magnesium sulfate, melatonin, NADH, selenium, l-tryptophan, vitamins B12, C, and A, and zinc. An early CFS study found reduced red blood cell magnesium sulfate in CFS patients, but two subsequent studies have found no difference between patients and healthy controls. The therapeutic value of all these preparations has not been validated.

·

Herbal Preparations: Plants are known sources of pharmacological materials. However, unrefined plant preparations contain variable levels of the active compound as well as many irrelevant, potentially harmful substances. Preparations that have been claimed to have benefit to CFS patients include astralagus, borage seed oil, bromelain, comfrey, echinacea, garlic, Ginkgo biloba, ginseng, primrose oil, quercetin, St. John’s wort, and Shiitake mushroom extract. Only primrose oil was evaluated in a controlled study, and the beneficial effects noted in CFS patients have not been independently confirmed. Some herbal

Guidelines 25

preparations, notably comfrey and high-dose ginseng, have recognized harmful effects.

CFS Support Groups Chronic Fatigue Syndrome (CFS) patients may find it therapeutic to meet with other people who have this illness, and often this can be accomplished by joining a local CFS support group. Review the following information carefully to locate a resource that is reliable, convenient, and comfortable to you.

How to Select a Support Group Support groups are not appropriate for everyone, and some CFS patients may find that a support group actually adds to their stress rather than relieving it. Most support groups are free, collect voluntary donations, or charge modest membership dues to cover basic expenses (e.g. refreshments at meetings or photocopying costs). A useful support group should include: ·

Both newcomers and patients who have had CFS for longer periods of time to provide a balance of perspectives for the group.

·

People with whom the CFS patient feels comfortable.

·

Leaders who empathize, gently draw out shy members, and keep others from dominating, and who distill discussion into useful information.

·

A history indicating the group is stable and meeting the needs of its members.

Some support groups may put their own interests before those of the individual patient. Groups that engage in any of the following activities should be avoided: ·

Promise sure cures and quick solutions.

·

Conduct meetings that are mainly “gripe” sessions.

·

Urge patients to stop prescribed treatment and recommend a single solution to their problem.

·

Insist that patients reveal private or sensitive information.

26 Chronic Fatigue Syndrome

·

Demand allegiance to a cult-like, charismatic leader.

·

Charge high fees.

·

Require patients to purchase products.

CFS Case Definition The research definition devised in 1988 was made deliberately narrow with the understanding that, while some cases of chronic fatigue syndrome (CFS) might be missed, those cases that met the criteria would provide the best chance for identifying distinguishing features of the disorder. That was a sound strategy within limits, but its application in a variety of studies has now clearly failed to identify any traits that reliably discern CFS patients from healthy controls. The original case definition had at least one other major shortcoming, in that it failed to provide any guidelines for performing comparative studies of CFS with other illnesses marked by severe chronic fatigue. To address these problems, an international panel of CFS researchers was convened in 1993 to revise the 1988 research case definition and to recommend guidelines for studies of CFS. These new guidelines present a research strategy for evaluation, classification, and subgrouping of fatigued persons. In essence, patients with fatigue of recent onset are classified as having prolonged fatigue (persistent or relapsing fatigue of one month or longer), idiopathic chronic fatigue (six months or longer), and CFS (persistent or relapsing fatigue of six months or longer, with no medical explanation, and meeting specific symptom criteria). Persons can be further subgrouped by type of onset (gradual or sudden), the presence or absence of co-morbid (co-existing) conditions (including psychiatric conditions), fatigue levels, duration of fatigue, current level of physical function, and other epidemiologic or laboratory criteria of interest. The guidelines also recommend specific medical evaluations for exclusionary diagnoses and the use of specific instruments to evaluate neuropsychiatric conditions, fatigue levels, and overall function.

The Revised Case Definition (Abridged Version) The 1988 chronic fatigue syndrome (CFS) working case definition (Holmes, et al) did not effectively distinguish CFS from other types of unexplained fatigue. For this reason, it was decided during a 1993 meeting of CFS investigators to develop a logical revision of that definition. The core of the

Guidelines 27

revised CFS case definition is a set of uniformly applicable guidelines for the clinical and research evaluation of CFS and the other forms of fatigue. In the revised definition, a consensus viewpoint from many of the leading CFS researchers and clinicians (including input from patient group representatives), chronic fatigue syndrome is treated as a subset of chronic fatigue, a broader category defined as unexplained fatigue of greater than or equal to six month’s duration. Chronic fatigue in turn, is treated as a subset of prolonged fatigue, which is defined as fatigue lasting one or more months. The expectation is that scientists will devise epidemiologic studies of populations with prolonged fatigue and chronic fatigue, and search within those populations for illness patterns consistent with CFS.

Conditions that Exclude a Diagnosis of CFS ·

Any active medical condition that may explain the presence of chronic fatigue, such as untreated hypothyroidism, sleep apnea and narcolepsy, and iatrogenic conditions such as side effects of medication.

·

Some diagnosable illnesses may relapse or may not have completely resolved during treatment. If the persistence of such a condition could explain the presence of chronic fatigue, and if it cannot be clearly established that the original condition has completely resolved with treatment, then such patients should not be classified as having CFS. Examples of illnesses that can present such a picture include some types of malignancies and chronic cases of hepatitis B or C virus infection.

·

Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features such as bipolar affective disorders, schizophrenia of any subtype, delusional disorders of any subtype, dementias of any subtype, anorexia nervosa, or bulimia nervosa.

·

Alcohol or other substance abuse, occurring within 2 years of the onset of chronic fatigue and any time afterwards.

·

Severe obesity as defined by a body mass index [body mass index = weight in kilograms ÷ (height in meters)] equal to or greater than 45. [Note: body mass index values vary considerably among different age groups and populations. No “normal” or “average” range of values can be suggested in a fashion that is meaningful. The range of 45 or greater was selected because it clearly falls within the range of severe obesity.]

·

Any unexplained abnormality detected on examination or other testing that strongly suggests an exclusionary condition must be resolved before attempting further classification.

28 Chronic Fatigue Syndrome

Conditions That Do Not Exclude a Diagnosis of CFS ·

Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or melancholic depression, neurasthenia, and multiple chemical sensitivity disorder.

·

Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented. Such conditions include hypothyroidism for which the adequacy of replacement hormone has been verified by normal thyroid-stimulating hormone levels, or asthma in which the adequacy of treatment has been determined by pulmonary function and other testing.

·

Any condition, such as Lyme disease or syphillis, that was treated with definitive therapy before development of chronic symptoms.

·

Any isolated and unexplained physical examination finding, or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition. Such conditions include an elevated antinuclear antibody titer that is inadequate, without additional laboratory or clinical evidence, to strongly support a diagnosis of a discrete connective tissue disorder.

A Note on the Use of Laboratory Tests in the Diagnosis of CFS A minimum battery of laboratory screening tests should be performed. Routinely performing other screening tests for all patients has no known value. However, further tests may be indicated on an individual basis to confirm or exclude another diagnosis, such as multiple sclerosis. In these cases, additional tests should be done according to accepted clinical standards. The use of tests to diagnose CFS (as opposed to excluding other diagnostic possibilities) should be done only in the setting of protocol-based research. The fact that such tests are investigational and do not aid in diagnosis or management should be explained to the patient. In clinical practice, no tests can be recommended for the specific purpose of diagnosing chronic fatigue syndrome. Tests should be directed toward confirming or excluding other possible clinical conditions. Examples of specific tests that do not confirm or exclude the diagnosis of chronic fatigue syndrome include serologic tests for Epstein-Barr virus, enteroviruses,

Guidelines 29

retroviruses, human herpesvirus , and Candida albicans; tests of immunologic function, including cell population and function studies; and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography).

Complete Text of Revised Case Definition9 The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic, and integrated approach to the evaluation, classification, and study of persons with this condition and other fatiguing illnesses. We propose a conceptual framework and a set of guidelines that provide such an approach. Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome, and a strategy for subgrouping fatigued persons in formal investigations. We have developed a conceptual framework and a set of research guidelines to use in studies of the chronic fatigue syndrome. The guidelines cover the clinical and laboratory evaluation of persons with unexplained fatigue; the identification of underlying conditions that may explain the presence of chronic fatigue; revised criteria for defining cases of the chronic fatigue syndrome; and a strategy for subdividing the chronic fatigue syndrome and other unexplained cases of chronic fatigue into subgroups. Background The chronic fatigue syndrome is a clinically defined condition characterized by severe disabling fatigue and a combination of symptoms that prominently features self-reported impairments in concentration and shortterm memory, sleep disturbances, and musculoskeletal pain. Diagnosis of From the Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia; Laboratory of Clinical Investigation and Division of Microbiology and Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland; School of Psychiatry, Prince Henry Hospital, University of New South Wales, Sydney, Australia; University of Oxford Department of Psychiatry, Warneford Hospital, Oxford, United Kingdom; and Division of General Medicine, Brigham and Women’s Hospital, Harvard University, Boston, Massachusetts. Keiji Fukuda, M.D., M.P.H., Stephen E. Straus, M.D., Ian Hickie, M.D., F.R.A.N.Z.C.P., Michael C. Sharpe, M.R.C.P., M.R.C. Psych., James G. Dobbins, Ph.D., Anthony L. Komaroff, M.D., F.A.C.P., and the International Chronic Fatigue Syndrome Study Group. 9

30 Chronic Fatigue Syndrome

the chronic fatigue syndrome can be made only after alternate medical and psychiatric causes of chronic fatiguing illness have been excluded. No pathognomonic signs or diagnostic tests for this condition have been validated in scientific studies; moreover, no definitive treatments exist for the chronic fatigue syndrome . Recent longitudinal studies suggest that some persons affected by the chronic fatigue syndrome improve with time but that most remain functionally impaired for several years.

Issues in Chronic Fatigue Syndrome Research The central issue in chronic fatigue syndrome research is whether the chronic fatigue syndrome or any subset of it is a pathologically discrete entity, as opposed to a debilitating but nonspecific condition shared by many different entities. Resolution of this issue depends on whether clinical, epidemiologic, and pathophysiologic features convincingly distinguish the chronic fatigue syndrome from other illnesses. Clarification of the relation between the chronic fatigue syndrome and the neuropsychiatric syndromes is particularly important. The latter disorders are potentially the most important source of confounding in studies of the chronic fatigue syndrome. Somatoform disorders, anxiety disorders, major depression, and other symptomatically defined syndromes can manifest severe fatigue and multiple somatic and sychological symptoms and are diagnosed more frequently in populations affected by chronic fatigue and the chronic fatigue syndrome than in the general population. The extent to which the features of the chronic fatigue syndrome are generic features of chronic fatigue and deconditioning due to physical inactivity common to a diverse group of illnesses must also be established.

A Conceptual Framework for Studying Chronic Fatigue Syndrome In the United States, 24% of the general adult population has experienced fatigue lasting 2 weeks or longer, with 59% to 64% of these people reporting no medical cause. In one study, 24% of primary care clinic patients reported having had prolonged fatigue (1 month). In many persons with prolonged fatigue, fatigue persists beyond 6 months (defined as chronic fatigue). We propose a conceptual framework to guide the development of studies relevant to the chronic fatigue syndrome. In this framework, in which the

Guidelines 31

chronic fatigue syndrome is considered a subset of prolonged fatigue (one month), epidemiologic studies of populations defined by prolonged or chronic fatigue can be used to search for illness patterns consistent with the chronic fatigue syndrome. Such studies, which differ from case-control and cohort studies based on predetermined criteria for the chronic fatigue syndrome, will also produce much-needed clinical and laboratory background information. This framework also clarifies the need to compare populations defined by the chronic fatigue syndrome with several other populations in case-control and cohort studies. The most important comparison populations are those defined by overlapping disorders, by prolonged fatigue, and by forms of chronic fatigue that do not meet criteria for the chronic fatigue syndrome. Controls drawn exclusively from healthy populations are inadequate to confirm the specificity of chronic fatigue syndrome-associated abnormalities. Need for Revised Criteria to Define the Chronic Fatigue Syndrome The possibility that chronic fatigue syndrome study populations have been selected or defined in substantially different ways has made it difficult to interpret conflicting laboratory findings related to the chronic fatigue syndrome . For example, the North American chronic fatigue syndrome working case definition has been inconsistently applied by researchers. This case definition is frequently modified in practice because some of the criteria are difficult to interpret or to comply with and because opinions differ with regard to the classification of chronic fatigue cases preceded by a history of psychiatric illnesses. Current criteria for the chronic fatigue syndrome also do not appear to define a distinct group of cases. For example, participants in the Centers for Disease Control and Prevention (CDC) chronic fatigue syndrome surveillance system who met the chronic fatigue syndrome case definition did not substantially differ by demographic characteristics, symptoms, and other illness features from those who did not meet the definition (except by criteria used to place patients into one of our predetermined surveillance classification categories [Reyes M, et al. Unpublished data]). These findings indicate that additional subgrouping or stratification of study cases into more homogeneous groups is necessary for comparative studies.

32 Chronic Fatigue Syndrome

Need for Clinical Evaluation Standards Our experience suggests that fatigued persons often receive inadequate or excessive medical evaluations. In the CDC chronic fatigue syndrome surveillance system, all participants were clinically evaluated by a primary physician before enrollment. Subsequently, 18% were found to have a preexisting medical condition that plausibly accounted for their chronic fatiguing illness (Reyes M, et al. Unpublished data). These medical conditions were identified either from a single battery of routine laboratory tests done on blood specimens obtained at enrollment or from review of available medical records. We believe that inappropriate tests are often used to diagnose the chronic fatigue syndrome in chronically fatigued persons. This practice should be discouraged.

Need for a Comprehensive and Integrated Approach The complexities of the chronic fatigue syndrome and the existence of several obstacles to our understanding of it make a comprehensive and integrated approach to the study of the chronic fatigue syndrome and similar illnesses desirable. The purpose of the proposed guidelines in Figure 2 is to facilitate such an approach.

Guidelines 33

Figure 2. Proposed guidelines to facilitate a comprehensive and integrated approach to the study of CFS and similar illnesses.

34 Chronic Fatigue Syndrome

Clinical Evaluation of Prolonged Fatigue and Chronic Fatigue Prolonged fatigue is defined as self-reported, persistent fatigue of 1 month or longer. Chronic fatigue is defined as self-reported persistent or relapsing fatigue of 6 or more consecutive months. The presence of prolonged or chronic fatigue requires clinical evaluation to identify underlying or contributing conditions that require treatment. Further diagnosis or classification of chronic fatigue cases cannot be made without such an evaluation. The following areas should be included in the clinical evaluation. ·

A thorough history that covers medical and psychosocial circumstances at the onset of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other substance abuse; and current use of prescription and over-the-counter medications and food supplements.

·

A mental status examination to identify abnormalities in mood, intellectual function, memory, and personality. Particular attention should be directed toward current symptoms of depressive or anxiety, self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurologic disorder requires that an appropriate psychiatric, psychological, or neurologic evaluation be done.

·

A thorough physical examination.

·

A minimum battery of laboratory screening tests including complete blood count with leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes, and creatinine; determination of thyroidstimulating hormone; and urinalysis.

Routinely doing screening tests for all patients has no known value. However, further tests may be indicated on an individual basis to confirm or exclude another diagnosis, such as multiple sclerosis. In these cases, additional tests or procedures should be obtained according to accepted clinical standards. The use of tests to diagnose the chronic fatigue syndrome (rather than to exclude other diagnostic possibilities) should be done only in the setting of protocol-based research. The fact that such tests are investigational and do not aid in diagnosis or management should be explained to the patient.

Guidelines 35

In clinical practice, no additional tests, including laboratory tests or neuroimaging studies, can be recommended for the specific purpose of diagnosing the chronic fatigue syndrome. Tests should be directed toward confirming or excluding other etiologic possibilities. Examples of specific tests that do not confirm or exclude the diagnosis of the chronic fatigue syndrome include serologic tests for Epstein-Barr virus, retroviruses, human herpesvirus , enteroviruses, and Candida albicans; tests of immunologic function, including cell population and function studies; and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography) of the head. Conditions That Explain Chronic Fatigue The following conditions exclude a patient from the diagnosis of unexplained chronic fatigue. ·

Any active medical condition that may explain the presence of chronic fatigue, such as untreated hypothyroidism, sleep apnea and narcolepsy, and iatrogenic conditions such as side effects of medication.

·

Any previously diagnosed medical condition whose resolution has not been documented beyond reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness. Such conditions may include previously treated malignancies and unresolved cases of hepatitis B or C virus infection.

·

Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia nervosa.

·

Alcohol or other substance abuse within 2 years prior to the onset of the chronic fatigue and any time afterward.

·

Severe obesity as defined by a body mass index [body mass index = weight in kilograms/(height in meters)2] equal to or greater than 45.

Any unexplained physical examination finding or laboratory or imaging test abnormality that strongly suggests the presence of an exclusionary condition must be resolved before further classification.

36 Chronic Fatigue Syndrome

Conditions That Do Not Adequately Explain Chronic Fatigue The following conditions do not exclude a patient from the diagnosis of unexplained chronic fatigue. ·

Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or nonmelancholic depression, neurasthenia, and multiple chemical sensitivity disorder.

·

Any condition under specific treatment sufficient to alleviate all symptoms related to that condition, and for which the adequacy of treatment has been documented. Such conditions include hypothyroidism for which the adequacy of replacement hormone has been verified by normal thyroid-stimulating hormone levels or asthma in which the adequacy of treatment has been determined by pulmonary function and other testing.

·

Any condition, such as Lyme disease or syphilis, that was treated with definitive therapy before development of chronic symptomatic sequelae.

·

Any isolated and unexplained physical examination finding, or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition. Such conditions include an elevated antinuclear antibody titer that is inadequate to strongly support a diagnosis of a discrete connective tissue disorder without other laboratory or clinical evidence.

Major Classification Categories: Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue Clinically evaluated, unexplained chronic fatigue cases can be separated into either the chronic fatigue syndrome or idiopathic chronic fatigue on the basis of the following criteria. A case of the chronic fatigue syndrome is defined by the presence of the following: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities; and 2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue: self-reported impairment in short-term memory or

Guidelines 37

concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multijoint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours. The method used (for example, a predetermined checklist developed by the investigator or spontaneous reporting by the study participant) to establish the presence of these and any other symptoms should be specified. A case of idiopathic chronic fatigue is defined as clinically evaluated, unexplained chronic fatigue that fails to meet criteria for the chronic fatigue syndrome. The reasons for failing to meet the criteria should be specified.

Subgrouping and Stratification of Major Classification Categories In formal studies, cases of the chronic fatigue syndrome and idiopathic chronic fatigue should be subgrouped before analysis or stratified during analysis by the presence or absence of essential variables, which should be routinely established in all studies. Further subgrouping by optional parameters can be performed according to specific research interests.

Essential Subgrouping Variables ·

Any clinically important coexisting medical or neuropsychiatric condition that does not explain the chronic fatigue. The presence or absence, classification, and timing of onset of neuropsychiatric conditions should be established using published or freely available instruments, such as the Composite International Diagnostic Instrument , the National Institute of Mental Health Diagnostic Interview Schedule, and the Structured Clinical Interview for DSM-III(R).

·

Current level of fatigue, including subjective or performance aspects. These levels should be measured using published or widely available instruments. Examples include instruments by Schwartz and colleagues, Piper and colleagues, Krupp and colleagues, Chalder and colleagues, and Vercoulen and colleagues.

·

Total duration of fatigue.

·

Current level of overall functional performance as measured by published or widely available instruments, such as the Medical Outcomes Study Short Form 36 and the Sickness Impact Profile.

38 Chronic Fatigue Syndrome

Optional Subgrouping Variables Examples of optional variables include: ·

Epidemiologic or laboratory features of specific interest to researchers. Examples include laboratory documentation (or self-reported history) of an infectious illness at the onset of fatiguing illness, a history of rapid onset of illness, or the presence or level of a particular immunologic marker.

·

Measurements of physical function quantified by means such as treadmill testing or motion-sensing devices.

Several general points must be appreciated if these guidelines are to be used as intended. First, the overall purpose of the proposed conceptual framework and guidelines is to foster a more systematic and comprehensive approach toward the collection of data about the chronic fatigue syndrome and similar illnesses. As such, these tools are intended for use as standard references. However, none of the components, including the revised case definition of the chronic fatigue syndrome, can be considered definitive. These research tools will evolve as new knowledge is gained. Second, none of the provisions in these guidelines, especially the definition of idiopathic chronic fatigue and subgroups of the chronic fatigue syndrome, establish new clinical entities. Rather, these definitions were designed to facilitate comparative studies. Finally, general reference to these guidelines should not be substituted for clear and detailed methodologic descriptions when reporting studies. The lack of detailed information about the sources, selection, and evaluation of study participants (including controls), case definitions, and measurement techniques in reports of chronic fatigue syndrome research has contributed substantially to our current difficulties in interpreting research findings. Several specific points about the clinical evaluation are worth emphasizing. The primary purpose of clinically evaluating a person with unexplained fatigue is to identify and treat any underlying and contributing factors. Such an evaluation should begin, whenever possible, before 6 months has elapsed. Because the particulars of any clinical evaluation will vary from patient to patient, our recommendations have been limited to those aspects of clinical evaluation that can be universally applied to all patients. With regard to the clinical psychiatric evaluation of fatigued persons, we consider a mental status examination to be the minimal acceptable level of assessment. Although a structured psychiatric evaluation of all patients with fatigue is highly desirable, we recognize the practical difficulties of implementing such

Guidelines 39

a recommendation. The diagnosis of the chronic fatigue syndrome should not impede the treatment of coexisting disorders, notably depression. Many conditions that are primary causes of chronic fatigue preclude the diagnosis of the chronic fatigue syndrome or idiopathic chronic fatigue. We presented principles for identifying such exclusionary conditions rather than listing them because of the range and complexity of human illnesses. In some instances, however, we identified specific exclusionary conditions. The presence of severe obesity makes the diagnosis of unexplained symptoms, such as fatigue or joint pains, extremely difficult. We distinguished between psychiatric conditions for pragmatic reasons. It is difficult to interpret symptoms typical of the chronic fatigue syndrome in the setting of illnesses such as major psychotic depression or schizophrenia. More importantly, the care of these persons should focus on their chronic psychiatric disorder. On the other hand, we did not use other psychiatric disorders, such as anxiety disorders and less severe forms of depression, as a basis for exclusions. Such psychiatric conditions are highly prevalent in persons with chronic fatigue and the chronic fatigue syndrome, and the exclusion of persons with these conditions would substantially hinder efforts to clarify the role that psychiatric disorders have in fatiguing illnesses. This is a particularly important issue to resolve. These parts of the guidelines concur with the recommendation by a 1991 National Institutes of Health workshop that chronic fatigue cases preceded by some, but not all, psychiatric syndromes can be classified as the chronic fatigue syndrome. The revised case definition for the chronic fatigue syndrome is modeled on the 1988 chronic fatigue syndrome working case definition. The purpose of the revision was to address some of the criticisms of that case definition and to facilitate a more systematic collection of data internationally. We dropped all physical signs as inclusion criteria because all of us agreed that their presence had been unreliably documented in past studies. The required number of symptoms was decreased from 8 to 4 and the list of symptoms was decreased from 11 to 8 because we agreed that multiple symptom criteria had increased the restrictiveness of the 1988 chronic fatigue syndrome working case definition without increasing the homogeneity of cases (Reyes M, et al. Unpublished data). Whether to retain any symptom criteria other than chronic fatigue generated the most disagreement among the authors. Disagreement occurred between those who favored a more restrictive approach (using several symptom criteria), as was done in the 1988 chronic fatigue syndrome working case definition, and those who favored a broader definition of chronic fatigue

40 Chronic Fatigue Syndrome

syndrome (using fewer symptom criteria) as was done in the Australian and British chronic fatigue syndrome case definitions. Those favoring multiple symptoms argued that use of multiple symptoms best reflected the empiric clinical sense of the chronic fatigue syndrome as a distinct entity. Others argued that no symptoms have been shown to be specific for the chronic fatigue syndrome and that some studies suggest that a requirement for multiple symptoms biases the selection of cases toward those with psychiatric disorders. Disagreement over this particular issue underscores the need to establish specific features of the chronic fatigue syndrome and the validity of any chronic fatigue syndrome case definition. Developing an operational definition of fatigue was a problem because the concept of fatigue itself is unclear. In our conception of the chronic fatigue syndrome, the symptom of fatigue refers to severe mental and physical exhaustion, which differs from somnolence or lack of motivation and which is not attributable to exertion or diagnosable disease. We retained the requirement of 6 months’ duration of fatigue to facilitate comparison with earlier cases of the chronic fatigue syndrome. The requirement for an “average daily activity below 50%” was eliminated because this level of impairment is difficult to verify. We defined the condition of “idiopathic chronic fatigue” to focus attention on the need to clarify how other forms of unexplained chronic fatigue are related to the chronic fatigue syndrome. Our strategy for subgrouping major classification categories depends upon the data made available from standardized evaluations of patients with chronic fatigue. Subgrouping by essential variables will encourage the collection of a body of core data. Additional subgrouping by optional variables will allow researchers considerable individual flexibility in defining specific subgroups to answer specific research questions. The name “chronic fatigue syndrome” is the final issue that we wish to address. We sympathize with those who are concerned that this name may trivialize this illness. The impairments associated with chronic fatigue syndrome are not trivial. However, we believe that changing the name without adequate scientific justification will lead to confusion and will substantially undermine the progress that has been made in focusing public, clinical, and research attention on this illness. We support changing the name when more is known about the underlying pathophysiologic process or processes associated with the chronic fatigue syndrome and chronic fatigue.

Guidelines 41

Screening Tests Conditions

for

Detecting

Common

Exclusionary

When a patient visits a physician with a complaint of severe fatigue, the physician should first have the patient describe in detail exactly how he/she is feeling, when the illness began, whether he/she is eating normally, and so forth. A brief physical examination will also be conducted (e.g., temperature, blood pressure.) On the basis of the information obtained, the physician might order a series of tests designed to provide a generalized picture of how the body is functioning. The tests listed below were specifically recommended in the chronic fatigue syndrome (CFS) case definition article by Dr. Fukuda and colleagues to aid physicians in screening patients for CFS.

Complete Blood Count (CBC) A drop of blood contains a number of different cell types, including red blood cells (erythrocytes), macrophages, neutrophils, basophils, eoisinophils, B lymphocytes, and T lymphocytes, among others. Differences in the number or appearance of any of these cell populations might serve as an indication of some underlying illness. The list of possibilities is far too long to delineate here.

Erythrocyte Sedimentation Rate (ESR) This measure indicates the rate at which red blood cells settle out in a tube. An increased rate of sedimentation can serve as sort of general indicator of inflammation in the body.

Alanine Aminotransferase (ALT) The activity of this enzyme is measured in blood plasma. Elevated levels of this enzyme can be an indication of viral hepatitis and other forms of liver disease.

42 Chronic Fatigue Syndrome

Total Protein Measurement of the total protein concentration in plasma. Elevated concentrations reflect dehydration, which might be attributable to vomiting, diarrhea, Addison’s disease, diabetic acidosis, and other conditions.

Albumin Albumin is the most abundant protein found in blood plasma, representing 40 to 60% of the total protein. Reduced levels of albumin may reflect a variety of conditions, including primary liver disease, increased breakdown of macromolecules resulting from tissue damage or inflammation, malabsorption syndromes, malnutrition, and renal diseases.

Globulin Globulins are a diverse group of proteins in the blood, and together represent the second most common proteins (after albumin) in the bloodstream. An elevation in the level of serum globulin can indicate the presence of cirrhosis of the liver.

Alkaline Phosphatase (ALP) Alkaline phosphatases are a family of enzymes that are present throughout the body. Elevated levels of ALP are associated with liver and bile duct disorders, and bone diseases. Calcium Increased levels of plasma calcium may indicate the presence of malignant disease or hyperparathyroidism. Less commonly, it could reflect thyrotoxicosis, vitamin D intoxication, the use of thiazide diuretics, sarcoidosis, and other disorders. Reduced levels of calcium may reflect vitamin D deficiency, renal disease, hypoparathyroidism, magnesium deficiency and other disorders.

Guidelines 43

Phosphorus Increased levels of plasma phosphate ion may indicate imminent renal failure, hypoparathyroidism, acromegaly, excessive phosphate intake, and vitamin D intoxication. Sharply decreased levels of plasma phosphate may reflect vitamin D deficiency, primary hyperparathyroidism, magnesium deficiency, and diabetic ketoacidosis.

Glucose Elevated blood glucose levels may be an indication of diabetes mellitus. Lower-than-normal blood glucose levels (hypoglycemia) can be caused in a variety of ways, often transiently, and must be examined under specific clinical conditions before relating this finding to any clinical disorders. Blood Urea Nitrogen (BUN) Various renal diseases can lead to an increase in the concentration of urea in blood plasma. Electrolytes This test measures the levels of charged ions dissolved in the blood and urine, including sodium, potassium, calcium, magnesium, chloride, bicarbonate, phosphate, sulfate, and lactate. Virtually all the metabolic processes in the body are dependent on the presence of these charged ions, the concentrations of which are tightly controlled. Deviations from normal levels of each of these cations can reflect a wide variety of clinical problems, too numerous to detail here.

Creatinine Elevated levels of plasma creatinine may indicate impaired renal function.

Thyroid Stimulating Hormone (TSH) This is a test of thyroid function. Higher-than-normal levels of TSH may indicate hypothyroidism and lower-than-normal levels may suggest

44 Chronic Fatigue Syndrome

hyperthyroidism. In rare instances, elevated TSH levels may be caused by pituitary tumors.

Urinalysis Urine may be examined for a variety of diagnostic indicators, including amylase, bilirubin, creatinine, sugars, g-glutamyl transferase, hemoglobin, lactate dehydrogenase, osmolality, electrolytes, myoglobin, protein, urea, and many more. Elevated amylase levels can indicate pancreatic disease; increased urine bilirubin levels signal liver damage or disease; high serum gglutamyl transferase suggests biliary obstruction, cholangitis, cholecyctitis and alcoholic cirrhosis; increased lactate dehydrogenase in urine is associated with glomerulonephritis, systemic lupus erythematosus, diabetic nephrosclerosis, and bladder and kidney malignancies; and so forth.

Example of a Clinical Scenario Requiring Further Laboratory Testing Patients with unusual findings in the above set of laboratory tests probably have an underlying disorder other than CFS that the physician may successfully diagnose with further testing. For example, if a patient had low levels of serum albumin together with a higher-than-normal result on the blood urea nitrogen test, kidney disease would be suspected. The physician might then choose to repeat the relevant tests and possibly add new ones aimed specifically at elucidating renal disease. However, more than 90% of patients presenting with severe fatigue will test at normal levels for the series of laboratory tests listed above. Assuming that there is nothing in the physical examination or in the personal history of the patient that suggests a clear direction to the doctor, no further laboratory testing is recommended.

Experimental Tests That Should Not Be Used for the Clinical Diagnosis of CFS There are a number of tests that, while they may be under legitimate investigation in CFS studies, have no proven utility in the diagnosis of CFS. Some of these are included below.

Guidelines 45

Serologic tests ·

Epstein-Barr virus (EBV): This herpesvirus is associated with infectious mononucleosis. EBV was initially considered the most likely candidate as the causative agent in CFS. More recent studies make it clear that many CFS cases have no association with EBV infection. Therefore, serologic testing for EBV has no utility for diagnosing CFS.

·

Enteroviruses: This group of viruses is named because of their tendency to enter and infect individuals through the gastrointestinal tract (enteron is the Greek word for intestine), but they are mostly associated with clinical conditions affecting the nervous system. Examples of diseases caused by these viruses are poliomyelitis, aseptic meningitis, and encephalitis. Some medical researchers believe that these viruses may cause milder forms of disease in a subset of patients, resulting in muscle weakness or fatigue rather than, for example, severe paralytic disease. Epidemiologic studies of enterovirus infection in CFS patients have been inconclusive, and while some patients’ fatigue might be explained by the presence of an enterovirus, it is not associated with all or even most CFS patients examined thus far. As such, serologic tests, polymerase chain reaction examination of muscle biopsy specimens, and other methods aimed at detecting enterovirus infections are not useful in the diagnosis of CFS.

·

Retroviruses: One published account reported evidence that DNA sequences apparently similar to human T lymphotropic virus type II (HTLV-II) could be detected in the white blood cells of CFS patients by using a technique known as the polymerase chain reaction, or PCR. Several efforts to repeat this study under blinded conditions were unsuccessful. Additional efforts indicate that none of the identified retroviruses are associated with CFS. PCR analysis for human retrovirus DNA is not useful for the diagnosis of CFS.

·

Human herpesvirus 6: One report in the literature suggested that human herpesvirus type 6 (HHV-6), and in particular actively replicating HHV6, may be associated with CFS. Subsequent efforts to confirm an association between the active replication of HHV-6 and CFS have been unsuccessful. HHV-6 is an extremely common infection and is present in nearly 100% of humans by age three years. It is not useful as a diagnostic marker for CFS.

·

Candida albicans: Like HHV-6, this yeast is so common in humans that it is virtually ubiquitous. The CDC case-control study of CFS, among others, suggests that there is no causal association between C. albicans and CFS. It is therefore not useful as a diagnostic marker.

46 Chronic Fatigue Syndrome

Immunologic tests ·

Natural killer (NK) cell assays: Some studies have reported a trend among CFS patients to have reduced NK cell activity and/or reduced NK cell numbers. Some studies, including the CDC’s case-control study of CFS, have failed to demonstrate any relationship between NK cell activity and CFS. Even those studies that demonstrated a trend did not observe differences between CFS patients and controls that were sufficient to permit the use of NK cell assays as a diagnostic tool for CFS, and there were individual CFS patients in all of those studies who exhibited apparently normal NK cell function and numbers. As such, NK cell assays have no value as a diagnostic marker for CFS.

·

Cytokine assays: Cytokines are hormone-like molecules produced by one cell to influence the behavior of another. These proteins are essential to the regulation of virtually every system in the body and are central to the coordination of the immune system. Various reports have suggested that elevated levels of certain immune system cytokines, e.g., interleukin-1 and interleukin-6, are associated with CFS. Findings among various research groups are inconsistent -- some observed a trend toward elevated cytokines and others did not -- but, as with NK cell assays, in no case were differences observed between CFS cases and controls sufficiently large to be diagnostic. Nor were such elevations uniformly observed among CFS patients. No cytokine has been identified to date that serves as a useful diagnostic marker for CFS.

·

Cell marker assays: At least one study observed an elevation in the number of T cells expressing activation markers among the most severely ill CFS patients. T cell activation markers normally are increased in number on the surface of T cells during periods when the immune system has been engaged in responding to some infectious disease. That work has not been confirmed, and no such trend has been observed in other studies of CFS patients. As such, no set of immune cell markers has yet been identified that serves as a diagnostic tool for CFS.

Imaging Tests ·

Magnetic resonance imaging scan; single-photon emission computed tomography: Some CFS researchers have observed apparent differences in the cranial blood flow between CFS patients and controls. These studies remain unconfirmed, and imaging tests should not be performed as a diagnostic technique for CFS.

Guidelines 47

Additional Experimental Tests ·

Tilt table test: This test involves strapping the patient to a table that can be tilted at various angles. The patient’s blood pressure is measured, sometimes before and after administration of medication that hastens the heartbeat, at several angles of inclination and declination. In one study most CFS patients were found to exhibit a marked decrease in blood pressure in the tilt table test.

For More Information Reports Listed below are reports covering various aspects of CFS: ·

FY 2000 Overview of the Chronic Fatigue Syndrome Program: http://www.cdc.gov/ncidod/diseases/cfs/reseach/research6.htm

·

External Peer Review Group Report: Executive Summary: http://www.cdc.gov/ncidod/diseases/cfs/reseach/research7.htm Publications

Listed below are a variety of publications addressing the research, definition, and treatment of Chronic Fatigue Syndrome (CFS). ·

Case Definition of CFS: http://www.cdc.gov/ncidod/diseases/cfs/publications/case_definition.htm

·

Studies of Causes of CFS: http://www.cdc.gov/ncidod/diseases/cfs/publications/causes.htm

·

CFS Surveillance Studies: http://www.cdc.gov/ncidod/diseases/cfs/publications/surveillance.htm

·

Cluster Investigations: http://www.cdc.gov/ncidod/diseases/cfs/publications/cluster_invest.htm

·

CFS in Adolescents: http://www.cdc.gov/ncidod/diseases/cfs/publications/adolescents.htm

·

Recovery from CFS: http://www.cdc.gov/ncidod/diseases/cfs/publications/recovery.htm

·

Molecular Epidemiology Program: http://www.cdc.gov/ncidod/diseases/cfs/publications/molecular_epi.htm

48 Chronic Fatigue Syndrome

·

Management of CFS: http://www.cdc.gov/ncidod/diseases/cfs/publications/management.htm CFS Definition

The 1988 chronic fatigue syndrome (CFS) working case definition (Holmes, et al) did not effectively distinguish CFS from other types of unexplained fatigue. For this reason, it was decided during a 1993 meeting of CFS investigators to develop a logical revision of that definition. For more information on the CFS definition revision, see the following: ·

Rational for Revising the CFS Case Definition: http://www.cdc.gov/ncidod/diseases/cfs/defined/defined1.htm

·

The Revised Case Definition (abridged version): http://www.cdc.gov/ncidod/diseases/cfs/defined/defined2.htm

·

Complete Text of Revised Case Definition as Published: http://www.cdc.gov/ncidod/diseases/cfs/defined/defined3.htm

·

Screening Tests for Detecting Common Exclusionary Conditions: http://www.cdc.gov/ncidod/diseases/cfs/defined/defined5.htm NIH Institutes

The following NIH institutes offer information on CFS: National Center for Infectious Diseases Centers for Disease Control and Prevention Mailstop A15 Atlanta, GA 30333 National Institute of Allergy and Infectious Diseases National Institutes of Health Bethesda, MD 20892 The CDC also maintains a 24-hour voice information system on CFS: (888) 232-3228. NIAID Internet site: www.niaid.nih.gov/publications/cfs.htm

More Guideline Sources The guideline above on chronic fatigue syndrome is only one example of the kind of material that you can find online and free of charge. The remainder

Guidelines 49

of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to chronic fatigue syndrome. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with chronic fatigue syndrome. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.

Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on chronic fatigue syndrome and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive:

50 Chronic Fatigue Syndrome

·

Getting the Most Out of Your Medicines: A Guide for Patients With FMS/CFS (Fibromyalgia Syndrome/Chronic Fatigue Syndrome) Source: Tucson, AZ: Fibromyalgia Network. 2000. 82 p. Contact: Available from Fibromyalgia Network. P.O. Box 31750, Tucson, AZ 85751-1750. (800) 853-2929 or (520) 290-5508. Fax (520) 290-5550. Website: www.fmnetnews.com. Price: $10.00. Summary: This booklet provides people who have fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) with information on medications used to improve sleep, reduce pain, and minimize fatigue. The booklet explains the role of the central nervous system in controlling pain, sleep, and neuroendocrine/stress functions. This is followed by a discussion of the mechanism of action, dosage, and side effects of various drugs, including tricyclic antidepressants, benzodiazepines, muscle relaxants, sleeping aids, selective serotonin reuptake inhibitors, mild stimulants and neuromodulating drugs, nonsteroidal anti-inflammatory drugs, immune system modulators, calcium and sodium channel blockers, pain relievers, and antiyeast regimens. Other treatment modalities discussed include combination therapies, trigger point injections, and nutritive supplements. In addition, the booklet describes common associated syndromes and their treatment, including temporomandibular dysfunction syndrome, chronic headaches, irritable bowel and bladder syndromes, and dysautonomia. The booklet concludes with information on medicines for the future. A list of additional information resources is included. 6 figures, 4 tables, and 82 references.

·

Facts About Chronic Fatigue Syndrome Source: Atlanta, GA: Centers for Disease Control and Prevention. 1994. 18 p.

Contact: Available from National Chronic Fatigue Syndrome and Fibromyalgia Association. 3521 Broadway, Suite 222, Kansas City, MO 64111. (816) 931-4777; FAX (816) 931-5557. Price: Free. Summary: This brochure presents general information about chronic fatigue syndrome (CFS). The clinical aspects and demographics of CFS, possible causes of CFS, diagnosis, abnormalities of the immune system in patients with CFS, and treatments are discussed in a question-andanswer format. Appendixes list the diagnostic criteria for evaluating patients with suspected CFS, as well as medications, herbal preparations and miscellaneous drug therapies that have been used to treat patients with CFS.

Guidelines 51

·

Guide for Physicians When Considering a Diagnosis of Chronic Fatigue Syndrome in Children Source: Kansas City, MO: National Chronic Fatigue Syndrome and Fibromyalgia Association. [6 p.]. Contact: Available from National Chronic Fatigue Syndrome and Fibromyalgia Association. 3521 Broadway, Suite 222, Kansas City, MO 64111. (816) 931-4777; FAX (816) 931-5557. Price: Free. Summary: This brochure presents general diagnostic guidelines for evaluating children aged 6 to 18 years with suspected chronic fatigue syndrome (CFS). The types of symptoms to look for and their onset are discussed. The effects of CFS and prognosis are described for two groups of children: ages 6 to 12 years and ages 12 to 18 years.

·

Chronic Fatigue Syndrome: The Thief of Vitality Source: Kansas City, MO: National Chronic Fatigue Syndrome and Fibromyalgia Association. [8 p.]. Contact: Available from National Chronic Fatigue Syndrome and Fibromyalgia Association. 3521 Broadway, Suite 222, Kansas City, MO 64111. (816) 931-4777; FAX (816) 931-5557. Price: $0.25. Summary: This brochure presents general information about chronic fatigue syndrome (CFS). Diagnostic criteria, treatment for CFS, drug therapies, myths about CFS, prognosis, and current research into the causes of CFS are discussed. Resources to contact for additional information are listed.

·

Chronic fatigue and immune dysfunction syndrome physician information packet Source: Charlotte, NC: Chronic Fatigue and Immune Dysfunction Syndrome Association. 1992. 14 items. Contact: Available from Chronic Fatigue and Immune Dysfunction Syndrome Association, P.O. Box 220398, Charlotte, NC 28222. Summary: This information package includes factual information on chronic fatigue and immune dysfunction syndrome (also known as chronic fatigue syndrome, myalgic encephalomyelitus or M.E., chronic Epstein-Barr virus, and 'yuppie flu'), as well as information on the Chronic Fatigue and Immune Dysfunction Syndrome Association and a sample issue of its journal, the CFIDS Chronicle. Reprints of three journal articles on the syndrome from other sources are included. The complex illness is characterized by incapacitating fatigue, neurological problems, and a constellation of symptoms that can resemble many disorders,

52 Chronic Fatigue Syndrome

including: mononucleosis, multiple sclerosis, fibromyalgia, AIDS-related complex, Lyme disease, post-polio syndrome, and autoimmune diseases such as lupus. The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “chronic fatigue syndrome” or synonyms.

Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·

Chronic Fatigue Syndrome Summary: This fact sheet on chronic fatigue syndrome describes the illness and its causes, symptoms, diagnosis, and management. Source: National Institute of Allergy and Infectious Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=240

·

Chronic Fatigue Syndrome (CFS) Home Page - Centers for Disease Control and Prevention (CDC) Summary: The cause of Chronic Fatigue Syndrome (CFS) has not been identified, but there are several theories. Source: National Center for Infectious Diseases, Centers for Disease Control and Prevention http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=1385

Guidelines 53

·

Chronic Fatigue Syndrome: Clinical Aspects and Demographics Summary: General information about CFS -- a description, its causes and prognosis, treatment options, disease management and more. Source: National Center for Infectious Diseases, Centers for Disease Control and Prevention http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2354

·

Glossary of Medical and Scientific Terms Related to Chronic Fatigue Syndrome Summary: An online glossary of scientific and medical terms associated with CFS and related disorders. Source: National Center for Infectious Diseases, Centers for Disease Control and Prevention http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2137

·

Providing Medical Evidence To The Social Security Administration For Individuals With Chronic Fatigue Syndrome: A Guide For Health Professionals Summary: When an individual with Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), applies for Social Security disability benefits, we must decide whether Source: Social Security Administration http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=740

·

Young Persons With CFIDS (YPWCs) Website Summary: This site presents information, research & encouragement for young persons with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and related disorders. Source: CFIDS Association of America http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=5047

54 Chronic Fatigue Syndrome

The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to chronic fatigue syndrome. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html.

Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats

·

drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html

·

Family Village: http://www.familyvillage.wisc.edu/specific.htm

·

Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/

·

Med Help International: http://www.medhelp.org/HealthTopics/A.html

·

Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/

·

Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/

·

WebMDÒHealth: http://my.webmd.com/health_topics

Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter:

Guidelines 55

Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] Acyclovir: Functional analog of the nucleoside guanosine. It acts as an antimetabolite, especially in viruses. It is used as an antiviral agent, especially in herpes infections. [NIH] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a neurotransmitter. [NIH] Adverse: Harmful. [EU] Alanine: A non-essential amino acid that occurs in high levels in its free state in plasma. It is produced from pyruvate by transamination. It is involved in sugar and acid metabolism, increases immunity, and provides energy for muscle tissue, brain, and the central nervous system. [NIH] Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Amnesia: Lack or loss of memory; inability to remember past experiences. [EU]

Anorexia: Lack or loss of the appetite for food. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Antidepressant: An agent that stimulates the mood of a depressed patient, including tricyclic antidepressants and monoamine oxidase inhibitors. [EU] Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include

56 Chronic Fatigue Syndrome

increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Anxiolytic: An anxiolytic or antianxiety agent. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Aseptic: Free from infection or septic material; sterile. [EU] Aspartame: Flavoring agent sweeter than sugar, metabolized as phenylalanine and aspartic acid. [NIH] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Astemizole: A long-acting, non-sedative antihistaminic used in the treatment of seasonal allergic rhinitis, asthma, allergic conjunctivitis, and chronic idiopathic urticaria. The drug is well tolerated and has no anticholinergic side effects. [NIH] Atenolol: A cardioselective beta-adrenergic blocker possessing properties and potency similar to propranolol, but without a negative inotropic effect. [NIH]

Autonomic: Self-controlling; functionally independent. [EU] Basophils: Granular leukocytes characterized by a relatively pale-staining, lobate nucleus and cytoplasm containing coarse dark-staining granules of variable size and stainable by basic dyes. [NIH] Benzodiazepines: A two-ring heterocyclic compound consisting of a benzene ring fused to a diazepine ring. Permitted is any degree of hydrogenation, any substituents and any H-isomer. [NIH] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Bilirubin: A bile pigment that is a degradation product of heme. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Bupropion: A unicyclic, aminoketone antidepressant. The mechanism of its therapeutic actions is not well understood, but it does appear to block dopamine uptake. The hydrochloride is available as an aid to smoking cessation treatment. [NIH] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Cholangitis: Inflammation of a bile duct. [EU]

Guidelines 57

Chronic: Persisting over a long period of time. [EU] Cirrhosis: Liver disease characterized pathologically by loss of the normal microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU] Clonazepam: An anticonvulsant used for several types of seizures, including myotonic or atonic seizures, photosensitive epilepsy, and absence seizures, although tolerance may develop. It is seldom effective in generalized tonic-clonic or partial seizures. The mechanism of action appears to involve the enhancement of gaba receptor responses. [NIH] Coenzyme: An organic nonprotein molecule, frequently a phosphorylated derivative of a water-soluble vitamin, that binds with the protein molecule (apoenzyme) to form the active enzyme (holoenzyme). [EU] Cognition: Intellectual or mental process whereby an organism becomes aware of or obtains knowledge. [NIH] Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Cranial: Pertaining to the cranium, or to the anterior (in animals) or superior (in humans) end of the body. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is usually progressive, and initially spares the level of consciousness. [NIH] Desipramine: A tricyclic dibenzazepine compound that potentiates neurotransmission. Desipramine selectively blocks reuptake of norepinephrine from the neural synapse, and also appears to impair serotonin transport. This compound also possesses minor anticholingeric activity, through its affinity to muscarinic receptors. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH]

58 Chronic Fatigue Syndrome

Echinacea: A genus of perennial herbs used topically and internally. It contains echinacoside, glycosides, inulin, isobutyl amides, resin, and sesquiterpenes. [NIH] Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Empiric: Empirical; depending upon experience or observation alone, without using scientific method or theory. [EU] Encephalitis: Inflammation of the brain. [EU] Encephalomyelitis: A general term indicating inflammation of the brain and spinal cord, often used to indicate an infectious process, but also applicable to a variety of autoimmune and toxic-metabolic conditions. There is significant overlap regarding the usage of this term and encephalitis in the literature. [NIH] Enema: A clyster or injection; a liquid injected or to be injected into the rectum. [EU] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Erythrocytes: Red blood cells. Mature erythrocytes are non-nucleated, biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Fludrocortisone: activity. [NIH]

A synthetic mineralocorticoid with anti-inflammatory

Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Germanium: A rare metal element with a blue-gray appearance and atomic symbol Ge, atomic number 32, and atomic weight 72.59. [NIH] Ginseng: An araliaceous genus of plants that contains a number of pharmacologically active agents used as stimulants, sedatives, and tonics, especially in traditional medicine. [NIH] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic

Guidelines 59

streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hepatitis: Inflammation of the liver. [EU] Homogeneous: Consisting of or composed of similar elements or ingredients; of a uniform quality throughout. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hydroxyurea: An antineoplastic agent that inhibits DNA synthesis through the inhibition of ribonucleoside diphosphate reductase. [NIH] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Hyperthyroidism: 1. excessive functional activity of the thyroid gland. 2. the abnormal condition resulting from hyperthyroidism marked by increased metabolic rate, enlargement of the thyroid gland, rapid heart rate, high blood pressure, and various secondary symptoms. [EU] Hypotension: Abnormally low blood pressure; seen in shock but not necessarily indicative of it. [EU] Hypothyroidism:

Deficiency of thyroid activity. In adults, it is most

60 Chronic Fatigue Syndrome

common in women and is characterized by decrease in basal metabolic rate, tiredness and lethargy, sensitivity to cold, and menstrual disturbances. If untreated, it progresses to full-blown myxoedema. In infants, severe hypothyroidism leads to cretinism. In juveniles, the manifestations are intermediate, with less severe mental and developmental retardation and only mild symptoms of the adult form. When due to pituitary deficiency of thyrotropin secretion it is called secondary hypothyroidism. [EU] Iatrogenic: Resulting from the activity of physicians. Originally applied to disorders induced in the patient by autosuggestion based on the physician's examination, manner, or discussion, the term is now applied to any adverse condition in a patient occurring as the result of treatment by a physician or surgeon, especially to infections acquired by the patient during the course of treatment. [EU] Ibuprofen: A nonsteroidal anti-inflammatory agent with analgesic properties used in the therapy of rheumatism and arthritis. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Interferons: Proteins secreted by vertebrate cells in response to a wide variety of inducers. They confer resistance against many different viruses, inhibit proliferation of normal and malignant cells, impede multiplication of intracellular parasites, enhance macrophage and granulocyte phagocytosis, augment natural killer cell activity, and show several other immunomodulatory functions. [NIH] Intoxication: Poisoning, the state of being poisoned. [EU] Ketoacidosis: Acidosis accompanied by the accumulation of ketone bodies (ketosis) in the body tissues and fluids, as in diabetic acidosis. [EU] Loratadine: A second-generation histamine H1 receptor antagonist used in the treatment of allergic rhinitis and urticaria. Unlike most classical antihistamines it lacks central nervous system depressing effects such as drowsiness. [NIH] Lorazepam: An anti-anxiety agent with few side effects. It also has hypnotic, anticonvulsant, and considerable sedative properties and has been proposed as a preanesthetic agent. [NIH] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]

Guidelines 61

Malaise: A vague feeling of bodily discomfort. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Manifest: Being the part or aspect of a phenomenon that is directly observable : concretely expressed in behaviour. [EU] Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Mental: Pertaining to the mind; psychic. 2. (L. mentum chin) pertaining to the chin. [EU] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Modulator: A specific inductor that brings out characteristics peculiar to a definite region. [EU] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]

Myoglobin: A conjugated protein which is the oxygen-transporting pigment of muscle. It is made up of one globin polypeptide chain and one heme group. [NIH] Naproxen: An anti-inflammatory agent with analgesic and antipyretic properties. Both the acid and its sodium salt are used in the treatment of rheumatoid arthritis and other rheumatic or musculoskeletal disorders, dysmenorrhea, and acute gout. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neurasthenia: A mental disorder characterized by chronic fatigue and concomitant physiologic symptoms. [NIH] Neurologic: Pertaining to neurology or to the nervous system. [EU] Nitrogen: An element with the atomic symbol N, atomic number 7, and atomic weight 14. Nitrogen exists as a diatomic gas and makes up about 78% of the earth's atmosphere by volume. It is a constituent of proteins and nucleic acids and found in all living cells. [NIH] Nortriptyline:

A metabolite of amitryptyline that is also used as an

62 Chronic Fatigue Syndrome

antidepressive agent. Nortriptyline is used in major depression, dysthymia, and atypical depressions. [NIH] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Osmolality: The concentration of osmotically active particles in solution expressed in terms of osmoles of solute per kilogram of solvent. The osmolality is directly proportional to the colligative properties of solutions; osmotic pressure, boiling point elevation, freezing point depression, and vapour pressure lowering. [EU] Paroxetine: A serotonin uptake inhibitor that is effective in the treatment of depression. [NIH] Pathogen: Any disease-producing microorganism. [EU] Pharmacologic: Pertaining to pharmacology or to the properties and reactions of drugs. [EU] Piroxicam: 4-Hydroxy-2-methyl-N-2-pyridyl-2H-1,2-benzothiazine-3carboxamide 1,1-dioxide. A non-steroidal anti-inflammatory agent that is well established in the treatment of rheumatoid arthritis and osteoarthritis. Its usefulness has also been demonstrated in the treatment of musculoskeletal disorders, dysmenorrhea, and postoperative pain. Its long half-life enables it to be administered once daily. The drug has also been shown to be effective if administered rectally. Gastrointestinal complaints are the most frequently reported side effects. [NIH] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Psychomotor: Pertaining to motor effects of cerebral or psychic activity. [EU] Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]

Pulmonary: Pertaining to the lungs. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of

Guidelines 63

the heart as it contracts. [NIH] Quercetin: Aglucon of quercetrin, rutin, and other glycosides. It is widely distributed in the plant kingdom, especially in rinds and barks, clover blossoms, and ragweed pollen. [NIH] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Reactivation: The restoration of activity to something that has been inactivated. [EU] Relaxant: 1. lessening or reducing tension. 2. an agent that lessens tension. [EU]

Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Sedimentation: The act of causing the deposit of sediment, especially by the use of a centrifugal machine. [EU] Selenium: An element with the atomic symbol Se, atomic number 34, and

64 Chronic Fatigue Syndrome

atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Sertraline: A selective serotonin uptake inhibitor that is used in the treatment of depression. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Somatic: 1. pertaining to or characteristic of the soma or body. 2. pertaining to the body wall in contrast to the viscera. [EU] Somnolence: Sleepiness; also unnatural drowsiness. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Stimulant: 1. producing stimulation; especially producing stimulation by causing tension on muscle fibre through the nervous tissue. 2. an agent or remedy that produces stimulation. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]

Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Tricyclic: Containing three fused rings or closed chains in the molecular structure. [EU] Tryptophan: An essential amino acid that is necessary for normal growth in infants and for nitrogen balance in adults. It is a precursor serotonin and niacin. [NIH] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] Viruses: Minute infectious agents whose genomes are composed of DNA or

Guidelines 65

RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU]

Seeking Guidance 67

CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with chronic fatigue syndrome. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.10 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with chronic fatigue syndrome. The chapter ends with a discussion on how to find a doctor that is right for you.

Associations and Chronic Fatigue Syndrome As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.11 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 11 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 10

68 Chronic Fatigue Syndrome

influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·

American Academy of Allergy Asthma and Immunology Address: American Academy of Allergy Asthma and Immunology 611 East Wells Street, Milwaukee, WI 53202 Telephone: (414) 272-6071 Toll-free: (800) 822-2762 Fax: (414) 276-3349 Email: [email protected] Web Site: http://www.aaaai.or Background: The American Academy of Allergy, Asthma and Immunology (AAAAI) is an international, not-for-profit professional medical specialty organization representing allergists, clinical immunologists, allied health professionals, and other physicians with a special interest in allergy and immunology. Established in 1943 by the merger of the American Association for the Study of Allergy and the Association for the Study of Asthma and Allied Conditions, the AAAAI is dedicated to advancing the knowledge and practice of allergy, fostering the education of students and the public, encouraging union and cooperation among those working in the field, and promoting and stimulating research and the study of allergic diseases. The AAAAI is currently organized into several major 'interest sections' consisting of Asthma, Rhinitis, and Other Respiratory Diseases; Basic and Clinical Immunology; Dermatologic Diseases; Environmental and Occupational Disorders; Food and Drug Reactions and Anaphylaxis; and Mechanisms of Allergy. The AAAAI also engages in patient advocacy and lobbying activities, provides physician referrals, engages in patient education, and provides a variety of informational materials. The Academy currently has more than 5,400 members in the United States, Canada, and over 40 additional countries. Relevant area(s) of interest: Chronic Fatigue Syndrome

Seeking Guidance 69

·

American Autoimmune Related Diseases Association, Inc Address: American Autoimmune Related Diseases Association, Inc. Michigan National Bank Building, 15475 Gratiot Avenue, Detroit, MI 48205 Telephone: (313) 371-8600 Toll-free: (800) 598- 4668 Fax: (313) 371-6002 Email: [email protected] Web Site: http://www.aarda.org Background: The American Autoimmune Related Diseases Association, Inc. (AARDA) is a national not-for-profit voluntary health agency dedicated to bringing a national focus to autoimmunity, a major cause of serious chronic diseases. The Association was founded for the purposes of supporting research to find a cure for autoimmune diseases and providing services to affected individuals. In addition, the Association's goals include increasing the public's awareness that autoimmunity is the cause of more than 80 serious chronic diseases; bringing national focus and collaborative effort among state and national voluntary health groups that represent autoimmune diseases; and serving as a national advocate for individuals and families affected by the physical, emotional, and financial effects of autoimmune disease. The American Autoimmune Related Diseases Association produces educational and support materials including fact sheets, brochures, pamphlets, and a newsletter entitled 'In Focus.'. Relevant area(s) of interest: Chronic Fatigue Syndrome

·

ME (Myalgic Encephalomyelitis) Association of Canada Address: ME (Myalgic Encephalomyelitis) Association of Canada 246 Queen Street, Suite 200, Ottawa, Ontario, K1P 5E4, Canada Telephone: (613) 563-1565 Toll-free: (800) 598- 4668 Fax: (613) 567-0614 Email: [email protected] Web Site: http://www.mecan.c Background: The ME (Myalgic Encephalomyelitis) Association of Canada is a national, nonprofit association dedicated to assisting individuals affected by myalgic encephalomyelitis, their families, and professionals. Myalgic encephalomyelitis, which is known as chronic fatigue syndrome in the United States, is characterized by persistent, disabling fatigue accompanied by some combination of impaired concentration or memory, muscle pain, low fever, sore throat, and headaches, with such

70 Chronic Fatigue Syndrome

symptoms not being attributable to any other known underlying cause. Symptoms may vary from case to case, and the cause of the condition is unknown. To help fulfill its mission and objectives, the ME Association of Canada is committed to serving as a clearinghouse of information, encouraging research, promoting public awareness, and providing support services. The Association, which was founded in 1987, currently consists of approximately 180 chapters and support groups across Canada as well as about 3,500 members in all Canadian provinces and territories. ME support groups provide affected individuals and family members with a forum for discussion, information exchange, and mutual support. Some ME support groups have as few as a dozen members and meet occasionally, whereas others have as many as 500 members, conduct regular meetings with guest speakers and video presentations, and produce regular newsletters. The ME Association of Canada provides a variety of programs and services, including offering referrals to area support groups, providing counseling to affected individuals and family members, offering legal assistance on such matters as disability pension and tax claims, and publishing educational literature. The ME Association of Canada also produces a monthly newsletter entitled 'The MEssenger' and maintains a web site on the Internet. Relevant area(s) of interest: Chronic Fatigue Syndrome ·

Mental Health Net Address: Mental Health Net Web Site on the Internet, Telephone: (414) 272-6071 Toll-free: (800) 822-2762 Web Site: http://www.cmhc.com Background: Mental Health Net, Inc., a not-for-profit mental health organization, provides online information and educational resources to the global community. Its web site, Mental Health Net, serves as a comprehensive guide to mental health information on the Internet. The site, which features over 6,000 individual resources, provides information for affected individuals, family members, and health care professionals. Such information includes material on specific mental health disorders and other health conditions; information on organizations that may provide additional support and information; professional resources; the organization's mental health magazine entitled 'Perspectives,' which is directed toward patients, family members, consumers, mental health professionals, administrators, and others associated with the mental health field; journals; and more. Mental Health Net also provides dynamic links to other helpful mental health and general health-related sites on the Web. It uses its own four-star rating system for such sites to

Seeking Guidance 71

rate the quality of their content, their presentation, their ease of use, and online users' overall experience when visiting the site. Mental Health Net also includes discussion forums, opinion polls, and other interactive opportunities for online visitors. Relevant area(s) of interest: Chronic Fatigue Syndrome ·

Myalgic Encephalomyelitis Association Address: Myalgic Encephalomyelitis Association 4 Corringham Road, Stanford le Hope, Essex, SS17 OAH, United Kingdom Telephone: 01375 361013 Toll-free: (800) 598- 4668 Fax: 01375 360256 Email: [email protected] Web Site: http://www.cix.co.uk/~deepings Background: The Myalgic Encephalomyelitis Association is a nonprofit organization in the United Kingdom dedicated to providing information, support, and resources to individuals affected by myalgic encephalomyelitis, their family members, and health care professionals. Myalgic encephalomyelitis (ME) is a condition that is known as chronic fatigue syndrome in the United States. ME is characterized by persistent, disabling fatigue accompanied by some combination of impaired concentration or memory, muscle pain, low fever, sore throat, and headaches, with such symptoms not being attributable to any other known underlying cause. Symptoms may vary from case to case, and the cause of the condition is unknown. The ME Association was established in 1976 and currently has a national office, regional offices in Northern Ireland and Scotland, and a network of approximately 400 self-help groups throughout the UK. ME self-help groups provide a local point of contact for members; conduct regular meetings and events, often including speakers; and provide referrals to appropriate local services that may be of assistance to members. Local self-help groups also promote public awareness by establishing contacts with the media and other support organizations; work with the national ME Association to form relationships with health authorities, medical professionals, and others; and often provide a local telephone network and local newsletter. In addition, the national ME Association offers an Information Line that provides information concerning the management of ME, available services for affected individuals, benefits, insurance, research, and other areas; has a 'Listening Ear Service' that offers confidential assistance and counseling with trained volunteers; and publishes informational leaflets and other materials for affected individuals, family members, and medical and other professionals. The national ME Association also funds

72 Chronic Fatigue Syndrome

research into the cause and treatment of ME, publishes a quarterly newsletter entitled 'Perspectives,' and maintains a web site on the Internet. ·

National Chronic Fatigue and Fibromyalgia Association Address: National Chronic Fatigue and Fibromyalgia Association P.O. Box 18426, Kansas City, MO 64133 Telephone: (816) 313-2000 Fax: (816) 524-6782 Email: [email protected] Background: The National Chronic Fatigue Syndrome and Fibromyalgia Association is a voluntary health organization that was incorporated in 1988. The Association was formed to educate and inform the public about the n ature and impact of Chronic Fatigue Syndrome and related disorders. In 1993, Fibromyalgia was added to the organization's educational efforts. The primary focus of The National Chronic Fatigue Syndrome and Fibromyalgia Association is to offer scientifically accurate information to people with Chronic Fatigue Syndrome and Fibromyalgia. Brochures, booklets, and videos are available from the organization. A periodic newsletter and fact sheet are also produced and distributed by the organization. Relevant area(s) of interest: Chronic Fatigue Syndrome

Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.

The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about chronic fatigue syndrome. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.

Seeking Guidance 73

DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “chronic fatigue syndrome” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.

The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “chronic fatigue syndrome”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “chronic fatigue syndrome” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with chronic fatigue syndrome. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “chronic fatigue syndrome” (or a synonym) in the search box. Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site:

74 Chronic Fatigue Syndrome

http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective.

Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with chronic fatigue syndrome must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:12 ·

If you are in a managed care plan, check the plan’s list of doctors first.

·

Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.

·

Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.

·

Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.

Additional steps you can take to locate doctors include the following: ·

Check with the associations listed earlier in this chapter.

·

Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.

·

The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at

12

This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

Seeking Guidance 75

http://www.abms.org/newsearch.asp.13 You can also contact the ABMS by phone at 1-866-ASK-ABMS. ·

You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm.

If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.

Selecting Your Doctor14 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·

Give me a chance to ask questions about chronic fatigue syndrome?

·

Really listen to my questions?

·

Answer in terms I understood?

·

Show respect for me?

·

Ask me questions?

·

Make me feel comfortable?

·

Address the health problem(s) I came with?

·

Ask me my preferences about different kinds of treatments for chronic fatigue syndrome?

While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 14 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 13

76 Chronic Fatigue Syndrome

·

Spend enough time with me?

Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.

Working with Your Doctor15 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·

You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.

·

It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.

·

Bring a “health history” list with you (and keep it up to date).

·

Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.

·

Tell your doctor about any natural or alternative medicines you are taking.

·

Bring other medical information, such as x-ray films, test results, and medical records.

·

Ask questions. If you don’t, your doctor will assume that you understood everything that was said.

·

Write down your questions before your visit. List the most important ones first to make sure that they are addressed.

·

Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.

·

Ask your doctor to draw pictures if you think that this would help you understand.

·

Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.

This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.

15

Seeking Guidance 77

·

Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.

·

Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.

·

After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.

By following these steps, you will enhance the relationship you will have with your physician.

Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:16 ·

Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html

·

Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html

·

Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html

Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.

16

78 Chronic Fatigue Syndrome

progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Rhinitis: Inflammation of the mucous membrane of the nose. [EU]

Clinical Trials 79

CHAPTER 3. CLINICAL TRIALS AND CHRONIC FATIGUE SYNDROME Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning chronic fatigue syndrome.

What Is a Clinical Trial?17 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for chronic fatigue syndrome is to try it on patients in a clinical trial.

The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.

17

80 Chronic Fatigue Syndrome

What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·

Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.

·

Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on chronic fatigue syndrome.

·

Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for chronic fatigue syndrome compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted?

Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on chronic fatigue syndrome carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on chronic fatigue syndrome. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham

Clinical Trials 81

treatment.” This treatment, like a placebo, has no effect on chronic fatigue syndrome and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how chronic fatigue syndrome develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for chronic fatigue syndrome. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo

82 Chronic Fatigue Syndrome

surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.

Recent Trials on Chronic Fatigue Syndrome The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to chronic fatigue syndrome.18 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·

Compare the medical conditions of Gulf War Veterans to non-deployed veterans. Condition(s): Chronic Fatigue Syndrome; Fibromyalgia; Post-Traumatic Stress Disorder; neurologic abnormalities; general health status Study Status: This study is completed. Sponsor(s): Department of Veterans Affairs; Department of Veterans Affairs Cooperative Studies Program Purpose - Excerpt: Primary Hypothesis: Gulf War veterans will have an equal prevalence or mean level of the following medical and psychological conditions frequently reported in the literature compared to a control group of nondeployed veterans: (1) chronic fatigue syndrome, (2) fibromyalgia, (3) post-traumatic stress disorder, (4) neurologic abnormalities, including peripheral neuropathy and cognitive dysfunction, and (5) general health status. Study Type: Observational

18

These are listed at www.ClinicalTrials.gov.

Clinical Trials 83

Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00032461;jsessionid=961904E 2F152B4903484A7F360A57329 ·

Exercise and Behavioral Therapy Trial (EBT). Condition(s): Persian Gulf Syndrome Study Status: This study is completed. Sponsor(s): Department of Veterans Affairs; Department of Veterans Affairs Cooperative Studies Program; Department of Defense Purpose - Excerpt: This trial is a study of Gulf War era veterans who have unexplained chronic medical symptoms such as pain, fatigue, and/or cognitive difficulties. The treatments to be studied, cognitive behavior therapy (CBT) and aerobic exercise, have been shown to be effective in alleviating symptoms in individuals with other similar types of illnesses, such as chronic fatigue syndrome and fibromyalgia. This is a Phase 3, 2X2 factorial designed study. All study participants are assigned to one of four treatment groups - CBT and aerobic exercise, aerobic exercise alone, CBT alone or usual and customary care. This study durations is 28 months; 1092 participants were enrolled and will be followed in clinic at 3, 6 and 12 months after enrollment. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00007748;jsessionid=961904E 2F152B4903484A7F360A57329

84 Chronic Fatigue Syndrome

Benefits and Risks19 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·

A new treatment could be more effective than the current treatment for chronic fatigue syndrome. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over.

·

If the treatment is effective, then it may improve health or prevent diseases or disorders.

·

Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.

·

People who take part in trials contribute to scientific discoveries that may help other people with chronic fatigue syndrome. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent

Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient.

What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 19

Clinical Trials 85

How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·

Information on all known risks and benefits of the treatments in the study.

·

Know how the researchers plan to carry out the study, for how long, and where.

·

Know what is expected of you.

·

Know any costs involved for you or your insurance provider.

·

Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.

·

Talk openly with doctors and ask any questions.

After you join a clinical trial, you have the right to: ·

Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.

·

Receive any new information about the new treatment.

·

Continue to ask questions and get answers.

·

Maintain your privacy. Your name will not appear in any reports based on the study.

86 Chronic Fatigue Syndrome

·

Know whether you participated in the treatment group or the control group (once the study has been completed).

What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·

What is the purpose of the clinical trial?

·

What are the standard treatments for chronic fatigue syndrome? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?

·

What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?

·

How long will the treatment last? How often will I have to come back for follow-up exams?

·

What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?

·

Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?

·

How will my health be monitored?

·

Where will I need to go for the clinical trial? How will I get there?

·

How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?

·

Will I be able to see my own doctor? Who will be in charge of my care?

Clinical Trials 87

·

Will taking part in the study affect my daily life? Do I have time to participate?

·

How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?

Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “chronic fatigue syndrome” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·

For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/

·

For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html

·

For trials on infectious, immune, and allergic diseases, visit the site of the National Institute of Allergy and Infectious Diseases: http://www.niaid.nih.gov/clintrials/

88 Chronic Fatigue Syndrome

General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna

·

A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna

·

The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna

·

The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna

·

Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna

·

Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna

·

Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna

Clinical Trials 89

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU]

91

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

ABOUT PART II In Part II, we introduce you to additional resources and advanced research on chronic fatigue syndrome. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on chronic fatigue syndrome. In Part II, as in Part I, our objective is not to interpret the latest advances on chronic fatigue syndrome or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with chronic fatigue syndrome is suggested.

Studies 93

CHAPTER 4. STUDIES ON CHRONIC FATIGUE SYNDROME Overview Every year, academic studies are published on chronic fatigue syndrome or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on chronic fatigue syndrome. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on chronic fatigue syndrome and teach you how to keep current on new studies as they are published or undertaken by the scientific community.

The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and chronic fatigue syndrome, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer,

94 Chronic Fatigue Syndrome

and the format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “chronic fatigue syndrome” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·

Follicular Phase Hypothalamic-Pituitary-Gonadal Axis Function in Women With Fibromyalgia and Chronic Fatigue Syndrome Source: Journal of Rheumatology. 27(6): 1526-1530. June 2000. Summary: This journal article provides health professionals with information on a study that tested the hypothesis that women with fibromyalgia (FM) and chronic fatigue syndrome (CFS) manifest abnormalities of the hypothalamic-pituitary-gonadal (HPG) hormonal axis. The study population consisted of 9 premenopausal women with FM, with or without comorbid CFS, and 8 with CFS only. Healthy matched controls were also recruited. The secretory characteristics of estradiol, progesterone, follicle stimulating hormone (FSH), and luteinizing hormone (LH) in the women with FM and CFS were compared to the healthy controls. Blood was collected from an indwelling intravenous catheter every 10 minutes over a 12 hour period. LH was assayed from every sample. Pulses of LH were identified by a pulse detection program. FSH and progesterone were assayed from a pool of hourly samples for the 12 hour period, and estradiol was assayed from samples pooled over four 3 hour time periods. The study found that there were no significant differences in FSH, progesterone, or estradiol levels in patients versus controls. Similarly, no significant differences were found between the patients and the controls for any of the measures of LH. The article concludes that there is no indication of abnormal gonadotropin secretion or gonadal steroid levels in this small, but systematic, study of HPG axis function in patients with FM and CFS. 1 figure, 2 tables, and 23 references. (AA-M).

·

Chronic Fatigue Syndrome: Update on Diagnosis and Treatment Source: Consultant. 40(8): 1441-1443,1447-1450. July 2000. Summary: This journal article provides health professionals with information on the epidemiology, etiology, diagnosis, and treatment of chronic fatigue syndrome (CFS). The main characteristic of CFS is disabling fatigue that can impair normal daily functioning or

Studies 95

occupational performance. Although no single cause for CFS has been widely accepted, CFS has been associated with infections and neuromuscular, immunologic, neurologic, and psychiatric complaints. The evaluation of a patient with suspected CFS includes a detailed history and thorough physical and mental status examination. Although there are no specific diagnostic tests for CFS, certain laboratory tests are recommended to exclude other possible causes of illness. Numerous medical conditions associated with fatigue must be considered in the differential diagnosis, including fibromyalgia, endocrine abnormalities, chronic viral infections, malignancy, sleep disorders, connective tissue diseases, body weight fluctuation, and side effects of medications. Management focuses on restoration of occupational or social functioning and prevention of further disability. Various pharmacologic agents have been used to treat CFS, including antiviral agents, immunomodulators, psychotropic agents, pain medications, antiallergy medications, acetylcholinesterase inhibitors, and alternative medications. However, data on the safety and effectiveness of many of these pharmacologic agents are incomplete and conflicting. Antidepressants and anxiolytics are effective in treating comorbid psychiatric conditions associated with CFS. Useful nonpharmacologic therapies include exercise, cognitive behavior therapy, and participation in self help groups. 4 tables and 43 references. (AA-M). ·

Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain Syndrome Source: Current Opinion in Orthopedics. 11(3): 215-224. June 2000. Summary: This journal article provides health professionals with information on the prevalence, symptoms, etiology, diagnosis, and treatment of fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. The prevalence of fibromyalgia varies, depending on the population under investigation. Fibromyalgia and widespread pain were common in Gulf War veterans with unexplained illness referred to a rheumatology clinic. Increased tenderness was demonstrated in the postmenstrual phase of the cycle compared with the intermenstrual phase in normally cycling women but not in users of oral contraceptives. Patients with fibromyalgia had high levels of symptoms that have been used to define syndromes associated with silicone implants. Tender points were noted to be a common transient finding associated with acute infectious mononucleosis, but fibromyalgia was an unusual long-term outcome. The common association of fibromyalgia with other rheumatic and systemic illnesses has been further explored. A preliminary study shows a possible linkage of fibromyalgia to the human leukocyte antigen

96 Chronic Fatigue Syndrome

(HLA) region. Patients with fibromyalgia were found to have an impaired ability to activate the hypothalamic pituitary portion of the hypothalamic pituitary adrenal axis as well as the sympathoadrenal system, leading to reduced corticotropin and epinephrine response to hypoglycemia. Much interest has been expressed in the literature on the possible role of autonomic dysfunction in the development or exacerbation of fatigue and other symptoms in chronic fatigue syndrome. Mycoplasma genus and Mycoplasma fermentans were detected by polymerase chain reaction in patients with chronic fatigue syndrome. Evidence indicates that myofascial temporomandibular disorder does not run in families. Published randomized controlled trials provide good evidence for the effectiveness of cognitive behavioral therapy and behavior therapy for chronic pain in adults. Data indicate a favorable outcome for fibromyalgia and chronic fatigue syndrome in children and adolescents. 84 references. (AA-M). ·

Chronic Fatigue Syndrome: Do You Know What It Means? Source: American Journal of Nursing. AJN. 99(3): 70-72,74-75. March 1999. Summary: This journal article provides health professionals with information on chronic fatigue syndrome (CFS). Fatigue, which is the primary symptom, gave the condition its name. Although the cause of CFS is unknown, some theories include infectious agents, an immunologic dysfunction, hormonal dysfunction, and physical or emotional stress. Despite speculation about the role of infectious agents such as Epstein-Barr virus and Candida albicans in CFS, the Centers for Disease Control and Prevention maintains that CFS cannot be caused by any single recognized infectious agent because no firm association between CFS and infection caused by any known human pathogen has been established. Although many immunologic disturbances have been observed in patients who have CFS, these disturbances are not unique to those experiencing CFS symptoms. In addition, the characteristics, epidemiology, and prognosis of CFS are distinct from those of major immune deficiency disorders. Some theories suggest that the immune system produces elevated levels of inflammatory mediators and cytokines which trigger the flu-like symptoms of CFS; however, these theories have been dismissed. Some researchers have considered the lack of cortisol secretion as a source of CFS, but this theory has also been rejected. In addition, evidence does not support psychiatric illness as a cause of CFS. The article offers guidelines for diagnosing CFS; treating the condition using pharmacologic, psychiatric, stress reduction, and diet therapies; and providing support to the patient. 4 references.

Studies 97

·

Fibromyalgia and Chronic Fatigue Syndrome: Similarities and Differences Source: Rheumatic Disease Clinics of North America. 22(2):219-243; May 1996. Summary: This journal article for health professionals examines the similarities and differences between fibromyalgia (FM) and chronic fatigue syndrome (CFS). CFS and FM are clinical conditions characterized by a variety of nonspecific symptoms, including prominent fatigue, myalgia, and sleep disturbances. There are no diagnostic studies or widely accepted, pathogenic explanatory models for either illness. Despite remarkably different diagnostic criteria, CFS and FM have many demographic and clinical similarities. Similarities and differences in the epidemiologic, clinical, laboratory, and psychiatric features of FM ad CFS are discussed, as are the prognosis and treatment of these conditions. This discussion reveals that few differences exist in the domains of symptoms, examination findings, laboratory tests, functional status, psychosocial features, and psychiatric disorders. FM appears to represent an additional burden of suffering among those with CFS. Further clarification of the similarities and differences between CFS and FM may be useful in studies of the prognosis and help define subsets of patients who may benefit from specific therapeutic interventions. 178 references and 5 tables. (AA-M).

·

Evidence That Abnormalities of Central Neurohormonal Systems Are Key to Understanding Fibromyalgia and Chronic Fatigue Syndrome Source: Rheumatic Disease Clinics of North America. 22(2):267-284; May 1996. Summary: This journal article for health professionals discusses the specific neurohormonal abnormalities found in fibromyalgia (FM) and chronic fatigue syndrome (CFS). FM and CFS can be categorized as stress-associated syndromes by virtue of frequent onset after acute or chronic stressors and apparent exacerbation of symptoms during periods of physical or emotional stress. These illnesses also share perturbation of the hypothalamic-pituitary-adrenal (HPA) axis and sympathetic stress response systems. Potential mechanisms by which dysfunction of neurohormonal stress-response systems could contribute to vulnerability to stress-associated syndromes and to the symptoms of FM and CFS are examined, focusing on findings from studies of the HPA axis, sympathetic nervous system, other neurohormonal systems, and serotonin. A neurohormonal hypothesis of the pathogenesis of FM and CFS is presented. 86 references, 2 figures, and 1 table. (AA-M).

98 Chronic Fatigue Syndrome

·

Fibromyalgia and Chronic Fatigue Syndrome: Are They the Same? Source: Journal of Musculoskeletal Medicine. 7(5): 19-28. May 1990. Summary: This detailed clinical review examines the similarities and differences of fibromyalgia (FM) and chronic fatigue syndrome (CFS). The latter is a uniform, internally consistent syndrome characterized by chronic, diffuse pain and a high tender point count, while the former also may be a discrete syndrome (prominent symptoms being myalgias and exhaustion). These two syndromes share many symptoms, especially nonrefreshing sleep, and 75 percent of CFS patients meet diagnostic criteria for FM. Studies have indicated no significance to an antecedent flulike illness or antibodies to the Epstein-Barr virus. Depression is more likely a result than a cause of the pain and fatigue of FM and CFS. Patients require compassionate long-term care. Amitriptyline and cyclobenzaprine in low doses may be helpful; analgesics and aerobic exercise may relieve symptoms. 19 references.

·

Fibromyalgia and Chronic Fatigue Syndrome; Whither Goest Thou: Alone or Together? (editorial) Source: Journal of Musculoskeletal Medicine. 7(5): 2-3, 16. May 1990. Summary: This editorial discusses the similarities between fibromyalgia (FM) and chronic fatigue syndrome (CFS), noting that, since myalgias and profound fatigue occur in both, there is a natural tendency to consider their associations and possible interrelationships. The findings of clinical studies of Goldenberg indicated that most CFS patients have FM. Nonetheless, there are many ways that these findings can be interpreted. A number of abnormal pathophysiologic findings have been reported in FM; findings of recent notable studies are described. The overall assessment of this editorial is that it would appear prudent to continue clinically to separate FM and CFS, especially until the definition of and controversy surrounding CFS becomes more lucid, and so that possible differences in etiology, pathogenesis, and treatment may emerge. 6 references.

Federally-Funded Research on Chronic Fatigue Syndrome The U.S. Government supports a variety of research studies relating to chronic fatigue syndrome and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of

Studies 99

Health.20 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to chronic fatigue syndrome and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore chronic fatigue syndrome and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for chronic fatigue syndrome: ·

Project Title: Activity Intervention for Chronic Fatigue Syndrome Principal Investigator & Institution: Jason, Leonard A.; Professor; Psychology; De Paul University 1 E Jackson Blvd Chicago, Il 60604 Timing: Fiscal Year 2000; Project Start 0-SEP-2000; Project End 1-AUG2005 Summary: The primary purpose of this study is to evaluate the efficacy of the nurse delivered behavioral interventions of graded activity with cognitive therapy and graded activity alone in comparison to a cognitive therapy alone control condition in a target sample of 120 persons with CFS. This study will: 1) test the hypothesis that graded activity with cognitive therapy will yield significant improvements in physical and role functioning in comparison to the cognitive therapy alone control condition; and 2) test the hypothesis that graded activity alone will yield significant improvements in physical and role functioning in comparison to the cognitive therapy alone control condition. In addition, this study will test, as a secondary Aim, that graded activity alone will be as effective as graded activity with cognitive therapy in improving physical and role functioning in CFS. Since medical utilization rates for CFS patients are high and medical therapies for CFS have been largely unsuccessful, the study of a potentially effective behavioral intervention

20 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).

100 Chronic Fatigue Syndrome

for the illness may offer an opportunity for a substantially improved quality of life in these debilitated patients. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Chronic Fatigue Syndromecooperative Research Centers Principal Investigator & Institution: Buchwald, Dedra S.; Professor; Medicine; University of Washington Seattle, Wa 98195 Timing: Fiscal Year 2000; Project Start 0-SEP-1995; Project End 1-JUL-2003 Summary: The University of Washington (UW) Chronic Fatigue Syndrome Cooperative Research Center (CFS CRC) continues an integrated, multi- faceted research program that capitalizes on several large, well-organized data bases already collected and addresses a number of practical and theoretical issue sin the epidemiology, clinical assessment, etiology and pathophysiology of CFS. The 4 Projects reflect our central theme: the examination of genetic and environmental influences on the biological and psychosocial characteristics of CFS. Our research has sought to operationalize an explanatory model of CFS that emphasizes 5 dynamic elements and their interaction with respect to risk, onset and course. These elements referred to as the "5 Ps" include predisposing, precipitating, predictive, perpetuating and perceptual factors. CFS may occur in a vulnerable individual in whom genetic, environmental or other predisposing factors are present. Subsequently, an acute or chronic stressor precipitates illness. During a transition period, predictors of chronically become apparent. Symptoms lead to disability, which is both due to, and results in, psychological distress, social dysfunction and other factors that perpetuate illness. Lastly, the individual's perceptual style serves as a context in which the other 4 factors affect the illness. With this model in mind, the objectives of the next period of support for this CFS CRC are to: 1) further characterize CFS using monozygotic twins discordant for CFS and to expose subjects to biological and behavior "stressors" in a theoretically guided fashion to investigate predisposition and perceptions in CFS; 2) confirm the clinical and laboratory abnormalities seen in our current intensive study of CFSdiscordant monozygotic twins in sleep, neuropsychological function, immunological parameters and exercise capacity by re-examining these twins and adding a new comparison group of health twin pairs; 3) to define the relative contributions of predispositional genetic or common environmental effects using biometrical genetic analyses of populationbased twin study; 4) compare the children of CFS cases and the children of healthy controls to determine the impact of parental illness and to examine if predispositional and perceptual styles are vertically transmitted across generation; 5) explore the role of perpetuators and

Studies 101

perceptions in the context of an observational study of interactions between CFS patients and their partners; and 6) to follow-up a wellcharacterized patient sample to further describe the natural history, prognosis and predictors of outcome of CFS. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Circulatory Dysfunction in Chronic Fatigue Syndrome Principal Investigator & Institution: Stewart, Julian M.; Associate Professor; Pediatrics; New York Medical College Elmwood Hall Valhalla, Ny 10595 Timing: Fiscal Year 2001; Project Start 4-AUG-2001; Project End 1-JUL2005 Summary: Chronic fatigue syndrome (CFS) is associated with orthostatic intolerance which often takes the form of postural orthostatic tachycardia syndrome (POTS) in adolescents. Preliminary data suggest the novel concept that defective vasoconstriction produces POTS in CFS with cardiac autonomic changes as a secondary response. CFS patients will be compared to healthy controls and to controls with simple faints to test 3 hypotheses: 1) Blood is redistributed peripherally and redistribution is enhanced during orthostasis producing increased microvascular filtration and dependent edema. Central hypovolemia causes decreased cardiac output, reflex tachycardia and reduced cerebral blood flow. This is enhanced during orthostasis producing increased microvascular filtration, dependent edema, and peripheral pooling. These changes alter the interstitium, and cause reflex tachycardia, reduced cerebral blood flow and often hypotension. Blood volume and cardiac output using the indocyanine green dye dilution technique will be measured supine, during conventional 700 head-up tilt, and during low angle head-up tilt. Cerebral blood flow velocity (CBFv) will be estimated by transcranial Doppler ultrasonography. Thoracic, splanchnic, and pelvic vascular volumes will be measured by impedance plethysmography, and limb blood flow, arterial flow, venous volume-pressure relation, and venous pressure will be measured by venous occlusion strain gauge plethysmography. These will show increased blood flow to lower extremities when upright. Central hypovolemia will occur and will reduce CBF and produce symptoms of CFS. Cardiac autonomic status including baroreflex will be assessed by heart rate and blood pressure variability and transfer function. Baroreflex and heart rate variability will be decreased and blood pressure variability will be increased related to circulatory deficit 2) The defect in vasoconstriction is heterogeneous comprising abnormal arterial baroreflex mediated sympathetic vasoconstriction in one subgroup of CFS patients and abnormal local

102 Chronic Fatigue Syndrome

vasoconstriction in a second subgroup with defective veno-arteriolar reflex (arterial baroreflex insensitive dysfunction). Low angle tilt will be used to activate baroreflex mediated and local reflexes. Local reflexes including myogenic, metabolic and veno-arteriolar will be sorted out through use of supine testing designed to specifically stimulate a specific reflex (limb hang, large pressure step and reactive hyperemia) and measuring peripheral resistance. 3) Cardiac autonomic findings are secondary to circulatory changes. Thus, tachycardia relates to vagal withdrawal because of circulatory insufficiency. CFS patients will be treated with midodrine or placebo in a cross-over study. Using supine and low angle tilt experiments, circulatory measurements and psychological instruments will be combined to demonstrate that circulatory abnormalities, autonomic abnormalities and symptoms correct in a subgroup of CFS patients with low resting peripheral resistance. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Mitochondria Pathophysiology

in

Chronic

Fatigue

Syndrome

Principal Investigator & Institution: Chazotte, Brad J.; University of North Carolina Chapel Hill Box 2688, 910 Raleigh Rd Chapel Hill, Nc 27515 Timing: Fiscal Year 2000 Summary: This abstract is not available. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Psychiatric Comorbidity in Chronic Fatigue Syndrome Principal Investigator & Institution: Friedberg, Fred; Psychiatry and Behavioral Scis; State University New York Stony Brook Stony Brook, Ny 11794 Timing: Fiscal Year 2001; Project Start 5-AUG-2001; Project End 1-JUL2006 Summary: The purpose of this application is twofold: 1) To provide a systematic plan for career development of the Candidate as a clinical researcher; and 2) to present a preliminary study application based on a sound research plan. The career development plan involves: a) taking graduate courses in advanced statistics and research methods, behavioral assessment, and ethical issues; and b) supervision by two mentors of the conduct of research by the Candidate. The Specific Aims of the preliminary study are to: 1) compare in vivo and traditional retrospective outcome measures in patients with chronic fatigue syndrome (CFS) in

Studies 103

order to assess the ecological validity of traditional measures in both naturalistic outcome (NO) and clinical outcome (CO) studies; 2) test the hypothesis, via secondary data analysis in the CO study, that a clinically meaningful classification of CFS patients into high and low functioning subgroups can be made on the dimension of physical functioning and validated with its relationship to role functioning, CFS symptom severity, and psychiatric symptomatology; and 3) test the hypothesis, via secondary data analysis in the CO study, that graded activity with cognitive therapy is more effective for low function participants and that cognitive-behavioral coping skills treatment is more effective for the high function subgroup. The NO and CO studies involve cohorts of 100 and 120 patients, respectively. Data collection will include 21 (NO study) or seven (CO study) consecutive daily in vivo assessments of physical activity (actigraphy), energy, fatigue, and affect. In vivo assessments will take place at baseline and at a 24 month follow-up in the NO study, and at baseline, treatment termination, and three, six, and 12 month follow-up intervals in the CO study. The findings of this study will have important implications for clinical management of this debilitating illness. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Trial of Fludrocortisone for Chronic Fatigue Syndrome Principal Investigator & Institution: Rowe, Peter C.; Associate Professor; Johns Hopkins University 3400 N Charles St Baltimore, Md 21218 Timing: Fiscal Year 2000; Project Start 1-OCT-1975; Project End 0-NOV2004 Summary: The trial is based on preliminary data showing that upright tilt table testing can provoke a drop in blood pressure consistent with neurally mediated hypotension (NMH) in a high proportion of those with chronic fatigue syndrome (CFS), and that unblinded treatment of the NMH leads to an improvement in CFS symptoms in 40-70% of CFS patients. The specific aim of this study is to determine whether patients aged 18 to 50 years with CFS and NMH will have a greater improvement in (1) self-reported general sense of well being and (2) objective orthostatic tolerance when treated with fludrocortisone than when treated with placebo. Eligible subjects are randomized to receive either fludrocortisone (escalating to 0.1 mg/day) or placebo for nine weeks. In week 8-9 of treatment, subjects undergo repeat tilt testing. The primary outcome measure is the proportion with a 15 point improvement in wellness on a 100 point wellness score, and a secondary outcome is the proportion with improvement in the number of minutes before the development of hypotension during upright tilt. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

104 Chronic Fatigue Syndrome

·

Project Title: Cognitive Behavioral Stress Management Intervention for CFS Principal Investigator & Institution: Antoni, Michael H.; University of Miami Box 016159 Miami, Fl 33101 Timing: Fiscal Year 2000 Summary: The proposed 5-year study examines the effects of a cognitive behavioral stress management (CBSM) intervention (including relaxation training and cognitive restructuring) on physical health status and illness burden in 150 (after attrition) patients diagnosed with Chronic Fatigue Syndrome (CFS). The study tests the efficacy of a conceptual model which holds that the interaction of psychological factors (distress and depression associated with either CFS related symptoms or other stressful life events) and immunologic dysfunction (elevations in cytokines such as tumor necrosis factor [TNF]-alpha and the macrophage activation marker, neopterin) contribute to: (a) the exacerbation of physical symptoms associated with CFS (e.g., fatigue, joint pain, fever) and subsequent increases in illness burden (operationalized as disruptions in daily activities due to fatigue and related physical symptoms); and (b) further dysfunction in the immune system (e.g., impaired lymphocyte proliferative responses to phytohemagglutinin [PHA] and natural killer cell cytotoxicity [NKCC]). The proposed revised study tests this model experimentally by first evaluating the effects of a 10 week group CBSM intervention upon the primary health outcome variables: physical health status (CFS symptoms), fatigue severity, CFSrelated illness burden and functional quality of life. Secondly, this study examines the role of two sets of hypothesized mediator variables: (l) reductions in psychological distress and depression levels; and (2) immune system modulation (less impaired NKCC and PHA responsivity, lowered TNF-alpha peptides and TNF-type II receptors in serum, reduced neopterin levels, reduced numbers of lymphocyte subsets expressing activation markers). To bring about these effects the intervention is hypothesized to directly modulate a set of psychosocial intervention targets that we hypothesize will influence the mediator variables. These intervention targets include reductions in distorted cognitive appraisals, greater use of active and engaging coping strategies, increased coping self-efficacy and increased perceptions of social support provisions. This is a randomized experiment with a 12-week CBSM (plus education and standard care) condition vs. an Education plus standard care (ED/SC) control condition, At the end of the 12-week CBSM intervention, the experimental group will continue on a standard of care regimen and will be monitored for their adherence to the techniques learned in the CBSM intervention and for intercurrent medical treatment.

Studies 105

At the end of the 12-week ED/SC period the control group will be subsequently monitored as they continue on their standard of care. We will follow subjects at 6 and 12 months post-CBSM to assess treatment carryover and to correlate prospectively pre-post CBSM changes in mediator and health outcome variables measured at these follow-up points. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Dietary Patterns, Health Status and Autonomic Function among Chronic Fatigue Principal Investigator & Institution: Giri, Satyendra; University of Connecticut Sch of Med/Dnt of Medicine and Dentistry Farmington, Ct 06032 Timing: Fiscal Year 2000 Summary: This study seeks to test two etiologic hypotheses for chronic fatigue syndrome (CFS), a relatively common diagnosis of exclusion whose etiology is controversial. The primary hypothesis is that CFS occurs in some individuals whose dietary intake of sodium and potassium is inadequate. The secondary hypothesis is that autonomic dysfunction may interact with sodium depletion to produce CFS symptoms in some patients. The first stage of the study is a large dietary survey involving over 400 CFS patients and 200 age- and sex-matched controls who are interviewed three times by telephone. Dietary information is entered into the computers using the Minnesota Nutrition Data System. This study extensively utilizes the CDMAS facilities for all data input and telephone dietary surveys. Approximately 440 phone calls (each 30 minutes in length) have been completed. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

·

Project Title: Effect of Stress and Cbsm On Natural Killer Cell Activity in CFS Principal Investigator & Institution: Fletcher, Mary A.; Professor of Medicine; University of Miami Box 016159 Miami, Fl 33101 Timing: Fiscal Year 2000 Summary: Natural cell mediated immunity is frequently decreased in individuals who meet the case definition of chronic fatigue syndrome (CFS). Our research group and others have noted that exposures of healthy individuals as well as immunocompromised persons to acute and chronic stressors have an adverse effect on natural killer (NK) cell function, and that this adverse stress effect is susceptible to amelioration by behavioral interventions in which cognitive restructuring and

106 Chronic Fatigue Syndrome

relaxation training are taught. In this Multidisciplinary Research Center, Project 2 will carry out such an intervention for individuals who meet the diagnosis criteria for CFS. The intervention will be carried out over a 12 week period. Blood samples from both pre-intervention and postintervention will be available for study in Project 4. Also available will be 2 samples collected 12 weeks apart on CFS subjects who do not receive the intervention, but are in an education/control condition. The Administrative Core will enroll healthy, sedentary controls for both Project l and Project 4 and for the Laboratory Core as normal subjects for all assays being done. The proposed Center will provide a mechanism to advance our understanding of NK cells and CFS. A detailed comparison will be made of markers of NK cell cytotoxic capacity as well as actual killing of tumor cell target cells. The differences between effect of the intervention on NK cell function can be evaluated. In addition to the traditional chromium release cytotoxicity assay, Project 4 will look at important markers of NK cell functional status not yet evaluated in CFS. These will include flow cytometric determination of intracellular perforin and determination of degree of expression on NK cells of the surface membrane adhesion molecules, L-selectin (CD62L), LFA-1 (CDlla) and CD56 by fluorescence intensity measurements. These substances are associated with the ability of NK cells to-kill target cells and/or to interact with vascular epithelial cells and pass from peripheral circulation into tissue. The relationship of these markers to the low NK cell activity associated with CFS, to effects of acute and chronic stress on NK cell function or to the modulation of life stress by behavioral interventions has not previously been studied. We will examine the effects on NK cell cytotoxicity, intracellular perforin levels and surface markers of in vitro exposure of peripheral blood cells to stress hormones (epinephrine, norepinephrine, cortisol) and tumor necrosis factor-o:. All of these studies will be done pre/post intervention in the 2 CFS groups of subjects and one time in the healthy, sedentary controls. This design will allow the determination of differences between CFS and healthy controls as well as the impact of the behavioral intervention by comparing findings before and following the intervention relative to CFS control subjects. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: HPA Axis Dysregulation in Fibromyalgia Principal Investigator & Institution: Crofford, Leslie J.; University of Michigan at Ann Arbor Ann Arbor, Mi 48109 Timing: Fiscal Year 2000 Summary: Fibromyalgia (FM) and chronic fatigue syndrome (CFS) are two conditions of unknown cause that share many symptoms in

Studies 107

common, including painful muscles and joints, fatigue, poor sleep, difficulty thinking and worsening of symptoms during periods of physical or emotional stress. Patients with FM or CFS often have associated symptoms of chronic headaches, temporomandibular disorders, irritable bowel or bladder, and pelvic pain. In addition, patients often describe themselves as anxious or depressed. Our group has proposed that FM, CFS, and other related disorders, could be termed 'stress-associated' syndromes. The response to stress involves secretion of a series of hormones in the hypothalamus of the brain, pituitary gland, and adrenal gland (the HPA axis). These hormones are thought to provide important mind-body links for symptoms including pain and fatigue. This study is designed to understand how the stress hormones ACTH and cortisol are secreted in patients with FM or CFS. We hypothesize that we will find differences in the activity of the HPA axis hormones in FM and CFS patients in the resting state and when the stress response is activated. We will study patients that are free of significant medical illness and substances that can affect stress hormones such as medications for pain, sleep, depression or anxiety and nicotine. Patients will be paired with healthy control subjects of similar age, gender, hormonal status, and body weight. Patients and control subjects will undergo one or more tests of stress response hormones. The first study involves frequent (every 10 min) measurements of ACTH and cortisol in the blood under basal (resting) conditions over 24 hours. After the initial studies, patients undergoing this type of testing will take a medication (metyrapone) that affects the way hormone secretion is controlled to determine whether there is altered activity of the central components of the stress axis which reside in the hypothalamus of the brain. Other studies involve administration of hormones, corticotrophin releasing hormone (CRH) or arginine vasopressin (AVP), to determine the effects on the release of ACTH and cortisol in the blood. Taken together, these tests will provide inferential information about the hypothalamic component of the HPA axis. As a result of these studies, informed development of reasonable approaches to diagnosis and treatment will become more likely. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: MRI Of Diaphragm Role in Screening Candidates for Lung Volume Reduction Surgery Principal Investigator & Institution: Bergey, Philip D.; University of Pennsylvania 3451 Walnut Philadelphia, Pa 19104 Timing: Fiscal Year 2000

108 Chronic Fatigue Syndrome

Summary: The purpose of this study is to 1) compare glycolytic muscle metabolism in patients with chronic fatigue syndrome (CFS) with normal humans, 2) test the feasibility of using near-infrared spectroscopy (NIRS) measurements to evaluate patients with chronic fatigue syndrome, and 3) to determine if exercise training improves muscle metabolism in CFS patients. To address these aims we tested 27 subjects controls and patients with CFS as identified by Dr. Natelson's research group. The medial gastrocnemius was studied and repeated plantar flexions were performed using a isokinetic device. CFS subjects had oxidative capacity (Vmax determined from PCr recovery) compared to control subjects, consistent with our previous studies. Seven of the 21 CFS patients had abnormal rates of H+ production during the 64 s maximal test. Three had slower H+ rates and four had faster H+ rates. NIRS measurements of the rate of oxygen resaturation showed close agreement with PCr recovery rates in control subjects (32.5 + 11 for NIRS compared to 29.9 + 4.8 s for PCr). However, NIRS recovery after exercise was slower the CFS patients than PCr recovery (48.2 + 21 for NIRS compared to 35.4 + 14 s for PCr). In addition, NIRS recovery of oxygen saturation was slower after cuff ischemia in CFS patients compared to controls (20.8 + 13 for CFS compared to 11.3 + 2.8 s for controls). Four CFS subjects have completed the training and testing protocol. Future studies will continue to test CFS patients and control subjects to complete our aims. We plan to continue testing of CFS patients and normal subjects who are enrolling in the exercise program. We also plan to follow up the NIRS findings of reduced oxygen delivery by measuring muscle blood flow in CFS patients with alternative means (Duplex Doppler flow measurements). In one CFS patient with slow NIRS recovery, Doppler measures showed normal peak blood flows, but reduced sensitivity to submaximal hyperemic stimuli. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Orthostatic Intolerance in CFS Principal Investigator & Institution: Freeman, Roy; Associate Professor of Neurology; Beth Israel Deaconess Medical Center 330 Brookline Ave Boston, Ma 02215 Timing: Fiscal Year 2000; Project Start 1-FEB-1998; Project End 1-JAN2002 Summary: (Adapted from the Investigator's Application): The over-all objectives of this proposal are: (1) to delineate the pathophysiology and pathogenesis of orthostatic intolerance in the chronic fatigue syndrome (CFS) (2) to investigate the role of orthostatic intolerance in producing the symptoms of CFS and (3) to use this information to apply physiologically

Studies 109

appropriate therapeutic interventions and thereby decrease the symptoms of fatigue. The investigators plan to determine the physiological characteristics of orthostatic intolerance in CFS patients and healthy controls, characterize the differences in functional exercise capacity among CFS patients and between CFS patients and controls; and identify the relationships between the physiological measures of orthostatic intolerance, measures of functional exercise capacity, symptoms of orthostatic intolerance and symptoms of fatigue. Cardiovascular autonomic functions are to be assessed using standard tests of the sympathetic and parasympathetic nervous system; arterial baroreflex gain is to be measured using the heart rate and muscle sympathetic nerve activity response to pharmacological provocations; the cardiopulmonary baroreflex functions is to be assessed in response to graded central hypovolemia elicited by lower body negative pressure; plasma volume will be measured using the Evans Blue dye method; venous compliance assessed with venous occlusion plethysmography, Assessment of neurohumoral status and the functional exercise capacity is also to be included. These measures, which comprise the elements of orthostatic tolerance, will be compared with matched healthy controls. The relationships between these variables and the role of covariates such as the level of physical activity and psychiatric state, determined with standardized instruments, are to be analyzed using multivariate statistics. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Pain Perception and Health Care Seeking Behavior in Fibromyalgia Principal Investigator & Institution: Bradley, Laurence A.; University of Alabama at Birmingham Uab Station Birmingham, Al 35294 Timing: Fiscal Year 2001 Summary: The initial purpose of this project was to examine abnormal pain perception and health care seeking behavior among persons with fibromyalgia (FM). Our initial subject groups consisted of 66 rheumatology clinic patients with FM, 39 community residents with FM who had not obtained medical care for their painful FM symmptoms in the past 10 years (i.e., nonpatients), and 39 healthy controls recruited from the community. We found that both patients and nonpatients with FM show significantly lower pain threshold levels and produce significantly higher scores on an index of sensory discrimination than healthy controls. These findings were replicated at 1- and 2-year followup assessments. These findings indicated that abnormal pain perception is associated with FM independently of health care seeking behavior. Moreover, it was found that lifetime history of psychiatric

110 Chronic Fatigue Syndrome

disorders was the best psycho-social predictor of obtaining health care at a tertiary care, rheumatology clinic for FM symptoms, i.e., greater psychiatric morbidity was associated with health care seeking. This indicated that the high levels of psychiatric morbidity seen in tertiary care clinic patients with FM is more strongly related to health care seeking than to the disorder itself. This project has been renewed by the NIH for another four years. The purpose of the second cycle of the project is to examine functional brain activity in three groups of subjects during resting conditions and during exposure to an acute painful stimuluus. These groups are 30 patients with fibromyalgia, 30 patients with chronic fatigue syndrome, and 30 healthy controls. Functional brain activity is assessed by single photon emission computed tomographic imaging. Four subject protocols have been completed at present. It is anticipated that patients with fibromyalgia will show inhibited funtional brain activity, relative to patients with chronic fatigue syndrome and controls, in the thalamus and caudate nucleus during resting conditions and during painful stimulation. However, it also is expected that the fibromyalgia patients, compared to the other subject groups, will show higher levels of functional brain activity in the anterior cingulate cortex during painful stimulation. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·

Project Title: Regulation of Adrenal Function in Fibromyalgia Principal Investigator & Institution: Adler, Gail K.; Brigham and Women's Hospital 75 Francis St Boston, Ma 02115 Timing: Fiscal Year 2000 Summary: The purpose of this study is to characterize the regulation of adrenal steroid hormone production in individuals with fibromyalgia and Chronic Fatigue Syndrome versus healthy individuals. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket

E-Journals: PubMed Central21 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).22 Access Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 22 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 21

Studies 111

to this growing archive of e-journals is free and unrestricted.23 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “chronic fatigue syndrome” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for chronic fatigue syndrome in the PubMed Central database: ·

No Evidence of Active Infection with Human Herpesvirus 6 (HHV-6) or HHV-8 in Chronic Fatigue Syndrome by Malin Enbom, Annika Linde, and Birgitta Evengard; 2000 June http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=86845&ren dertype=external

·

Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome by Pauline Powell, Richard P Bentall, Fred J Nye, and Richard H T Edwards; 2001 February 17 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=26565

·

Retroviral Sequences Related to Human T-Lymphotropic Virus Type II in Patients with Chronic Fatigue Immune Dysfunction Syndrome by E DeFreitas, B Hilliard, PR Cheney, DS Bell, E Kiggundu, D Sankey, Z Wroblewska, M Palladino, J P.Woodward, and H Koprowski; 1991 April 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=51352

The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.24 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 24 PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication. 23

112 Chronic Fatigue Syndrome

some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with chronic fatigue syndrome, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “chronic fatigue syndrome” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “chronic fatigue syndrome” (hyperlinks lead to article summaries): ·

Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study. Author(s): Deale A, Husain K, Chalder T, Wessely S. Source: The American Journal of Psychiatry. 2001 December; 158(12): 2038-42. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11729022&dopt=Abstract

·

Motor cortex excitability in chronic fatigue syndrome. Author(s): Starr A, Scalise A, Gordon R, Michalewski HJ, Caramia MD. Source: Clinical Neurophysiology: Official Journal of the International Federation of Clinical Neurophysiology. 2000 November; 111(11): 202531. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11068238&dopt=Abstract

·

Neuroimmune and neuropsychiatric aspects of chronic fatigue syndrome. Author(s): Krupp LB, Pollina D. Source: Advances in Neuroimmunology. 1996; 6(2): 155-67. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8876771&dopt=Abstract

·

Nutritional strategies for treating chronic fatigue syndrome. Author(s): Logan AC. Source: Alternative Medicine Review : a Journal of Clinical Therapeutic. 2001 February; 6(1): 4-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11207453&dopt=Abstract

·

Outcome in the chronic fatigue syndrome. Author(s): Wessely S.

Studies 113

Source: Bmj (Clinical Research Ed.). 1992 August 8; 305(6849): 365. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1392901&dopt=Abstract ·

P300 assessment of chronic fatigue syndrome. Author(s): Polich J, Moore AP, Wiederhold MD. Source: Journal of Clinical Neurophysiology : Official Publication of the American Electroencephalographic Society. 1995 March; 12(2): 186-91. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7797633&dopt=Abstract

·

Prevalence of chronic fatigue syndrome-related symptoms among nurses. Author(s): Jason LA, Taylor SL, Johnson S, Goldston SE, Salina D, Bishop P, Wagner L. Source: Evaluation & the Health Professions. 1993 December; 16(4): 38599. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10130552&dopt=Abstract

·

Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. Author(s): Fulcher KY, White PD. Source: Bmj (Clinical Research Ed.). 1997 June 7; 314(7095): 1647-52. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9180065&dopt=Abstract

·

Society, mind and body in chronic fatigue syndrome: an anthropological view. Author(s): Ware NC. Source: Ciba Found Symp. 1993; 173: 62-73; Discussion 73-82. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8491108&dopt=Abstract

·

Stress-associated immune modulation: relevance to viral infections and chronic fatigue syndrome. Author(s): Glaser R, Kiecolt-Glaser JK.

114 Chronic Fatigue Syndrome

Source: The American Journal of Medicine. 1998 September 28; 105(3A): 35S-42S. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9790480&dopt=Abstract ·

The effects of nutritional supplements on the symptoms of fibromyalgia and chronic fatigue syndrome. Author(s): Dykman KD, Tone C, Ford C, Dykman RA. Source: Integrative Physiological and Behavioral Science : the Official Journal of the Pavlovian Society. 1998 January-March; 33(1): 61-71. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9594356&dopt=Abstract

·

The effects on siblings in families with a child with chronic fatigue syndrome. Author(s): Jackson EL. Source: Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community. 1999 Summer; 3(2): 27-32. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10451339&dopt=Abstract

·

The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Author(s): Joyce J, Hotopf M, Wessely S. Source: Qjm : Monthly Journal of the Association of Physicians. 1997 March; 90(3): 223-33. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9093600&dopt=Abstract

·

The relationship between neurally mediated hypotension and the chronic fatigue syndrome. Author(s): Bou-Holaigah I, Rowe PC, Kan J, Calkins H. Source: Jama : the Journal of the American Medical Association. 1995 September 27; 274(12): 961-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7674527&dopt=Abstract

·

The search for legitimacy and the "expertization" of the lay person: the case of chronic fatigue syndrome. Author(s): Clarke JN.

Studies 115

Source: Soc Work Health Care. 2000; 30(3): 73-93. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10880009&dopt=Abstract ·

Treatment of chronic fatigue syndrome by dietary supplementation with omega-3 fatty acids - a good idea? Author(s): Tamizi far B, Tamizi B. Source: Medical Hypotheses. 2002 March; 58(3): 249-50. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12018979&dopt=Abstract

·

Use of alternative treatments by chronic fatigue syndrome discordant twins. Author(s): Afari N, Eisenberg DM, Herrell R, Goldberg J, Kleyman E, Ashton S, Buchwald D. Source: Integr. Med. 2000 March 21; 2(2): 97-103. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10882883&dopt=Abstract

Vocabulary Builder Acetylcholinesterase: An enzyme that catalyzes the hydrolysis of acetylcholine to choline and acetate. In the CNS, this enzyme plays a role in the function of peripheral neuromuscular junctions. EC 3.1.1.7. [NIH] ACTH: Adrenocorticotropic hormone. [EU] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Antecedent: Existing or occurring before in time or order often with consequential effects. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH]

116 Chronic Fatigue Syndrome

Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU]

Comorbidity: The presence of co-existing or additional diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study. Comorbidity may affect the ability of affected individuals to function and also their survival; it may be used as a prognostic indicator for length of hospital stay, cost factors, and outcome or survival. [NIH] Defecation: The normal process of elimination of fecal material from the rectum. [NIH] Detoxification: Treatment designed to free an addict from his drug habit. [EU]

Diaphragm: The musculofibrous partition that separates the thoracic cavity from the abdominal cavity. Contraction of the diaphragm increases the volume of the thoracic cavity aiding inspiration. [NIH] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Epinephrine: The active sympathomimetic hormone from the adrenal medulla in most species. It stimulates both the alpha- and beta- adrenergic systems, causes systemic vasoconstriction and gastrointestinal relaxation, stimulates the heart, and dilates bronchi and cerebral vessels. It is used in asthma and cardiac failure and to delay absorption of local anesthetics. [NIH] Estradiol: The most potent mammalian estrogenic hormone. It is produced in the ovary, placenta, testis, and possibly the adrenal cortex. [NIH] Ficoll: A sucrose polymer of high molecular weight. [NIH] Filtration: The passage of a liquid through a filter, accomplished by gravity, pressure, or vacuum (suction). [EU] Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU] Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] FSH: A gonadotropic hormone found in the pituitary tissues of mammals. It regulates the metabolic activity of ovarian granulosa cells and testicular Sertoli cells, induces maturation of Graafian follicles in the ovary, and promotes the development of the germinal cells in the testis. [NIH]

Studies 117

Hypothalamus: Ventral part of the diencephalon extending from the region of the optic chiasm to the caudal border of the mammillary bodies and forming the inferior and lateral walls of the third ventricle. [NIH] Immunotherapy: Manipulation of the host's immune system in treatment of disease. It includes both active and passive immunization as well as immunosuppressive therapy to prevent graft rejection. [NIH] Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] LH: A small glycoprotein hormone secreted by the anterior pituitary. LH plays an important role in controlling ovulation and in controlling secretion of hormones by the ovaries and testes. [NIH] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Mentors: Senior professionals who provide guidance, direction and support to those persons desirous of improvement in academic positions, administrative positions or other career development situations. [NIH] Midodrine: An ethanolamine derivative that is an adrenergic alpha agonist. It is used as a vasoconstrictor agent in the treatment of hypotension. [NIH] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used

118 Chronic Fatigue Syndrome

pharmacologically as a sympathomimetic. [NIH] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Orthostatic: Pertaining to or caused by standing erect. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perspiration: Sweating; the functional secretion of sweat. [EU] Plethysmography: Recording of change in the size of a part as modified by the circulation in it. [NIH] Postural: Pertaining to posture or position. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its

Studies 119

principal forms in tissues and cells are as FMN and FAD. [NIH] Sedentary: 1. sitting habitually; of inactive habits. 2. pertaining to a sitting posture. [EU] Sympathetic: 1. pertaining to, caused by, or exhibiting sympathy. 2. a sympathetic nerve or the sympathetic nervous system. [EU] Symptomatology: 1. that branch of medicine with treats of symptoms; the systematic discussion of symptoms. 2. the combined symptoms of a disease. [EU]

Tachycardia: Excessive rapidity in the action of the heart; the term is usually applied to a heart rate above 100 per minute and may be qualified as atrial, junctional (nodal), or ventricular, and as paroxysmal. [EU] Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Ultrasonography: The visualization of deep structures of the body by recording the reflections of echoes of pulses of ultrasonic waves directed into the tissues. Use of ultrasound for imaging or diagnostic purposes employs frequencies ranging from 1.6 to 10 megahertz. [NIH] Vagal: Pertaining to the vagus nerve. [EU] Vasoconstriction: The diminution of the calibre of vessels, especially constriction of arterioles leading to decreased blood flow to a part. [EU]

Patents 121

CHAPTER 5. PATENTS ON CHRONIC FATIGUE SYNDROME Overview You can learn about innovations relating to chronic fatigue syndrome by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.25 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with chronic fatigue syndrome within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with chronic fatigue syndrome. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.

25Adapted

from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.

122 Chronic Fatigue Syndrome

Patents on Chronic Fatigue Syndrome By performing a patent search focusing on chronic fatigue syndrome, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on chronic fatigue syndrome: ·

Chronic fatigue syndrome diagnosis Inventor(s): Suhadolnik; Robert J. (Roslyn, PA) Assignee(s): Temple University of the Commonwealth System of Higher Education (Philadelphia, PA) Patent Number: 6,214,554 Date filed: April 21, 1999 Abstract: Chronic fatigue syndrome is diagnosed through detection of an about 30 kDa RNase L molecule under native conditions in cellular extracts of RNase L-containing cells such as peripheral blood mononuclear cells. Proteins are fractionated according to molecular weight under nondenaturing conditions. The fractionated proteins are assayed for the presence of the about 30 kDa protein having 2-5Adependent RNase L enzyme activity. The severity of the affliction may be determined by testing for the presence of RNase L molecules having approximate molecular weights of 30 and 80 kDa. The presence of the about 30 kDa RNase L, and the absence of the about 80 kDa RNase L molecule, correlates with severe chronic fatigue syndrome. The presence of both RNase L molecules indicates a less severe chronic fatigue syndrome affliction. Under denaturing conditions, and in the presence of protease inhibitors, chronic fatigue syndrome may be diagnosed through the detection of an about 37 kDa 2-5A binding protein. Excerpt(s): This invention relates to the diagnosis of chronic fatigue syndrome (CFS) through detection of a unique molecular marker associated with the disease. ... Chronic fatigue syndrome (CFS) is an illness of unknown etiology, often associated with sudden onset, flu-like symptoms, debilitating fatigue, low-grade fever, myalgia and

Patents 123

neurocognitive dysfunction. CFS patients typically display reduced Karnofsky performance scores (KPS). The Karnofsky performance test measures an individual's ability to function and carry on normal activities. Karnofsky scores range form zero for a nonfunctional or dead patient to 100 for a completely normal function. Diagnosis of CFS remains one of exclusion. ... A method for diagnosing chronic fatigue syndrome comprises assaying a patient sample for the presence of an about 30 kDa RNase L. Web site: http://www.delphion.com/details?pn=US06214554__ ·

Use of androgen therapy in fibromyalgia and chronic fatigue syndrome Inventor(s): White; Hillary D. (South Pomfret, VT) Assignee(s): Trustees of Dartmouth College (Hanover, NH) Patent Number: 5,935,949 Date filed: March 10, 1999 Abstract: A method of using androgen therapy to alleviate symptoms associated with chronic fatigue syndrome and fibromyalgia syndrome is provided. Excerpt(s): Androgens are known to allow for increased body musculature and improved libido and energy levels. For example, while there are currently no studies proving that anabolic steroids increase lean body mass among HIV infected patients, clinical experience suggests that these agents enable many patients to gain muscle mass. Anabolic steroids seem to work best for patients who are able to do weight training. The most commonly used regimens for this therapy are testosterone enanthate or testosterone cypionate (100-200 mg intramuscularly every 24 weeks). However, testosterone patches for transdermal delivery can also be used. Exogenous testosterone therapy has also been suggested to produce functional improvement when combined with exercise in patients suffering from X-linked bulbospinal muscular atrophy (Goldenberg, J. N. and Bradley, W. G., J. Neurol. Sci., 1996, 135(2) 158-61). In addition, dehydroepiandrosterone-annexed vitamin C infusion treatment of a male patient suffering from chronic fatigue syndrome was suggested to effectuate the clinical control of pulmonary infection associated with chronic fatigue syndrome by fortifying the endogenous activities of both cortisol and testosterone (Kodama et al., In Vivo, 1996, 10(6) 575-84). ... It has now been found that androgen therapy is useful in alleviating the symptoms associated with chronic fatigue syndrome and fibromyalgia syndrome. ... An object of the present invention is to provide a method of alleviating symptoms of chronic fatigue syndrome

124 Chronic Fatigue Syndrome

and fibromyalgia in women which comprises administering to women suffering from chronic fatigue syndrome or fibromyalgia an effective amount of an androgen or combination of androgens. Web site: http://www.delphion.com/details?pn=US05935949__ ·

Composition for administration to patients with chronic fatigue syndrome and acquired immune deficiency syndrome Inventor(s): Ingram; Teresa J. (4315 Spinks Creek La., Spring, TX 77388) Assignee(s): none reported Patent Number: 5,919,460 Date filed: January 28, 1998 Abstract: The present invention is directed to a composition that can be used in alleviating symptoms associated with chronic fatigue syndrome or acquired immune deficiency syndrome. The composition is derived from the herbs Chimaphila umbellate, Apocynum andro-saemifolium, Symphytum officianale, and Equisetum hyemale. In addition, the invention is directed to a method of treating patients using this composition. Excerpt(s): This invention relates to methods of treatment of the symptoms of Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and Acquired Immune Deficiency Syndrome (AIDS), and compositions useful in the performance of such methods. In addition, the invention relates to therapies and compositions for the treatment of symptoms associated with Mycoplasma fermentans infections. ... In 1990 researchers estimated that there were somewhere between three and five million cases of CFS in the United States (Cowley, G. Hager, M., Nadine, J., Chronic Fatigue Syndrome, A Debilitating Disease Afflicts Millions-And the Cause is Still a Mystery, Newsweek, Nov. 12, 1990). An accurate assessment is complicated by the lack of a reliable test for CFS and the fact that many CFS patients are misdiagnosed as having cancer, multiple sclerosis, depression, or Lyme disease. ... In order to examine the effectiveness of the composition in treating symptoms associated with AIDS and chronic fatigue syndrome ("CFS"), a survey was conducted of patients suffering from severe, and, in most cases, long-term symptoms. Patients were asked to sign a consent form in which they agreed to take two to four doses of the composition daily. After a period of several months, the patients were requested to prepare a report in which they noted any changes with respect to their symptoms. At the beginning of the survey,

Patents 125

participants were also required to complete a survey form listing their symptoms and the time at which they first became ill. Web site: http://www.delphion.com/details?pn=US05919460__ ·

Method for detecting antipolymer antibodies and diagnosing silicone related disease (SRD) fibromyalgia and chronic fatigue syndrome (CFS) Inventor(s): Garry; Robert F. (New Orleans, LA), Tenenbaum; Scott A. (New Orleans, LA), Plymale; Douglas R. (New Orleans, LA) Assignee(s): The Administrators of the Tulane Educational Fund (New Orleans, LA) Patent Number: 5,834,215 Date filed: October 20, 1995 Abstract: The present invention provides for a method of detecting antipolymer antibodies, and a method for detecting silicone related disease, fibromyalgia, and chronic fatigue syndrome. Excerpt(s): This invention relates to a method and a kit for detecting antipolymer antibodies, and more particularly, to a method for diagnosing silicone related disease (SRD) fibromyalsia, and chronic fatigue syndrome (CFS). ... Various immunoassay techniques typically used in characterizing autoimmune responses, which are known to be extremely sensitive and specific, were used to identify antipolymer antibodies in over 50% of tested individuals diagnosed with silicone related disease and over 80% of tested individuals diagnosed with fibromyalgia and chronic fatigue syndrome. The detection of antipolymer antibodies provide the first definitive evidence that silicone breast implants are capable of producing an immunological response that is diagnostically testable, and the first evidence that an immunological response to fibromyalgia and chronic fatigue can be tested by an objective method. ... The diagnosis of fibromyalgia and chronic fatigue syndrome are currently based on subjective clinical observations comparing the symptomology of a patient with the symptomology formulated by the American College of Rheumatology for fibromyalgia, and Centers for Disease Control and Prevention for Chronic Fatigue Syndrome. Currently no known objective laboratory test exist to identify fibromyalgia or chronic fatigue patients. Web site: http://www.delphion.com/details?pn=US05834215__

126 Chronic Fatigue Syndrome

·

Detection of chronic fatigue syndrome Inventor(s): Mordechai; Eli (Los Angeles, CA), Vojdani; Aristo (Los Angeles, CA) Assignee(s): Immunosciences Lab, Inc. (Beverly Hills, CA) Patent Number: 5,830,668 Date filed: December 13, 1996 Abstract: A method for diagnosing chronic fatigue syndrome in an individual. Peripheral blood monocytes are isolated and p68 kinase activity, mRNA levels, protein levels, apoptosis and cell cycle analysis are measured. Significantly increased levels of any of these compared to healthy control individuals indicates the presence of chronic fatigue syndrome. Excerpt(s): The present invention relates to the diagnosis of chronic fatigue syndrome (CFS) by detecting elevated levels of double stranded RNA-activated protein kinase (p68 kinase or PKR) which leads to increased apoptotic cell populations and cell arrest in the late S and G.sub.2 /M boundaries of the cell cycle. The PKR gene product is involved in the interferon-mediated antiviral, antiproliferative pathway. ... Chronic Fatigue Syndrome (CFS) is a systemic disorder defined by the Centers for Disease Control (CDC) as self-reported persistent or relapsing fatigue lasting six or more months (Fukuda et al., Ann. Intern. Med., 121:953-959, 1994). Patients with CFS tend to have individualistic symptoms triggered by stress or unknown factors including low grade fever, sore throat, headache, painful lymph nodes, muscle weakness, irritability, inability to concentrate, depression, irregular heartbeat and neuropsychological problems. Although the precise nature and cause of CFS is unknown, there is some clinical and serological association with all of the human herpes viruses, particularly Epstein-Barr virus (EBV) and Human B-lymphotropic virus (HBLV). CFS may involve physiological manifestations of neurological influences on immune function by neurohormones or other immunomodulators of Tlymphocyte function. Upon binding to various lymphocyte surface antigens, viruses induce secretion of lymphokines which may interfere with immune response regulation including mucosal, humoral and cellular immunity. Web site: http://www.delphion.com/details?pn=US05830668__

Patents 127

·

Ribonuclease L inhibitor as an indicator of chronic fatigue syndrome Inventor(s): Vojdani; Aristo (Los Angeles, CA), Mordechai; Pli (Los Angeles, CA) Assignee(s): Immunosciences Lab, Inc. (Beverly Hills, CA) Patent Number: 5,766,859 Date filed: January 15, 1997 Abstract: Chronic fatigue syndrome in an individual is diagnosed by determining the level of RNase L inhibitor mRNA or protein in peripheral blood mononuclear cells. Significantly decreased levels of RLI mRNA or protein compared to healthy control individuals indicates the presence of chronic fatigue syndrome. Excerpt(s): The present invention relates to the diagnosis of chronic fatigue syndrome (CFS) by detecting elevated levels of mRNA. More specifically, the invention relates to the diagnosis of CFS by detection of RNase L inhibitor (RLI) mRNA. The RLI gene product is a component of the interferon-mediated antiviral pathway. ... Chronic Fatigue Syndrome (CFS) is a systemic disorder defined by the Centers for Disease Control (CDC) as self-reported persistent or relapsing fatigue lasting six or more months (Fukuda et al., Ann. Intern. Med., 121:953-959, 1994). Patients with CFS tend to have individualistic symptoms triggered by stress or unknown factors including low grade fever, sore throat, headache, painful lymph nodes, muscle weakness, irritability, inability to concentrate, depression, irregular heartbeat and neuropsychological problems. Although the precise nature and cause of CFS is unknown, there is some clinical and serological association with all of the human herpes viruses, particularly Epstein-Barr virus (EBV) and Human Blymphotropic virus (HBLV). CFS may involve physiological manifestations of neurological influences on immune function by neurohormones or other immunomodulators of T-lymphocyte function. Upon binding to various lymphocyte surface antigens, viruses induce secretion of lymphokines which may interfere with immune response regulation including mucosal, humoral and cellular immunity. Web site: http://www.delphion.com/details?pn=US05766859__

128 Chronic Fatigue Syndrome

·

NADH and NADPH pharmaceuticals for treating chronic fatigue syndrome Inventor(s): Birkmayer; Joerg G. D. (Vienna, AU) Assignee(s): Birkmayer Pharmaceuticals (New York, NY) Patent Number: 5,712,259 Date filed: April 22, 1996 Abstract: A method for treating Chronic Fatigue Syndrome or alleviating symptoms thereof wherein the reduced form of nicotinamide adenine dinucleotide (NADH) or the reduced form of nicotinamide adenine dinucleotide phosphate (NADPH) or physiologically compatible salts or derivatives of NADH and/or NADPH are administered to a person suffering from the syndrome or its symptoms. Patients so treated exhibit greatly improved physical strength and performance over time, and their symptoms including fatigue, muscle pain and weakness, and headaches are greatly alleviated. Excerpt(s): The invention relates to a pharmaceutical and a method for treating Chronic Fatigue Syndrome and alleviating the symptoms thereof. More particularly, the invention relates to the use of reduced forms of nicotinamide-adenine-dinucleotide (NADH) or nicotinamideadenine-dinucleotide phosphate (NADPH), or physiologically acceptable salts or derivatives thereof, in the treatment of Chronic Fatigue Syndrome. ... Chronic Fatigue Syndrome (CFS) is an illness characterized by debilitating fatigue and a number of associated symptoms. In September of 1989, the U.S. Center for Disease Control initiated a physician-based Chronic Fatigue Syndrome Surveillance System in four cities to determine the prevalence, incidence, cause and impact of the illness. To date no definitive information has been harvested which applies to CFS as an easily diagnosable malady. ... At the present time, there is no known substance which alleviates the severe and debilitating fatigue continously experienced by persons suffering from CFS. Thus, a need exists for a medicine which is effective in treating Chronic Fatigue Syndrome, or at least abating the symptoms thereof. Web site: http://www.delphion.com/details?pn=US05712259__

Patents 129

·

Composition and method for the treatment of chronic fatigue syndrome Inventor(s): Bissbort; Siegbert H. (387 24th Avenue, Villieria, Pretoria, Transvaal Province, ZA), Davis; Henry J. (Plot 120, Swavelpoort, Pretoria, Transvaal Province, ZA) Assignee(s): none reported Patent Number: 5,545,670 Date filed: June 8, 1994 Abstract: This invention relates to a composition and method for the treatment of myalgic encephalomyelitis known as chronic fatigue syndrome. The composition consists essentially of specific amounts of Lmethionine, magnesium salts, folic acid, vitamin B.sub.6, and vitamin B.sub.12. Excerpt(s): The ailment thought by some to be caused by the Epsteinbarr virus, known as Chronic Fatigue Syndrome or Yuppie-flu, reveals a syndrome of chronic fatigue. Medically it is poorly defined, and involves chronic and recurrent fatigue and various combinations of other symptoms such as sore throat, lymphnode tenderness, headache and myalgia. ... The Applicants have found that patients suffering from chronic fatigue syndrome and treated with the substance or composition according to the invention, showed a noticeable recovery within 20 days. Tests disclosed that in those cases where the CD4:CD8 ratio was impaired, the normal ratio of CD4:CD8 T-lymphocytes was restored. ... Chronic fatigue syndrome (myalgic encephalomyelitis, low natural killer cell disease, chronic fatigue with immune disorder syndrome) may be associated with a variety of immunological disorders. Web site: http://www.delphion.com/details?pn=US05545670__

·

Method for treatment of chronic fatigue syndrome Inventor(s): Uchida; Atsushi (Uji, JP) Assignee(s): Kaken Pharmaceutical Co. (Tokyo, JP) Patent Number: 5,424,300 Date filed: October 13, 1993 Abstract: An agent for treatment of chronic fatigue syndrome, which comprises a polysaccharide having a .beta.-1,3-glucoside bond in the main chain as an effective ingredient.

130 Chronic Fatigue Syndrome

Excerpt(s): The present invention relates to an agent for treating chronic fatigue syndrome, which comprises a polysaccharide having a .beta.-1,3glucoside bond in the main chain as an effective ingredient. ... A case of the chronic fatigue syndrome must fulfill major criteria 1 and 2, and the following minor criteria: 6 or more of the 11 symptom criteria and 2 or more of the 3 physical criteria; or 8 or more of the 11 symptom criteria. ... Specific laboratory tests or clinical measurements are not required to satisfy the definition of the chronic fatigue syndrome, but the recommended evaluation includes serial weight measurements; serial morning and afternoon temperature measurement; complete blood count and differential; serum electrolytes; glucose; creatinine, blood urea nitrogen; calcium, phosphorus, total bilirubin, alkaline phosphatase, serum aspartate aminotransferase, serum alanine aminotransferase; creatine phosphokinase or aldolase; urinalysis; posteroanteior and lateral chest roentgenograms; detailed personal and family psychiatric history; erythrocyte sedimentation rate; antinuclear antibody; thyroid stimulating hormone level; HIV antibody measurement; and intermediate-strength purified protein derivative (PPD) skin test with controls. Web site: http://www.delphion.com/details?pn=US05424300__ ·

Method of diagnosing and treating chronic fatigue syndrome Inventor(s): Preston; Myra S. (1816 Truman Rd., Charlotte, NC 28205) Assignee(s): none reported Patent Number: 5,267,570 Date filed: December 30, 1992 Abstract: The present invention provides a neurodiagnostic method for chronic fatigue syndrome. Brain waves of a patient are evaluated for slow wave activity. Phase reversal in the delta wave band may be a diagnostic marker. The present invention also provides a biofeedback-based, treatment method for chronic fatigue syndrome. The patient is trained to decrease slow wave wave activity. Excerpt(s): This invention relates to chronic fatigue syndrome. ... Chronic fatigue syndrome has been accepted as a disease only recently and is still subject to considerable uncertainty as to how it may be described. It occurs principally in young adults in the age group of about 22 through 35, but can appear in childhood and through middle age. It is primarily characterized by persistent or relapsing, debilitating fatigue or easy fatigability that may come on suddenly with flu-like symptoms, and that does not resolve with bed rest. Flu-like symptoms may include pharyngitis, anterior or posterior cervical or axillary adenopathy, low-

Patents 131

grade fever, myalgia, migratory arthralgia without joint swelling or redness, headache, and difficulty concentrating. Symptoms may also include dysautonomia, mood disturbance, personality change, endocrine system change, unexplained generalized muscle weakness, impairment of sleep, and vision changes. Definitive diagnosis is evasive. ... It is thought that the disease initially involves the immune system and thereafter affects the central nervous system. Evidence of virological and bacterial involvement has been reported. There is dispute as to whether it is a psychosomatic illness or organic illness. Most investigations have involved attempted isolation of a causative virus or bacteria from a body fluid or tissue. Brain structure, brain blood flow and brain metabolism of chronic fatigue syndrome patients have been evaluated using PET, SPECT and BEAM scanning procedures, but the results have been unhelpful. Web site: http://www.delphion.com/details?pn=US05267570__ ·

Diagnosing and treating chronic fatigue electrocardiographic monitoring of T-waves

syndrome

by

Inventor(s): Lerner; Albert M. (660 Woodland, Birmingham, MI 48009) Assignee(s): none reported Patent Number: 5,213,106 Date filed: March 25, 1991 Abstract: A method for diagnosing chronic fatigue syndrome is performed by electrocardiographically monitoring an ambulatory patient who has unexplainable fatigue and determining the frequency when the T-wave of the ambulatory patient is not positive. This monitoring is preferably performed by a portable monitor and the data is magnetically stored so as to permit subsequent analysis. A treatment is also prescribed, preferably restricting activity and refraining from the intake of alcohol, when there is an excessively high frequency of the T-wave not being positive. Recovery is determined by further electrocardiographic monitoring of the ambulatory patient and noting when the normally positive T-waves are present all, or at least almost all, of the time. Excerpt(s): This invention relates to a method for diagnosing chronic fatigue syndrome by electrocardiographic monitoring and also relates to treatment of a patient who is diagnosed as having chronic fatigue syndrome. ... The medical community now recognizes a condition of unknown cause that is referred to as chronic fatigue syndrome. The role of cardiac dysfunction in this syndrome, the diagnosis and preferred treatment have not been heretofore understood or explainable. A

132 Chronic Fatigue Syndrome

competent diagnosis for fatigue will conventionally include a complete medical history, a physical examination and appropriate laboratory studies in order to determine whether the fatigue can be explained by other diagnoses such as arteriosclerosis or other coronary artery disease, heart muscle damage from coronary thrombosis or other acute heart disease, or other heart damage such as myocarditis or pericarditis, etc. Other recognizable infections or other diverse maladies may, of course, cause chronic fatigue; but, as mentioned above, this syndrome has not been heretofore understood or diagnosable. Also, while some consider chronic fatigue syndrome to exist only when it persists for six months or longer, others consider this syndrome to be present when there is an unexplainable fatigue for much shorter periods of time such as one or two months. ... An object of the present invention is to provide a method for diagnosing chronic fatigue syndrome by electrocardiographically monitoring an ambulatory patient who has unexplainable fatigue and determining the frequency when the T-wave of the ambulatory patient is not positive, i.e. horizontal or inverted so as to be negative. More specifically, it has been discovered that horizontal or negative T-waves of even a relatively small frequency of the total for any given time period can be an indication of chronic fatigue syndrome which is believed to result from previously unrecognizable subacute myocarditis occurring during &he course of one or several systemic infections following an earlier viral infection. Web site: http://www.delphion.com/details?pn=US05213106__ ·

Method of treating chronic fatigue syndrome using an opiate receptor antagonist Inventor(s): Bihari; Bernard (29 W. 15th St., New York, NY 10011), Drury; Finvola (25 Colby St., Rochester, NY 14610) Assignee(s): none reported Patent Number: 5,013,739 Date filed: November 8, 1989 Abstract: Chronic herpes viral infections, including chronic genital herpes caused by the herpes simplex virus, Type 2, and chronic infections due to the Epstein-Barr virus, chronic fatigue syndrome, chronic inflammatory connective tissue disease, including rheumatoid arthritis and systemic lupus erythematous and related diseases, and multiple sclerosis are treated by the administration via a pharmacologically effective route of an essentially pure opiate receptor antagonist, preferably an essentially pure opiate receptor antagonist exhibiting a substantially higher blocking

Patents 133

effectiveness against Mu opiate receptor sites than against Delta receptor sites, exemplified by naltrexone and naloxone, at a low dose concentration, corresponding to about 1-10 mg per day for naltrexone, at which concentration Delta blocking activity is small, while Mu blocking activity is significant. Excerpt(s): Caligiuri et.al., Phenotypic and Functional Deficiency of Natural Killer Cells in Patients with Chronic Fatigue Syndrome, Journal of Immunology, Vol, 138, No. 10, 3306-3313. ... A 31 year old woman had suffered from chronic fatigue syndrome for one year with marked fatigue each day beginning in the early or mid afternoon. There has been some accompanying muscle aching, but no symptoms of central neuro system involvement. Her functioning at work and at home have been seriously impaired. EBV titres were quite high. She was started on naltrexone, 3.0 mg per day at bedtime and experienced complete relief of her symptoms after only thirteen days, and this improvement has been sustained thereafter. Web site: http://www.delphion.com/details?pn=US05013739__

Patent Applications on Chronic Fatigue Syndrome As of December 2000, U.S. patent applications are open to public viewing.26 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years). The following patent applications have been filed since December 2000 relating to chronic fatigue syndrome: ·

Method for diagnosing and alleviating the symptoms of chronic fatigue syndrome Inventor(s): Lerner, A. Martin ; (Birmingham, MI) Correspondence: Sangeeta G. Shah; Brooks & Kushman P.C.; 22nd Floor; 1000 Town Center; Southfield; MI; 48075-1351; US Patent Application Number: 20020037501 Date filed: October 3, 2001 Abstract: A method for alleviating chronic fatigue syndrome with the administration of antiviral agents. Based on clinical tests, chronic fatigue syndrome is a persistent herpes virus infection including incomplete virus multiplication and thus administration of antiviral agents are shown to alleviate the symptoms associated with the disorder. Based on therapeutic trials, patients receiving the recommended antiviral

26

This has been a common practice outside the United States prior to December 2000.

134 Chronic Fatigue Syndrome

treatment, have experienced significant reduction or elimination of the symptoms associated with chronic fatigue syndrome. A method of diagnosis of the chronic fatigue syndrome is further disclosed. Excerpt(s): This invention relates to a method of alleviating the symptoms associated with chronic fatigue syndrome through the use of antiviral agents. ... Chronic fatigue syndrome (CFS) is a disorder which, until recently, had no formalized name, received little attention and was believed by the majority of the medical community to be a psychological rather than medical disorder. However, as information about the disorder has been disseminated, the symptoms associated with the disorder, as well as the growing number of people afflicted with this disorder, have steadily increased to alarming proportions. In fact, CFS is being reported with increasing frequency throughout the world. ... Chronic fatigue syndrome is a puzzling, exasperating illness whereby previously healthy, vigorous and productive young or middle-aged adults are suddenly afflicted with a persistent, overwhelming fatigue. When such a severe debilitating fatigue extends beyond six months and psychiatric disease is excluded, the condition has been termed "chronic fatigue syndrome." Despite the number of people afflicted with chronic fatigue syndrome and the recent research attention, to date, the cause of the disorder remains unknown. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·

Compounds for treating fibromyalgia and chronic fatigue syndrome Inventor(s): McCall, Robert B.; (Kalamazoo, MI), Marshall, Robert Clyde; (Mattawan, MI), Robertson, David W.; (Galesburg, MI), Ashley, Thomas M.; (Portage, MI) Correspondence: Austin W. Zhang; Pharmacia & Upjohn Company; Global Intellectual Property; 301 Henrietta Street; Kalamazoo; MI; 49001; US Patent Application Number: 20020004510 Date filed: April 17, 2001 Abstract: The present invention provides for methods for the treatment of fibromyalgia syndrome or chronic fatigue syndrome by the administration of heterocyclic amine-type compounds, substituted phenylazacycloalkane-type compounds, or cabergoline-type compounds, or a salt of any said compound. Excerpt(s): The present invention relates to the use of neuromuscular agents, and the pharmacologically acceptable salts thereof, for the

Patents 135

treatment of nervous system disorders, and more particularly to the use of compounds of U.S. Pat. Nos. 5,273,975, 5,436,240, 5,594,024, 5,462,947, and 4,526,892 for the treatment of symptoms of fibromyalgia syndrome and chronic fatigue syndrome. ... Chronic fatigue syndrome (CFS), also referred to as chronic fatigue immune disorders syndrome, yuppie flu; fatigue-chronic, and chronic fatigue and immune dysfunction syndrome, is a clinically defined condition characterized by profound tiredness or fatigue. In addition, patients with CFS generally report various nonspecific symptoms, including weakness, muscle aches and pains, excessive sleep, malaise, fever, sore throat, tender lymph nodes, impaired memory and/or mental concentration, insomnia, and depression. The exact cause of CFS is unknown and, to date, there are no specific tests to confirm the diagnosis of CFS, though a variety of tests are usually done to exclude other possible causes of the symptoms. ... Accordingly, there is clearly a need for better treatments for chronic fatigue syndrome and fibromyalgia. Now, the present invention reveals several compounds that can be formulated into useful therapeutic treatments for these conditions. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html

Keeping Current In order to stay informed about patents and patent applications dealing with chronic fatigue syndrome, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “chronic fatigue syndrome” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on chronic fatigue syndrome. You can also use this procedure to view pending patent applications concerning chronic fatigue syndrome. Simply go back to the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.

Vocabulary Builder Adenine: A purine base and a fundamental unit of adenine nucleotides. [NIH]

136 Chronic Fatigue Syndrome

Anabolic: Relating to, characterized by, or promoting anabolism. [EU] Androgens: A class of sex hormones associated with the development and maintenance of the secondary male sex characteristics, sperm induction, and sexual differentiation. In addition to increasing virility and libido, they also increase nitrogen and water retention and stimulate skeletal growth. [NIH] Antigens: Substances that are recognized by the immune system and induce an immune reaction. [NIH] Arthralgia: Pain in a joint. [EU] Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Creatine: An amino acid that occurs in vertebrate tissues and in urine. In muscle tissue, creatine generally occurs as phosphocreatine. Creatine is excreted as creatinine in the urine. [NIH] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Equisetum: A genus of plants closely related to ferns. Some species have medicinal use and some are poisonous. [NIH] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Immunoassay: Immunochemical assay or detection of a substance by serologic or immunologic methods. Usually the substance being studied serves as antigen both in antibody production and in measurement of antibody by the test substance. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Lymphokines: Soluble protein factors generated by activated lymphocytes that affect other cells, primarily those involved in cellular immunity. [NIH] Methionine: A sulfur containing essential amino acid that is important in many body functions. It is a chelating agent for heavy metals. [NIH] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Musculature: The muscular apparatus of the body, or of any part of it. [EU] Myocarditis: Inflammation of the myocardium; inflammation of the muscular walls of the heart. [EU]

Patents 137

Naloxone: A specific opiate antagonist that has no agonist activity. It is a competitive antagonist at mu, delta, and kappa opioid receptors. [NIH] Naltrexone: Derivative of noroxymorphone that is the N-cyclopropylmethyl congener of naloxone. It is a narcotic antagonist that is effective orally, longer lasting and more potent than naloxone, and has been proposed for the treatment of heroin addiction. The FDA has approved naltrexone for the treatment of alcohol dependence. [NIH] Opiate: A remedy containing or derived from opium; also any drug that induces sleep. [EU] Pericarditis: Inflammation of the pericardium. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Titre: The quantity of a substance required to produce a reaction with a given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Transdermal: Entering through the dermis, or skin, as in administration of a drug applied to the skin in ointment or patch form. [EU]

Books 139

CHAPTER 6. BOOKS ON CHRONIC FATIGUE SYNDROME Overview This chapter provides bibliographic book references relating to chronic fatigue syndrome. You have many options to locate books on chronic fatigue syndrome. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on chronic fatigue syndrome include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.

Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “chronic fatigue syndrome” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on chronic fatigue syndrome:

140 Chronic Fatigue Syndrome

·

America's Biggest Cover - Up: 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS Contact: TNM, Incorporated, PO Box 1475, New York, NY, 10008, (212) 627-2120. Summary: This monograph explores similarities between Chronic Fatigue Syndrome (CFS) and AIDS, concluding that they are part of the same epidemic. The author, a reporter who has investigated CFS, hypothesizes that both illnesses are probably caused by Human Herpes Virus-6 (HHV-6). She charges that AIDS researchers have made a major error in calling HIV the cause of AIDS, indicating there are now many cases of AIDS without HIV. She argues that throat lesions found in CFS patients are related to Kaposi's sarcoma, and warns that those with CFS are at high risk for cancer and tuberculosis due to loss of immunity caused by HHV-6. The book reports that Federal Government officials and researchers are covering up the fact that they made a mistake in informing the public about HIV and AIDS, and are doing nothing to prevent HHV-6 from being spread in the nation's blood supply.

·

Chronic Fatigue and Related Immune Deficiency Syndromes Contact: American Psychiatric Press, Inc., 1400 K St NW, Washington, DC, 20005, (800) 368-5777. Summary: This book presents a synthesis of the research into disorders of chronic fatigue. The contributing authors examine the relationship between chronic fatigue and immune deficiency syndromes and major biological depression. This includes a discussion of their cause, psychopathology, neuroendocrinology, neurochemistry, and treatment. The papers consider the immunological correlates, viral etiology, neuroendocrine research, and psychological and cognitive aspects of chronic fatigue syndrome. The chapters on treatment review current treatment approaches and set the scene for future developments in antivirals and antidepressants.

·

50 Things You Should Know About the Chronic Fatigue Syndrome Epidemic Contact: TNM, Incorporated, PO Box 1475, New York, NY, 10008, (212) 627-2120. Summary: The author of this book discusses Chronic Fatigue Syndrome (CFS), which he views as an AIDS-like illness that is of epidemic, and even pandemic, proportions. CFS is an illness of immune dysfunction that is contagious and has been overlooked by health authorities, says the author. He discusses symptoms that can develop in CFS, including

Books 141

blindness, skin problems, brain lesions, and loss of fingerprints. He says that CFS shares many characteristics with AIDS, such as immune dysfunction, nervous system problems, and high antibodies against cytomegalovirus (CMV), Epstein-Barr Virus, and Human Herpes Virus 6 (HHV-6). The author urges people to write their Congressional representatives to voice their concerns about this growing public health problem.

Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to chronic fatigue syndrome (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·

America's Biggest Cover-Up: 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS by Neenyah Ostrom (1993); ISBN: 0962414239; http://www.amazon.com/exec/obidos/ASIN/0962414239/icongroupin terna

·

Betrayal by the Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders by Jay A. Goldstein (1996); ISBN: 1560249811; http://www.amazon.com/exec/obidos/ASIN/1560249811/icongroupin terna

·

Breaking Out of Environmental Illness: Essential Reading for People With Chronic Fatigue Syndrome, Allergies, or Chemical Sensitivities by Robert Sampson, Patricia Hughes (Contributor) (1997); ISBN: 187918141X; http://www.amazon.com/exec/obidos/ASIN/187918141X/icongroupi nterna

·

Chronic Fatigue (1992); ISBN: 0880114681; http://www.amazon.com/exec/obidos/ASIN/0880114681/icongroupin terna

·

Chronic Fatigue and Related Immune Deficiency Syndromes (Progress in Psychiatry, No 40) by Paul J. Goodnick (Editor), Nancy G. Klimas

142 Chronic Fatigue Syndrome

(Editor) (1993); ISBN: 0880484683; http://www.amazon.com/exec/obidos/ASIN/0880484683/icongroupin terna ·

Chronic Fatigue Self-Help Book by Susan M. Lark (1995); ISBN: 0890877726; http://www.amazon.com/exec/obidos/ASIN/0890877726/icongroupin terna

·

Chronic Fatigue Syndrome (1989); ISBN: 9993584657; http://www.amazon.com/exec/obidos/ASIN/9993584657/icongroupin terna

·

Chronic Fatigue Syndrome by Jesse Stoff M.D., et al (1992); ISBN: 0060922605; http://www.amazon.com/exec/obidos/ASIN/0060922605/icongroupin terna

·

Chronic Fatigue Syndrome by Shlomo Yehuda (Editor), et al (1997); ISBN: 0306455870; http://www.amazon.com/exec/obidos/ASIN/0306455870/icongroupin terna

·

Chronic Fatigue Syndrome: A Victims Guide to Understanding, Treating and Coping With This Debilitating Illness by Gregg Charles Fisher, et al (1989); ISBN: 0446390046; http://www.amazon.com/exec/obidos/ASIN/0446390046/icongroupin terna

·

Chronic Fatigue Syndrome: Charting Your Course to Recovery by Mary E. O'Brien (1997); ISBN: 0964689197; http://www.amazon.com/exec/obidos/ASIN/0964689197/icongroupin terna

·

Chronic Fatigue Syndrome: Information for Physicians by Barry Leonard (Editor) (1997); ISBN: 0788143786; http://www.amazon.com/exec/obidos/ASIN/0788143786/icongroupin terna

·

Chronic Fatigue Syndromes (1993); ISBN: 1560244348; http://www.amazon.com/exec/obidos/ASIN/1560244348/icongroupin terna

·

Chronic Fatigue Syndromes: The Limbic Hypothesis (The Haworth Library of the Medical Neurobiology of Somatic Disorders, V. 1) by Jay A., MD Goldstein (1993); ISBN: 1560249048; http://www.amazon.com/exec/obidos/ASIN/1560249048/icongroupin terna

Books 143

·

Chronic Fatigue: Your Complete Exercise Guide (Cooper Clinic and Research Institute Fitness Series) by Neil F. Gordon, Kenneth H. Cooper (1992); ISBN: 0873223934; http://www.amazon.com/exec/obidos/ASIN/0873223934/icongroupin terna

·

Clinical Management of Chronic Fatigue Syndrome: Clinical Conference, American Association of Chronic Fatigue Syndrome by Nancy Klimas (Editor), Roberto Patarca (Editor) (1996); ISBN: 1560247924; http://www.amazon.com/exec/obidos/ASIN/1560247924/icongroupin terna

·

Coping With Chronic Fatigue Syndrome: Nine Things You Can Do by Ph.D. Fred Friedberg, Fred Friedberg (Introduction) (1995); ISBN: 1572240199; http://www.amazon.com/exec/obidos/ASIN/1572240199/icongroupin terna

·

Fatigue Disease: Chronic Fatigue Syndrome by Francey Ackerman (1994); ISBN: 0892302429; http://www.amazon.com/exec/obidos/ASIN/0892302429/icongroupin terna

·

Fibromyalgia, Chronic Fatigue Syndrome, and Repetitive Strain Injury: Current Concepts in Diagnosis, Management, Disability, and Health Economics) by Andrew Chalmers (Editor), et al (1995); ISBN: 1560247444; http://www.amazon.com/exec/obidos/ASIN/1560247444/icongroupin terna

·

Hope and Help for Chronic Fatigue Syndrome (1989); ISBN: 0138097097; http://www.amazon.com/exec/obidos/ASIN/0138097097/icongroupin terna

·

Hope and Help for Chronic Fatigue Syndrome: The Official Guide of the Cfs/Cfids Network by Karyn Feiden, David Bell (Introduction) (1992); ISBN: 0671759442; http://www.amazon.com/exec/obidos/ASIN/0671759442/icongroupin terna

·

Learning to Live With Chronic Fatigue Syndrome (1990); ISBN: 999339114X; http://www.amazon.com/exec/obidos/ASIN/999339114X/icongroupi nterna

144 Chronic Fatigue Syndrome

·

Living With Chronic Fatigue by Susan Conant (1990); ISBN: 0878337091; http://www.amazon.com/exec/obidos/ASIN/0878337091/icongroupin terna

·

Living With Chronic Fatigue Syndrome: A Personal Story of the Struggle for Recovery by Timothy Kenny, Paul R. Cheney (1994); ISBN: 1560250755; http://www.amazon.com/exec/obidos/ASIN/1560250755/icongroupin terna

·

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson (1997); ISBN: 0140263470; http://www.amazon.com/exec/obidos/ASIN/0140263470/icongroupin terna

·

Running on Empty : The Complete Guide to Chronic Fatigue Syndrome (Cfids) by Katrina H. Berne Phd (1995); ISBN: 0897931912; http://www.amazon.com/exec/obidos/ASIN/0897931912/icongroupin terna

·

Solving the Puzzle of Chronic Fatigue by Michael E. Rosenbaum, et al (1992); ISBN: 0943685117; http://www.amazon.com/exec/obidos/ASIN/0943685117/icongroupin terna

·

Systemic Candidiasis and Chronic Fatigue Syndrome (Dr. Donsbach Tells You) by Kurt W. Donsbach (1993); ISBN: 1569595577; http://www.amazon.com/exec/obidos/ASIN/1569595577/icongroupin terna

·

The Chronic Fatigue Syndrome Cookbook: Delicious, WellnessEnhancing Recipes Created Especially for Cfs Sufferers by Mary Hale, et al (1994); ISBN: 1559722207; http://www.amazon.com/exec/obidos/ASIN/1559722207/icongroupin terna

·

The Clinical and Scientific Basis of Myalgic Encephalomyelitis-Chronic Fatigue Syndrome by Byron M. Hyde (Editor), et al (1992); ISBN: 0969566204; http://www.amazon.com/exec/obidos/ASIN/0969566204/icongroupin terna

·

The Doctor's Guide to Chronic Fatigue Syndrome: Understanding, Treating, and Living With Cfids by David S. Bell (1995); ISBN: 0201407973; http://www.amazon.com/exec/obidos/ASIN/0201407973/icongroupin terna

Books 145

·

The Downhill Syndrome: If Nothing's Wrong, Why Do I Feel So Bad? by Pavel Yutsis, Morton Walker (Contributor) (1997); ISBN: 0895297582; http://www.amazon.com/exec/obidos/ASIN/0895297582/icongroupin terna

·

The Night-Side: Chronic Fatigue Syndrome and the Illness Experience by Floyd Skloot (1996); ISBN: 1885266316; http://www.amazon.com/exec/obidos/ASIN/1885266316/icongroupin terna

·

The Rebellious Body: Reclaim Your Life from Environmental Illness or Chronic Fatigue Syndrome by Janice Strubbe, Rn Wittenberg, Randy S. Baker (1996); ISBN: 0306454025; http://www.amazon.com/exec/obidos/ASIN/0306454025/icongroupin terna

·

Tired of Being Tired: Overcoming Chronic Fatigue & Low Energy by Michael A. Schmidt (1995); ISBN: 1883319161; http://www.amazon.com/exec/obidos/ASIN/1883319161/icongroupin terna

The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “chronic fatigue syndrome” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:27 ·

Acupuncture physical medicine: an acupuncture touchpoint approach to the treatment of chronic fatigue, pain, and stress disorders. Author:

In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.

27

146 Chronic Fatigue Syndrome

by Mark D. Seem; Year: 2000; Boulder, CO: Blue Poppy Press, 2000; ISBN: 1891845136 ·

CFIDS, fibromyalgia, and the virus-allergy link: new therapy for chronic functional illnesses. Author: R.B. Duncan; Year: 2001; New York: Haworth Medical Press, c2001; ISBN: 0789010720 (hard: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0789010720/icongroupin terna

·

CFS: chronic fatigue syndrome. Author: [written by Jean M. Carey]; Year: 1992; New York, NY: American Council on Science and Health, c1992

·

Chronic fatigue and its syndromes. Author: Simon Wessely, Matthew Hotopf, and Michael Sharpe; Year: 1998; Oxford; New York: Oxford University Press, 1998; ISBN: 0192621815 http://www.amazon.com/exec/obidos/ASIN/0192621815/icongroupin terna

·

Chronic fatigue syndrome (CFS. Author: ME) / Frankie Campling and Michael Sharpe; Year: 2000; Oxford; New York: Oxford University Press, 2000; ISBN: 0192630490 http://www.amazon.com/exec/obidos/ASIN/0192630490/icongroupin terna

·

Chronic fatigue syndrome: a biological approach. Author: edited by Patrick Englebienne, Kenny DeMeirleir; Year: 2002; Boca Raton: CRC Press, c2002; ISBN: 0849310466 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0849310466/icongroupin terna

·

Chronic fatigue syndrome: a treatment guide. Author: Erica F. Verrillo, Lauren M. Gellman; Year: 1998; New York: St. Martin's Griffin, 1998; ISBN: 0312180667 (pbk.) http://www.amazon.com/exec/obidos/ASIN/0312180667/icongroupin terna

·

Chronic fatigue syndrome: advances in epidemiologic, clinical, and basic science research. Author: Roberto Patarca-Montero, editor; Year: 1999; New York: Haworth Medical Press, c1999

·

Chronic fatigue syndrome: CDC and NIH research activities are diverse, but agency coordination is limited: report to the honorable Harry Reid, U.S. Senate. Author: Taylor, Renée R., 1970-; Year: 2000; Washington, D.C.: U.S. General Accounting Office, [2000]

·

Chronic fatigue syndrome: critical reviews and clinical advances. Author: Kenny De Meirleir, guest editor, Roberto Patarca-Montero, editor; Year: 2000; New York : Haworth Medical Press, c2000; ISBN: 0789009986

Books 147

http://www.amazon.com/exec/obidos/ASIN/0789009986/icongroupin terna ·

Chronic fatigue syndrome: diagnosis and treatment. Author: Carey, Jean M; Year: 1994; Plymouth Meeting, PA: ECRI, 1994

·

Chronic fatigue syndrome: information for physicians. Author: Kirmayer, Laurence J., 1952-; Year: 1997; Bethesda, MD: National Institute of Allergy and Infectious Diseases, National Institutes of Health, Public Health Service, U.S. Dept. of Health and Human Services, [1997]

·

Chronic fatigue syndrome: report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. Author: Friedberg, Fred; Year: 1996; London: Royal College of Physicians of London, 1996; ISBN: 1860160468 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1860160468/icongroupin terna

·

Chronic fatigue syndrome and the body's immune defense system. Author: Roberto Patarca-Montero; Year: 2001; New York: Haworth Medical Press, c2001; ISBN: 0789015293 (hard: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0789015293/icongroupin terna

·

Chronic fatigue syndrome. Author: Rona Moss-Morris and Keith J. Petrie; Year: 2000; London; New York: Routledge, 2000; ISBN: 0415202396 http://www.amazon.com/exec/obidos/ASIN/0415202396/icongroupin terna

·

Clinical and scientific basis of chronic fatigue syndrome: from myth towards management, proceedings of international scientific meeting, February 12 - 13, 1998, Manly Parkroyal - Sydney, Australia. Author: edited by Timothy K. Roberts; Year: 1999; [Callaghan?]: T.K. Roberts, [1999]; ISBN: 0646369059

·

Clinician's guide to controversial illnesses: chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivities. Author: Renée R. Taylor, Fred Friedberg, and Leonard A. Jason; Year: 2001; Sarasota, Fla.: Professional Resource Press, c2001; ISBN: 156887068X http://www.amazon.com/exec/obidos/ASIN/156887068X/icongroupi nterna

·

Cognitive behavioural therapy in the treatment of chronic fatigue syndrome. Author: L. Best, A. Stevens; Year: 1996; Bristol, England: U.K. National Health Service, South and West Regional Health Authority, 1996

·

Defining and managing chronic fatigue syndrome. Author: prepared for Agency for Healthcare Research and Quality, U.S. Dept. of Health and Human Services; prepared by San Antonio Evidence-based Practice

148 Chronic Fatigue Syndrome

Center at the University of Texas Health Science Center at; Year: 2001; Rockville, Md.: The Agency, [2001] ·

Disability and chronic fatigue syndrome: clinical, legal, and patient perspectives. Author: Nancy G. Klimas, Roberto Patarca, editors; Year: 1997; Binghamton, NY, USA: Haworth Medical Press, [1997]; ISBN: 0789003937 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0789003937/icongroupin terna

·

Facing and fighting fatigue: a practical approach. Author: Benjamin H. Natelson; Year: 1998; New Haven: Yale University Press, c1998; ISBN: 0300068484 (cloth: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0300068484/icongroupin terna

·

Meeting of CFS patient advocacy group representatives October 13, 1999 [electronic resource]: summary report. Author: Centers for Disease Control and Prevention; Year: 1999; [Atlanta, Ga.]: Centers for Disease Control and Prevention, 1999

·

Occupational therapy and chronic fatigue syndrome. Author: Diane L. Cox; Year: 2000; London; Philadelphia: Whurr, 2000; ISBN: 1861561555 http://www.amazon.com/exec/obidos/ASIN/1861561555/icongroupin terna

·

Pharmacotherapy of common functional syndromes: evidence-based guidelines for primary care practice. Author: Peter Manu; Year: 2000; New York: Haworth Medical Press, c2000; ISBN: 0789005883 (hard) http://www.amazon.com/exec/obidos/ASIN/0789005883/icongroupin terna

·

Research portfolio on chronic fatigue. Author: edited by Robin Fox for the Linbury Trust; Year: 1998; London: The Royal Society of Medicine Press, c1998; ISBN: 1853153672

·

Stricken: voices from the hidden epidemic of chronic fatigue syndrome. Author: Peggy Munson, editor; Year: 2000; New York: Haworth Press, c2000; ISBN: 0789008947 (hard: alk. paper) http://www.amazon.com/exec/obidos/ASIN/0789008947/icongroupin terna

·

Understanding chronic fatigue syndrome: an empirical guide to assessment and treatment. Author: Fred Friedberg, Leonard A. Jason; Year: 1998; Washington, DC: American Psychological Association, c1998; ISBN: 1557985111 (cloth) http://www.amazon.com/exec/obidos/ASIN/1557985111/icongroupin terna

Books 149

Chapters on Chronic Fatigue Syndrome Frequently, chronic fatigue syndrome will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with chronic fatigue syndrome, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and chronic fatigue syndrome using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “chronic fatigue syndrome” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on chronic fatigue syndrome: ·

Chronic Fatigue Syndrome in Singers Source: in Sataloff, R.T., ed. Professional Voice: The Science and Art of Clinical Care. 2nd ed. San Diego, CA: Singular Publishing Group, Inc. 1997. p. 447-456. Contact: Available from Singular Publishing Group, Inc. 401 West 'A' Street, Suite 325, San Diego, CA 92101-7904. (800) 521-8545 or (619) 2386777. Fax (800) 774-8398 or (619) 238-6789. E-mail: [email protected]. Website: www.singpub.com. Price: $325.00 plus shipping and handling. ISBN: 1565937287. Summary: This chapter, from a book on the clinical care of the professional voice, discusses chronic fatigue syndrome in singers. Chronic fatigue syndrome (CFS) is defined as a chronic illness of uncertain etiology characterized by at least six months of debilitating fatigue and associated symptoms. Topics include the historical perspective, manifestations of CFS, and patient care strategies. The authors conclude that although the etiology of CFS is unknown, and many still debate whether CFS is a psychiatric concomitant or organic in etiology, CFS continues to affect many people. However, the professional voice user may be more affected by this syndrome than others because of the physical, mental, and artistic demands that are required in vocal performance. When the diagnosis is established, singing skills should be maintained through short, frequent practice sessions, and with regular supervision by a laryngologist. 1 table. 23 references.

150 Chronic Fatigue Syndrome

General Home References In addition to references for chronic fatigue syndrome, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · The Invisible Enemy: A Natural History of Viruses by Dorothy H. Crawford; Hardcover - 208 pages (November 2000), Oxford University Press (Trade); ISBN: 0198503326; http://www.amazon.com/exec/obidos/ASIN/0198503326/icongroupinterna · Encyclopedia of Infectious Diseases (Encyclopedia of Infectious Diseases, 1998) by Carol Turkington, Bonnie Ashby; Library Binding - 384 pages (September 1998), Facts on File, Inc.; ISBN: 0816035121; http://www.amazon.com/exec/obidos/ASIN/0816035121/icongroupinterna · Epidemic! The World of Infectious Disease by Rob Desalle (Editor), American Museum of Natural History; Paperback - 246 pages, 1st edition (September 1999), New Press; ISBN: 1565845463; http://www.amazon.com/exec/obidos/ASIN/1565845463/icongroupinterna · Outbreak Alert: Responding to the Increasing Threat of Infectious Diseases by Jason, M.D Eberhart-Phillips; Paperback - 292 pages (July 2000), New Harbinger Pubns; ISBN: 1572242019; http://www.amazon.com/exec/obidos/ASIN/1572242019/icongroupinterna

Vocabulary Builder Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Anticholinergic: An agent that blocks the parasympathetic nerves. Called also parasympatholytic. [EU] Blindness: The inability to see or the loss or absence of perception of visual stimuli. This condition may be the result of eye diseases; optic nerve diseases; optic chiasm diseases; or brain diseases affecting the visual pathways or occipital lobe. [NIH] Candidiasis: Infection with a fungus of the genus Candida. It is usually a superficial infection of the moist cutaneous areas of the body, and is

Books 151

generally caused by C. albicans; it most commonly involves the skin (dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Cytomegalovirus: A genus of the family herpesviridae, subfamily betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Dicyclomine: A muscarinic antagonist used as an antispasmodic and in urinary incontinence. It has little effect on glandular secretion or the cardiovascular system. It does have some local anesthetic properties and is used in gastrointestinal, biliary, and urinary tract spasms. [NIH] Diltiazem: A benzothiazepine derivative with vasodilating action due to its antagonism of the actions of the calcium ion in membrane functions. It is also teratogenic. [NIH] Distention: The state of being distended or enlarged; the act of distending. [EU]

Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Hematuria: Presence of blood in the urine. [NIH] Homeostasis: A tendency to stability in the normal body states (internal environment) of the organism. It is achieved by a system of control mechanisms activated by negative feedback; e.g. a high level of carbon dioxide in extracellular fluid triggers increased pulmonary ventilation, which in turn causes a decrease in carbon dioxide concentration. [EU] Labyrinth: The internal ear; the essential part of the organ of hearing. It consists of an osseous and a membranous portion. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Neuroendocrinology: The study of the anatomical and functional relationships between the nervous system and the endocrine system. [NIH] Ondansetron:

A competitive serotonin type 3 receptor antagonist. It is

152 Chronic Fatigue Syndrome

effective in the treatment of nausea and vomiting caused by cytotoxic chemotherapy drugs, including cisplatin, and it has reported anxiolytic and neuroleptic properties. [NIH] Phobia: A persistent, irrational, intense fear of a specific object, activity, or situation (the phobic stimulus), fear that is recognized as being excessive or unreasonable by the individual himself. When a phobia is a significant source of distress or interferes with social functioning, it is considered a mental disorder; phobic disorder (or neurosis). In DSM III phobic disorders are subclassified as agoraphobia, social phobias, and simple phobias. Used as a word termination denoting irrational fear of or aversion to the subject indicated by the stem to which it is affixed. [EU] Pneumonia: Inflammation of the lungs with consolidation. [EU] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH] Sarcoma: A tumour made up of a substance like the embryonic connective tissue; tissue composed of closely packed cells embedded in a fibrillar or homogeneous substance. Sarcomas are often highly malignant. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Staphylococcus: A genus of gram-positive, facultatively anaerobic, coccoid bacteria. Its organisms occur singly, in pairs, and in tetrads and characteristically divide in more than one plane to form irregular clusters. Natural populations of Staphylococcus are membranes of warm-blooded animals. Some species are opportunistic pathogens of humans and animals. [NIH]

Trimebutine: Proposed spasmolytic with possible local anesthetic action used in gastrointestinal disorders. [NIH] Trimipramine: Tricyclic antidepressant similar to IMIPRAMINE, but with more antihistaminic and sedative properties. [NIH] Tuberculosis: Any of the infectious diseases of man and other animals caused by species of mycobacterium. [NIH]

Multimedia 153

CHAPTER 7. SYNDROME

MULTIMEDIA

ON

CHRONIC

FATIGUE

Overview Information on chronic fatigue syndrome can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on chronic fatigue syndrome. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.

Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on chronic fatigue syndrome is the Combined Health Information Database. You will need to limit your search to “video recording” and “chronic fatigue syndrome” using the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “chronic fatigue syndrome” (or synonyms) into the “For these words:” box, you will only receive results on video productions.

154 Chronic Fatigue Syndrome

Bibliography: Multimedia on Chronic Fatigue Syndrome The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in chronic fatigue syndrome (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on chronic fatigue syndrome. For more information, follow the hyperlink indicated: ·

Abdominal discomfort and fatigue. Source: Marshfield Medical Foundation, in cooperation with Marshfield Clinic & St. Joseph's Hospital; Year: 1984; Format: Videorecording; Marshfield, WI: Marshfield Regional Video Network, [1984]

·

Chronic fatigue in children : a tiring topic for the pediatrician. Source: [presented by] Children's Hospital, Boston; Year: 1994; Format: Videorecording; Boynton Beach, FL: Universal Health Communications, [1994]

·

Chronic fatigue syndrome : current issues. Videorecording; [Charlotte, NC: CFIDS], c1997

·

Chronic fatigue syndrome : the facts. Source: a joint production of ... Audio Visual Center and Staff Education; Year: 1991; Format: Videorecording; [Oakland, Calif.]: Kaiser Foundation Health Plan, c1991

·

Chronic fatigue syndrome . Carrollton, TX: HSTN, c2001

·

Chronic viral fatigue syndrome : a real disease? Source: with Anthony Komaroff; Year: 1989; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1989

·

Combat exhaustion. Source: produced by Army Pictorial Service, Signal Corps; Year: 1943; Format: Motion picture; United States: War Office, [1943]

·

Funny, you don't look sick: autobiography of an illness. Source: by Susan Abod; Year: 1995; Format: Videorecording; [United States]: S. Abod and L. Pontoppidan, c1995

·

Human energy crisis: solutions to chronic fatigue. Source: [presented by] Dharma Productions; Year: 1990; Format: Videorecording; Portland, Or.: Institute for Traditional Medicine, c1990

Year: 1997; Format:

Year: 2001; Format: Videorecording;

Multimedia 155

·

Mystery diseases: multiple sclerosis and chronic fatigue. Source: [presented by] the Medical University of South Carolina, College of Pharmacy and Health Communications Network; Year: 1995; Format: Videorecording; Charleston, S.C.: The University, c1995

·

Treating chronic fatigue syndrome with homeopathy. Source: Nat'l. Center for Homeopathy, Los Angeles 1990; Year: 1990; Format: Sound recording; [United States: The Center?, 1990?]

Vocabulary Builder Arteritis: Inflammation of an artery. [NIH] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Dysphagia: Difficulty in swallowing. [EU] Synovitis: Inflammation of a synovial membrane. It is usually painful, particularly on motion, and is characterized by a fluctuating swelling due to effusion within a synovial sac. Synovitis is qualified as fibrinous, gonorrhoeal, hyperplastic, lipomatous, metritic, puerperal, rheumatic, scarlatinal, syphilitic, tuberculous, urethral, etc. [EU] Ulcer: A local defect, or excavation, of the surface of an organ or tissue; which is produced by the sloughing of inflammatory necrotic tissue. [EU] Uveitis: An inflammation of part or all of the uvea, the middle (vascular) tunic of the eye, and commonly involving the other tunics (the sclera and cornea, and the retina). [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU]

Periodicals and News 157

CHAPTER 8. PERIODICALS AND NEWS ON CHRONIC FATIGUE SYNDROME Overview Keeping up on the news relating to chronic fatigue syndrome can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on chronic fatigue syndrome. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover chronic fatigue syndrome beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.

News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on chronic fatigue syndrome is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.

158 Chronic Fatigue Syndrome

PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “chronic fatigue syndrome” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire:

Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to chronic fatigue syndrome. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “chronic fatigue syndrome” (or synonyms). The following was recently listed in this archive for chronic fatigue syndrome: ·

Cytokine overproduction may be key to chronic fatigue syndrome Source: Reuters Medical News Date: October 25, 2001 http://www.reuters.gov/archive/2001/10/25/professional/links/20011 025clin007.html

·

Behavioral therapy best supported so far for chronic fatigue syndrome Source: Reuters Industry Breifing Date: September 20, 2001 http://www.reuters.gov/archive/2001/09/20/business/links/20010920 clin003.html

·

Consensus panel: Stress not the cause of chronic fatigue syndrome Source: Reuters Medical News Date: March 21, 2001 http://www.reuters.gov/archive/2001/03/21/professional/links/20010 321epid007.html

·

Twin study of chronic fatigue syndrome may lead to new therapies Source: Reuters Medical News Date: February 19, 2001 http://www.reuters.gov/archive/2001/02/19/professional/links/20010 219epid005.html

Periodicals and News 159

·

Chronic fatigue syndrome stigma hurts patients Source: Reuters Health eLine Date: January 31, 2001 http://www.reuters.gov/archive/2001/01/31/eline/links/20010131elin 037.html

·

Gulf War syndrome distinct from chronic fatigue syndrome Source: Reuters Medical News Date: January 30, 2001 http://www.reuters.gov/archive/2001/01/30/professional/links/20010 130clin004.html

·

Gulf War ills may be clue to chronic fatigue syndrome Source: Reuters Health eLine Date: January 30, 2001 http://www.reuters.gov/archive/2001/01/30/eline/links/20010130elin 032.html

·

Immunomodulation may benefit patients with chronic fatigue syndrome Source: Reuters Medical News Date: January 29, 2001 http://www.reuters.gov/archive/2001/01/29/professional/links/20010 129clin005.html

·

Fludrocortisone does not improve chronic fatigue syndrome symptoms Source: Reuters Industry Breifing Date: January 02, 2001 http://www.reuters.gov/archive/2001/01/02/business/links/20010102 clin004.html

·

New theory on chronic fatigue syndrome in veterans Source: Reuters Health eLine Date: July 21, 2000 http://www.reuters.gov/archive/2000/07/21/eline/links/20000721elin 005.html

·

Hemispherx signs licensee for chronic fatigue syndrome product Source: Reuters Industry Breifing Date: July 06, 2000 http://www.reuters.gov/archive/2000/07/06/business/links/20000706 inds006.html

160 Chronic Fatigue Syndrome

·

Cerebral perfusion patterns abnormal in chronic fatigue syndrome Source: Reuters Medical News Date: June 23, 2000 http://www.reuters.gov/archive/2000/06/23/professional/links/20000 623clin013.html

·

Biovail acquires Canadian rights to potential drug for chronic fatigue syndrome Source: Reuters Medical News Date: February 14, 2000 http://www.reuters.gov/archive/2000/02/14/professional/links/20000 214inds002.html

·

Severe chronic fatigue syndrome in adolescents linked to psychiatric disorders Source: Reuters Medical News Date: December 24, 1999 http://www.reuters.gov/archive/1999/12/24/professional/links/19991 224epid001.html

·

Urinary test may indicate chronic fatigue syndrome Source: Reuters Medical News Date: November 25, 1999 http://www.reuters.gov/archive/1999/11/25/professional/links/19991 125clin018.html

·

Severe chronic fatigue syndrome has poor prognosis Source: Reuters Health eLine Date: September 24, 1999 http://www.reuters.gov/archive/1999/09/24/eline/links/19990924elin 011.html

·

Poor prognosis associated with severe chronic fatigue syndrome Source: Reuters Medical News Date: September 23, 1999 http://www.reuters.gov/archive/1999/09/23/professional/links/19990 923clin008.html

·

CDC to restore chronic fatigue syndrome funding, make internal changes Source: Reuters Medical News Date: July 28, 1999 http://www.reuters.gov/archive/1999/07/28/professional/links/19990 728rglt005.html

Periodicals and News 161

·

CDC to restore chronic fatigue syndrome funding Source: Reuters Health eLine Date: July 27, 1999 http://www.reuters.gov/archive/1999/07/27/eline/links/19990727elin 001.html

·

GAO investigating CDC chronic fatigue syndrome research Source: Reuters Medical News Date: July 19, 1999 http://www.reuters.gov/archive/1999/07/19/professional/links/19990 719rglt001.html

·

NADH supplements help chronic fatigue syndrome Source: Reuters Health eLine Date: March 08, 1999 http://www.reuters.gov/archive/1999/03/08/eline/links/19990308elin 001.html

·

Low-dose hydrocortisone ameliorates chronic fatigue syndrome Source: Reuters Medical News Date: February 08, 1999 http://www.reuters.gov/archive/1999/02/08/professional/links/19990 208clin013.html

·

Hydrocortisone improves chronic fatigue syndrome symptoms, but suppresses adrenal system Source: Reuters Medical News Date: September 23, 1998 http://www.reuters.gov/archive/1998/09/23/professional/links/19980 923clin006.html

·

Most children with chronic fatigue syndrome recover Source: Reuters Medical News Date: August 04, 1998 http://www.reuters.gov/archive/1998/08/04/professional/links/19980 804clin008.html

·

Functional disability tied to cognitive impairment in chronic fatigue syndrome patients Source: Reuters Medical News Date: May 11, 1998 http://www.reuters.gov/archive/1998/05/11/professional/links/19980 511clin010.html

162 Chronic Fatigue Syndrome

·

Cognitive, Physical Disability Linked In Patients With Chronic Fatigue Syndrome Source: Reuters Medical News Date: April 10, 1998 http://www.reuters.gov/archive/1998/04/10/professional/links/19980 410clin008.html

·

Commensal Bacteria Linked To Chronic Fatigue Syndrome Source: Reuters Medical News Date: September 09, 1997 http://www.reuters.gov/archive/1997/09/09/professional/links/19970 909scie002.html

·

Immunoglobulin Therapy Not Effective In Chronic Fatigue Syndrome Patients Source: Reuters Medical News Date: July 28, 1997 http://www.reuters.gov/archive/1997/07/28/professional/links/19970 728clin003.html

·

Graded Exercise Effective In Patients With Chronic Fatigue Syndrome Source: Reuters Medical News Date: June 06, 1997 http://www.reuters.gov/archive/1997/06/06/professional/links/19970 606clin005.html

·

Hemispherx To Begin Trial Of Ampligen For Chronic Fatigue Syndrome Source: Reuters Medical News Date: May 08, 1997 http://www.reuters.gov/archive/1997/05/08/professional/links/19970 508drgd001.html

·

New Evidence For Role Of Autoimmune Factors In Chronic Fatigue Syndrome Published Source: Reuters Medical News Date: October 30, 1996 http://www.reuters.gov/archive/1996/10/30/professional/links/19961 030clin002.html

·

Steroids Relatively Ineffective In Chronic Fatigue Syndrome Source: Reuters Medical News Date: October 14, 1996 http://www.reuters.gov/archive/1996/10/14/professional/links/19961 014clin003.html

Periodicals and News 163

·

Canada Authorizes First Drug For Chronic Fatigue Syndrome Source: Reuters Medical News Date: May 06, 1996 http://www.reuters.gov/archive/1996/05/06/professional/links/19960 506rglt003.html

·

Antidepressant Therapy Not Effective In Patients With Chronic Fatigue Syndrome Source: Reuters Medical News Date: April 01, 1996 http://www.reuters.gov/archive/1996/04/01/professional/links/19960 401clin008.html

·

Cognitive Behavior Therapy Superior To Medical Care For Chronic Fatigue Syndrome Source: Reuters Medical News Date: January 05, 1996 http://www.reuters.gov/archive/1996/01/05/professional/links/19960 105clin007.html

·

Tilt-Table Test Identifies Chronic Fatigue Syndrome In Some Patients Source: Reuters Medical News Date: September 27, 1995 http://www.reuters.gov/archive/1995/09/27/professional/links/19950 927clin010.html

·

Chronic Fatigue Syndrome Uncommon In General Population Source: Reuters Medical News Date: July 17, 1995 http://www.reuters.gov/archive/1995/07/17/professional/links/19950 717epid001.html

·

Neurally Mediated Hypotension Linked To Chronic Fatigue Syndrome Source: Reuters Medical News Date: March 10, 1995 http://www.reuters.gov/archive/1995/03/10/professional/links/19950 310clin008.html

The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date

164 Chronic Fatigue Syndrome

at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.

Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name. Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “chronic fatigue syndrome” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.

Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “chronic fatigue syndrome” (or synonyms). If you know the name of a company that is relevant to chronic fatigue syndrome, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.

BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “chronic fatigue syndrome” (or synonyms).

Periodicals and News 165

Newsletters on Chronic Fatigue Syndrome Given their focus on current and relevant developments, newsletters are often more useful to patients than academic articles. You can find newsletters using the Combined Health Information Database (CHID). You will need to use the “Detailed Search” option. To access CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Your investigation must limit the search to “Newsletter” and “chronic fatigue syndrome.” Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter.” By making these selections and typing in “chronic fatigue syndrome” or synonyms into the “For these words:” box, you will only receive results on newsletters.

Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “chronic fatigue syndrome” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is updated every 3 months. The following is a typical result when searching for newsletter articles on chronic fatigue syndrome: ·

Fibromyalgia [and] Chronic Fatigue Syndrome: Related Syndromes? Source: FM Aware. 3(2): 15-16. Summer 2000. Contact: Available from National Fibromyalgia Awareness Campaign. c/o Community Partners, 606 S. Olive Street, Suite 2400, Los Angeles, CA 90014. Summary: This newsletter article provides people who have fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) with information on the possible relationship between these disorders. Many doctors and researchers are convinced that FMS and CFS are different manifestations

166 Chronic Fatigue Syndrome

of the same underlying disorder. Although both have been acknowledged as real physical diseases, neither one has a known cause or cure. The article presents the features of and diagnostic criteria for these disorders and outlines the similarities and differences between them. One researcher views FMS and CFS as part of a large spectrum of conditions that he calls Dysregulation Spectrum syndrome. Other researchers have shown that FMS and CFS overlap in patients by as much as 75 percent. Studies have also revealed that many associated disorders and underlying abnormalities are common to both illnesses. More research is needed about both conditions before it can definitively be determined that FMS and CFS are manifestations of a similar disease mechanism.

Academic Periodicals covering Chronic Fatigue Syndrome Academic periodicals can be a highly technical yet valuable source of information on chronic fatigue syndrome. We have compiled the following list of periodicals known to publish articles relating to chronic fatigue syndrome and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on chronic fatigue syndrome published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on chronic fatigue syndrome: ·

Behavioral Medicine (Washington, D. . . (Behav Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Be havioral+Medicine+(Washington,+D.+.+&dispmax=20&dispstart=0

Periodicals and News 167

·

BMJ (Clinical Research Ed.) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=B mj+(Clinical+Research+Ed.+&dispmax=20&dispstart=0

·

General Hospital Psychiatry. (Gen Hosp Psychiatry) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ge neral+Hospital+Psychiatry&dispmax=20&dispstart=0

·

Journal of Clinical Psychology. (J Clin Psychol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Clinical+Psychology&dispmax=20&dispstart=0

·

Journal of Internal Medicine. (J Intern Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Internal+Medicine&dispmax=20&dispstart=0

·

Medical Anthropology. (Med Anthropol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=M edical+Anthropology&dispmax=20&dispstart=0

·

Medical Care. (Med Care) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=M edical+Care&dispmax=20&dispstart=0

·

Psychological Medicine. (Psychol Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychological+Medicine&dispmax=20&dispstart=0

·

Psychosomatic Medicine. (Psychosom Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychosomatic+Medicine&dispmax=20&dispstart=0

Vocabulary Builder Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU]

168 Chronic Fatigue Syndrome

Dyspnea: Difficult or labored breathing. [NIH] Erythropoietin: Glycoprotein hormone, secreted chiefly by the kidney in the adult and the liver in the fetus, that acts on erythroid stem cells of the bone marrow to stimulate proliferation and differentiation. [NIH] Febrile: Pertaining to or characterized by fever. [EU] Hyperalgesia: Excessive sensitiveness or sensibility to pain. [EU] Hypoxia: Reduction of oxygen supply to tissue below physiological levels despite adequate perfusion of the tissue by blood. [EU] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Neutropenia: Leukopenia in which the decrease in white blood cells is chiefly in neutrophils. [EU] Perfusion: 1. the act of pouring over or through, especially the passage of a fluid through the vessels of a specific organ. 2. a liquid poured over or through an organ or tissue. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Transfusion: The introduction of whole blood or blood component directly into the blood stream. [EU]

Physician Guidelines and Databases 169

CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.

NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·

Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm

·

National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/

·

National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html

·

National Institute of Allergy and Infectious Diseases (NIAID); guidelines available at http://www.niaid.nih.gov/publications/

170 Chronic Fatigue Syndrome

·

Centers for Disease Control and Prevention; various fact sheets on infectious diseases available at http://www.cdc.gov/health/diseases.htm

NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.28 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:29 ·

Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html

·

HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·

NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html

·

Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/

·

Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html

Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 29 See http://www.nlm.nih.gov/databases/databases.html. 28

Physician Guidelines and Databases 171

·

Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html

·

Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/

·

Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html

·

Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·

Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html

·

MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html

·

Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html

·

Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study and treat chronic fatigue syndrome, the following are particularly noteworthy. The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and chronic fatigue syndrome using the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “chronic fatigue syndrome” (or

172 Chronic Fatigue Syndrome

synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with chronic fatigue syndrome. The following is a sample result: ·

Inability of Retroviral Tests to Identify Persons With Chronic Fatigue Syndrome, 1992 Source: Morbidity and Mortality Weekly Report; Vol. 42, No. 10; March 29, 1993. Contact: US Government Printing Office, PO Box 371954, Pittsburgh, PA, 15250-7954, (202) 512-1800, http://www.access.gpo.gov. Summary: Chronic fatigue syndrome (CFS) is characterized by prolonged, debilitating fatigue. Although the cause of CFS unknown, CDC and researchers in other organizations have been investigating whether infection with a previously unidentified retrovirus might be an etiologic factor. Based on reports suggesting that retroviral infection with a human T-lymphotropic virus type 2 (HTLV-II)-like retrovirus or a spumavirus might be associated with CFS, some research and commercial laboratories developed assays to test specimens from persons with CFS. Even though the hypothesized association between infection with retroviruses and CFS has not been confirmed, these tests are used commonly to evaluate patients with CFS. This report summarizes the findings of a controlled, blinded study conducted in 1992 to determine whether three retroviral tests can distinguish serologically between patients with CFS (i.e., case-patients) and healthy controls.

·

Neuropsychological Rehabilitation Source: Kansas City, MO: National Chronic Fatigue Syndrome and Fibromyalgia Association. [8 p.]. Contact: Available from National Chronic Fatigue Syndrome and Fibromyalgia Association. 3521 Broadway, Suite 222, Kansas City, MO 64111. (816) 931-4777; FAX (816) 931-5557. Price: $0.25. Summary: This brochure, written for mental health professionals, offers suggestions and techniques for assisting patients with chronic fatigue syndrome, Epstein-Barr virus, and related diseases. Information is presented about how to manage the following patient situations: impaired alertness and mental fatigue, deficits in sustained attentional capacities, mental confusion, impaired ability to carry out a plan of action or sequential thinking/actions, and memory deficits.

Physician Guidelines and Databases 173

·

Coping Skills: How to Maintain Your Equilibrium in the CFS Balancing Act Source: Kansas City, MO: National Chronic Fatigue Syndrome and Fibromyalgia Association. [8 p.]. Contact: Available from National Chronic Fatigue Syndrome and Fibromyalgia Association. 3521 Broadway, Suite 222, Kansas City, MO 64111. (816) 931-4777; FAX (816) 931-5557. Price: $0.25. Summary: This brochure presents guidelines for coping with the physical and emotional stresses caused by chronic fatigue syndrome (CFS). Suggestions for coping with the disease are discussed and include topics such as carefully organizing one's activities, utilizing support services, communicating openly with friends and family, resting adequately, and maintaining a positive attitude.

The NLM Gateway30 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.31 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.32 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “chronic fatigue syndrome” (or synonyms) into the search box and click “Search.” The results will be

Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 32 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 30 31

174 Chronic Fatigue Syndrome

presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 344613 Books / Periodicals / Audio Visual 2564 Consumer Health 292 Meeting Abstracts 3093 Other Collections 100 Total 350662

HSTAT33 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.34 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.35 Simply search by “chronic fatigue syndrome” (or synonyms) at the following Web site: http://text.nlm.nih.gov.

Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 35 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 33 34

Physician Guidelines and Databases 175

Coffee Break: Tutorials for Biologists36 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.37 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.38 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.

Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·

CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.

·

Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.

·

Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.

·

MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical

36 Adapted

from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 38 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.

37

176 Chronic Fatigue Syndrome

literature, and to explore relevant Web http://www.med.virginia.edu/~wmd4n/medweaver.html. ·

sites;

see

Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html.

The Genome Project and Chronic Fatigue Syndrome With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to chronic fatigue syndrome. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.

Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).39 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “chronic fatigue syndrome” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for chronic fatigue syndrome: Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.

39

Physician Guidelines and Databases 177

·

Adrenal Hypoplasia, Congenital Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?300200

·

Anemia, Sideroblastic, X-linked Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?301300

·

Carnitine Deficiency, Systemic Primary Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?212140

·

Complex Iv, Mitochondrial Respiratory Chain, Deficiency of Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?220110

·

Corticosteroid-binding Globulin Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?122500

·

Cystic Fibrosis Transmembrane Conductance Regulator; Cftr Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?602421

·

Dehydrated Hereditary Stomatocytosis Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?194380

·

Fabry Disease Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?301500

·

Glycogen Storage Disease Ii Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?232300

·

Glycogen Storage Disease V Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?232600 Genes and Disease (NCBI - Map)

The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this

178 Chronic Fatigue Syndrome

site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·

Immune System: Fights invaders. Examples: Asthma, autoimmune polyglandular syndrome, Crohn’s disease, DiGeorge syndrome, familial Mediterranean fever, immunodeficiency with Hyper-IgM, severe combined immunodeficiency. Web site: http://www.ncbi.nlm.nih.gov/disease/Immune.html

·

Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html

·

Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html

·

Transporters: Pumps and channels. Examples: Cystic Fibrosis, deafness, diastrophic dysplasia, Hemophilia A, long-QT syndrome, Menkes syndrome, Pendred syndrome, polycystic kidney disease, sickle cell anemia, Wilson’s disease, Zellweger syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Transporters.html

Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·

PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

·

Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide

·

Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein

Physician Guidelines and Databases 179

·

Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure

·

Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome

·

PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset

·

OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

·

Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy

·

Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books

·

ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo

·

NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/

To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=genom e, and then select the database that you would like to search. The databases available are listed in the drop box next to “Search.” In the box next to “for,” enter “chronic fatigue syndrome” (or synonyms) and click “Go.”

Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database40 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form.

Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html.

40

180 Chronic Fatigue Syndrome

At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html you can also search across syndromes using an alphabetical index. You can also search at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database41 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “chronic fatigue syndrome” (or synonyms) into the search box, and review the results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to nonprofessionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.

Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission.

41

Physician Guidelines and Databases 181

Specialized References The following books are specialized references written for professionals interested in chronic fatigue syndrome (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · 2002 Pocket Book of Infectious Disease Therapy by John G. Bartlett; Paperback - 348 pages, 11th edition (November 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0781734320; http://www.amazon.com/exec/obidos/ASIN/0781734320/icongroupinterna · Clinical Virology by Douglas D. Richman (Editor), et al; Hardcover - 1355 pages, 1st edition (January 15, 1997), Churchill Livingstone; ISBN: 0443076537; http://www.amazon.com/exec/obidos/ASIN/0443076537/icongroupinterna · Current Diagnosis & Treatment in Infectious Diseases by Walter R. Wilson (Editor), et al; Paperback - 985 pages, 1st edition (June 22, 2001), McGraw-Hill Professional Publishing; ISBN: 0838514944; http://www.amazon.com/exec/obidos/ASIN/0838514944/icongroupinterna · Hunter’s Tropical Medicine and Emerging Infectious Diseases by George W. Hunter (Editor), et al; Hardcover - 1192 pages, 8th edition (January 15, 2000), W B Saunders Co; ISBN: 0721662234; http://www.amazon.com/exec/obidos/ASIN/0721662234/icongroupinterna · Infectious Disease by Barbara Bannister, et al; Paperback - 506 pages, 2nd edition (August 15, 2000), Blackwell Science Inc.; ISBN: 0632053194; http://www.amazon.com/exec/obidos/ASIN/0632053194/icongroupinterna · Infectious Disease Epidemiology : Theory and Practice by Kenrad E. Nelson, et al; Hardcover - 600 pages (May 2000), Aspen Publishers, Inc.; ISBN: 083421766X; http://www.amazon.com/exec/obidos/ASIN/083421766X/icongroupinterna · Mandell, Douglas, and Bennett’s Principles & Practice of Infectious Diseases (2 Vol. Set) by Gerald L. Mandell (Editor), et al; Hardcover - 3263 pages, 5th edition (June 15, 2000), Churchill Livingstone; ISBN: 044307593X; http://www.amazon.com/exec/obidos/ASIN/044307593X/icongroupinterna · Molecular Epidemiology of Infectious Diseases by R. C. Andrew Thompson; Hardcover - 326 pages, 1st edition (October 15, 2000), Edward Arnold; ISBN: 0340759097; http://www.amazon.com/exec/obidos/ASIN/0340759097/icongroupinterna · Pathology and Pathogenesis of Human Viral Disease by John E. Craighead; Hardcover - 447 pages, 1st edition (March 15, 2000), Academic

182 Chronic Fatigue Syndrome

Press; ISBN: 012195160X; http://www.amazon.com/exec/obidos/ASIN/012195160X/icongroupinterna · Principles and Practice of Clinical Virology, 4th Edition by Arie J. Zuckerman (Editor), et al; Hardcover - 800 pages, 4th edition (December 13, 1999), John Wiley & Sons; ISBN: 0471973408; http://www.amazon.com/exec/obidos/ASIN/0471973408/icongroupinterna · Rickettsial Infection and Immunity (Infectious Agents and Pathogenesis) by Burt Anderson (Editor), et al; Hardcover (August 1997), Plenum Publishing Corp.; ISBN: 0306455285; http://www.amazon.com/exec/obidos/ASIN/0306455285/icongroupinterna · Viral Infections of Humans : Epidemiology and Control by Alfred S. Evans (Editor), Richard A. Kaslow (Editor); Hardcover - 1078 pages, 4th edition (January 15, 1997), Plenum Publishing Corp.; ISBN: 0306448556; http://www.amazon.com/exec/obidos/ASIN/0306448556/icongroupinterna

Vocabulary Builder Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Hypoplasia: Incomplete development or underdevelopment of an organ or tissue. [EU] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU]

Dissertations 183

CHAPTER 10. DISSERTATIONS ON CHRONIC FATIGUE SYNDROME Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to chronic fatigue syndrome. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.

Dissertations on Chronic Fatigue Syndrome ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to chronic fatigue syndrome. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with chronic fatigue syndrome:

184 Chronic Fatigue Syndrome

·

Acknowledging the Elusive: the Dilemma of Defining Chronic Fatigue Syndrome by Macdonald, Goldie, Phd from University of Florida, 1998, 168 pages http://wwwlib.umi.com/dissertations/fullcit/9919607

·

Characterization of Human Rnase L: Inhibition of Hiv-1 Replication and Biochemical Evidence for a Rnase L Dysfunction in Patients with Chronic Fatigue Syndrome (immune Deficiency) by Shetzline, Susan Eva; Phd from Temple University, 2001, 211 pages http://wwwlib.umi.com/dissertations/fullcit/9997296

·

Stigma and Legitimation in Chronic Fatigue Syndrome: the Role of Social Location by Beaulieu, Marcia Cecille; Phd from Mcgill University (canada), 1997, 358 pages http://wwwlib.umi.com/dissertations/fullcit/NQ44359

·

The Relationship between Coping Focus and Psychological Well-being in Women with Chronic Fatigue Syndrome by Schmall, Susan, Phd from California Institute of Integral Studies, 1991, 127 pages http://wwwlib.umi.com/dissertations/fullcit/9224783

·

The Role of Severe Life Stress, Social Support, and Attachment in the Onset of Chronic Fatigue Syndrome by Mayer, Melissa Isabella; Edd from University of Toronto (canada), 1998, 111 pages http://wwwlib.umi.com/dissertations/fullcit/NQ41591

Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to chronic fatigue syndrome is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.

Vocabulary Builder Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU]

185

PART III. APPENDICES

ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with chronic fatigue syndrome and related conditions.

Researching Your Medications 187

APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with chronic fatigue syndrome. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internetbased databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for chronic fatigue syndrome. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of chronic fatigue syndrome. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-touse public sources.

188 Chronic Fatigue Syndrome

Your Medications: The Basics42 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of chronic fatigue syndrome. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with chronic fatigue syndrome take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·

Ask about all parts of your treatment, including diet changes, exercise, and medicines.

·

Ask about the risks and benefits of each medicine or other treatment you might receive.

·

Ask how often you or your doctor will check for side effects from a given medication.

Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for chronic fatigue syndrome. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·

The name of the medicine and what it is supposed to do.

·

How and when to take the medicine, how much to take, and for how long.

·

What food, drinks, other medicines, or activities you should avoid while taking the medicine.

·

What side effects the medicine may have, and what to do if they occur.

42

This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.

Researching Your Medications 189

·

If you can get a refill, and how often.

·

About any terms or directions you do not understand.

·

What to do if you miss a dose.

·

If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).

Do not forget to tell your doctor about all the medicines you are currently taking (not just those for chronic fatigue syndrome). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·

Name of medicine

·

Reason taken

·

Dosage

·

Time(s) of day

Also include any over-the-counter medicines, such as: ·

Laxatives

·

Diet pills

·

Vitamins

·

Cold medicine

·

Aspirin or other pain, headache, or fever medicine

·

Cough medicine

·

Allergy relief medicine

·

Antacids

·

Sleeping pills

·

Others (include names)

190 Chronic Fatigue Syndrome

Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for chronic fatigue syndrome. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.43 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of chronic fatigue syndrome. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to chronic fatigue syndrome:

Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.

43

Researching Your Medications 191

Acyclovir ·

Systemic - U.S. Brands: Zovirax http://www.nlm.nih.gov/medlineplus/druginfo/acyclovirsystem ic202008.html

·

Topical - U.S. Brands: Zovirax http://www.nlm.nih.gov/medlineplus/druginfo/acyclovirtopical 202009.html

Anabolic Steroids ·

Systemic - U.S. Brands: Anadrol-50; Deca-Durabolin; Durabolin; Durabolin-50; Hybolin Decanoate; Hybolin-Improved; Kabolin; Oxandrin; Winstrol http://www.nlm.nih.gov/medlineplus/druginfo/anabolicsteroids systemic202035.html

Anagrelide ·

Systemic - U.S. Brands: Agrylin http://www.nlm.nih.gov/medlineplus/druginfo/anagrelidesyste mic203493.html

Anastrozole ·

Systemic - U.S. Brands: Arimidex http://www.nlm.nih.gov/medlineplus/druginfo/anastrozolesyste mic203659.html

Buspirone ·

Systemic - U.S. Brands: BuSpar http://www.nlm.nih.gov/medlineplus/druginfo/buspironesyste mic202100.html

Fludrocortisone ·

Systemic - U.S. Brands: Florinef http://www.nlm.nih.gov/medlineplus/druginfo/fludrocortisones ystemic202244.html

Fluoxetine ·

Systemic - U.S. Brands: Prozac; Sarafem http://www.nlm.nih.gov/medlineplus/druginfo/fluoxetinesyste mic202247.html

192 Chronic Fatigue Syndrome

Lyme Disease Vaccine ·

Systemic - U.S. Brands: LYMErix http://www.nlm.nih.gov/medlineplus/druginfo/lymediseasevac cinesystemic203759.html

Nystatin ·

Oral - U.S. Brands: Mycostatin; Nilstat; Nystex http://www.nlm.nih.gov/medlineplus/druginfo/nystatinoral202 417.html

·

Topical - U.S. Brands: http://www.nlm.nih.gov/medlineplus/druginfo/nystatintopical2 02418.html

·

Topical - U.S. Brands: Mycostatin; Nilstat; Nystex; Nystop; PediDri http://www.nlm.nih.gov/medlineplus/druginfo/nystatintopical2 02418.html

Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office.

Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters’ database as associated with chronic fatigue syndrome (including those with contraindications):44 ·

Immune Globulin Intravenous http://www.reutershealth.com/atoz/html/Immune_Globulin_Intraven ous.htm

·

Immune Globulin Intravenous (IGIV) http://www.reutershealth.com/atoz/html/Immune_Globulin_Intraven ous_(IGIV).htm

44

Adapted from A to Z Drug Facts by Facts and Comparisons.

Researching Your Medications 193

·

Immune Globulin IV http://www.reutershealth.com/atoz/html/Immune_Globulin_IV.htm

Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.

Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm.

Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.

Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with chronic fatigue syndrome--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat chronic fatigue syndrome or potentially create deleterious side effects in patients with chronic fatigue syndrome. You should ask your physician about any contraindications, especially as these

194 Chronic Fatigue Syndrome

might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.

A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with chronic fatigue syndrome. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with chronic fatigue syndrome. The FDA warns patients to watch out for45: ·

45

Secret formulas (real scientists share what they know)

This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.

Researching Your Medications 195

·

Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles)

·

Quick, painless, or guaranteed cures

·

If it sounds too good to be true, it probably isn’t true.

If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.

General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Antiviral Therapy by E. Blair (Editor), et al; Paperback - 161 pages, 1st edition (May 15, 1998), Springer Verlag; ISBN: 0387915109; http://www.amazon.com/exec/obidos/ASIN/0387915109/icongroupinterna · Drug Interactions in Infectious Diseases (Infectious Disease) by Stephen C. Piscitelli (Editor), et al; Hardcover - 372 pages (September 2000), Humana Press; ISBN: 0896037509; http://www.amazon.com/exec/obidos/ASIN/0896037509/icongroupinterna · Management of Antimicrobials in Infectious Diseases: Impact of Antibiotic Resistance by Arch G. Mainous, Ph.D. (Editor), et al; Hardcover - 350 pages, 1st edition (January 15, 2001), Humana Press; ISBN: 0896038211; http://www.amazon.com/exec/obidos/ASIN/0896038211/icongroupinterna · Manual of Antibiotics and Infectious Diseases: Treatment and Prevention by John E. Conte; Paperback - 755 pages, 9th edition (December 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0781723167; http://www.amazon.com/exec/obidos/ASIN/0781723167/icongroupinterna

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters:

196 Chronic Fatigue Syndrome

Buspirone: An anxiolytic agent and a serotonin receptor agonist belonging to the azaspirodecanedione class of compounds. Its structure is unrelated to those of the benzodiazepines, but it has an efficacy comparable to diazepam. [NIH]

Nystatin: Macrolide antifungal antibiotic complex produced by Streptomyces noursei, S. aureus, and other Streptomyces species. The biologically active components of the complex are nystatin A1, A2, and A3. [NIH]

Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU]

Researching Alternative Medicine 197

APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to chronic fatigue syndrome. Finally, at the conclusion of this chapter, we will provide a list of readings on chronic fatigue syndrome from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine.

What Is CAM?46 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 46

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.

198 Chronic Fatigue Syndrome

treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.

What Are the Domains of Alternative Medicine?47 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are

47

Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.

Researching Alternative Medicine 199

practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.

200 Chronic Fatigue Syndrome

Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.

Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.

Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.

Researching Alternative Medicine 201

Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.

Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.48

48

Adapted from http://www.4woman.gov/faq/alternative.htm.

202 Chronic Fatigue Syndrome

Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.

Finding CAM References on Chronic Fatigue Syndrome Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for chronic fatigue syndrome. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required. The Combined Health Information Database For a targeted search, The Combined Health Information Database is a bibliographic database produced by health-related agencies of the Federal Government (mostly from the National Institutes of Health). This database is updated four times a year at the end of January, April, July, and October. Check the titles, summaries, and availability of CAM-related information by using the “Simple Search” option at the following Web site: http://chid.nih.gov/simple/simple.html. In the drop box at the top, select “Complementary and Alternative Medicine.” Then type “chronic fatigue syndrome” (or synonyms) in the second search box. We recommend that you select 100 “documents per page” and to check the “whole records” options. The following was extracted using this technique: ·

Nutritional Strategies for Treating Chronic Fatigue Syndrome Source: Alternative Medicine Review. 5(2): 93-108. 2000.

Researching Alternative Medicine 203

Summary: This journal article discusses promising nutritional treatments for chronic fatigue syndrome (CFS). A review of the literature suggests a number of marginal nutritional deficiencies may have etiologic relevance. These include deficiencies of various B vitamins, vitamin C, magnesium, sodium, zinc, L-tryptophan, L-carnitine, coenzyme Q10, and essential fatty acids. Any of these nutrients could be marginally deficient in CFS patients, a finding that appears to be primarily due to the illness process rather than to inadequate diets. The data suggest that marginal deficiencies not only contribute to the clinical manifestations of the syndrome but also are detrimental to the healing processes. Therefore, when feasible, they should be identified by objective testing and their resolution assured by repeat testing following the initiation of treatment. Moreover, because of the rarity of serious adverse reactions, the difficulty in ruling out marginal deficiencies, and the possibility that some of the therapeutic benefits of nutritional supplements may be due to pharmacologic effects, in the author's opinion it seems rational to consider supplementing CFS patients with the identified nutrients, along with a general high-potency vitamin and mineral supplement, at least for a trial period. The article has 6 tables and 95 references. (AA-M). ·

Vitamin B Status in Patients With Chronic Fatigue Syndrome Source: Journal of the Royal Society of Medicine. 92(4): 183-185. April 1999. Summary: This journal article describes a study of vitamin B status in patients with chronic fatigue syndrome (CFS). The participants were 12 CFS patients who had not taken any vitamin preparation during their illness, and 18 healthy controls matched for age and sex. Functional status for the B vitamins pyridoxine, riboflavin, and thiamine was assessed by measuring the vitamin-dependent activities of aspartate aminotransferase, glutathione reductase, and transketolase, respectively, in erythrocyte hemolysates before and after 'in-vitro' addition of the relevant vitamin. For all three enzymes the basal and activated activities were lower in the CFS patients than in controls. The greatest differences were found in aspartate aminotransferase (pyridoxine) activities. The activation ratios, however, did not differ between groups. These findings suggest a reduced functional vitamin B status, particularly of pyridoxine, in CFS patients. The article has 1 figure, 1 table, and 18 references.

·

Complementary Therapies for Chronic Fatigue Syndrome Source: Positive Health. Number 25: 35-37. February 1998. Summary: This journal article describes one practitioner's complementary therapies for chronic fatigue syndrome (CFS). It begins with a patient's

204 Chronic Fatigue Syndrome

story of her illness and how treatment by the author may have helped her CFS. It discusses controversy in the medical profession about whether CFS exists as a separate illness and examines current ideas about the cause of CFS. The author then describes his therapies for treating CFS: acupressure and Reiki, detoxification of the body, manual lymphatic drainage (MLD), and cell treatment using trace elements. The article explains the theoretical aspects of acupressure and Reiki. According to the article, detoxification of the body involves diet, breathing exercises, physical exercise, concentration of the mind and body, rest of the mind and body, and sleep; these ensure that all bodily functions (perspiration, breathing, urination, and defecation) work correctly. The author focuses on bodily elimination because he considers it essential to the treatment of CFS and other serious pathological conditions. The author also explains how he performs MLD and cell treatment with trace elements. ·

Natural Approach to Healing Chronic Fatigue Syndrome Source: Positive Health. Number 25: 38-39. February 1998. Summary: This journal article describes a holistic approach to treating chronic fatigue syndrome (CFS) on an emotional level, a physical level, and a spiritual level. According to the author, the priority is a strong immune system. The article discusses ways in which a person's emotional, physical, and spiritual states may affect their immune system. Awareness of stressors and weakening of physical resources and the desire to make changes are described as creating a more flexible and easily healed immune system, while feelings of being defensive or of suppressing anger are described as creating an overactive or suppressed immune system, respectively. The article discusses how eating habits can affect the immune system, and how the quality of food affects people with CFS. It also describes spiritual experiences as part of dealing with CFS. This journal article contains a list of three sources of additional information.

·

In Vitro Effects of Echinacea and Ginseng on Natural Killer and Antibody-Dependent Cell Cytotoxicity in Healthy Subjects and Chronic Fatigue Syndrome or Acquired Source: Immunopharmacology. 35: 229-235. 1997. Summary: This journal article reports the effects of echinacea and ginseng extracts on cellular immune function of peripheral blood mononuclear cells (PBMC) from healthy people and patients with either the chronic fatigue syndrome or the acquired immunodeficiency syndrome. PBMC isolated on a Ficoll-hypaque density gradient were tested in the presence or absence of varying concentrations of each extract for natural killer

Researching Alternative Medicine 205

(NK) cell activity versus K562 cells and for antibody-dependent cellular cytotoxicity (ADCC) against human herpes virus 6 infected H9 cells. Extracts of 'Echinacea purpurea' at concentrations of 0.1 ug/kg or greater and 'Panax ginseng' at concentrations of 10 ug/kg or greater significantly enhanced NK function of all participant groups. Similarly, both herbs significantly increased ADCC of PBMC from all groups. The results suggest that extracts of echinacea and ginseng can enhance cellular immune function of PBMC from both healthy individuals and patients with depressed cellular immunity. The article has 2 figures and 30 references. (AA-M). ·

Cognitive Behaviour Therapy for the Chronic Fatigue Syndrome: A Randomised Controlled Trial Source: British Medical Journal. 312(7022): 22-26. January 6, 1996. Summary: This journal article describes a British study of the acceptability and efficacy of cognitive behavior therapy added to the medical care of patients with chronic fatigue syndrome. The participants were 60 consecutive referrals to an infectious diseases outpatient clinic who met consensus criteria for chronic fatigue syndrome. All patients received standard medical care consisting of assessment, advice, and followup in general practice. Thirty patients were offered 16 weekly individual sessions of cognitive behavior therapy in addition to their medical care, and all accepted. The main outcome measures were the proportion of patients who achieved normal daily functioning (Karnofsky score of 80 or higher), and the proportion who achieved a clinically significant improvement (change in Karnofsky score of 10 points or more) by 12 months after study entry. An intent to treat analysis showed that 73 percent of the cognitive behavior therapy group achieved a satisfactory outcome, compared with 27 percent of the control group. Similar differences were observed on secondary measures such as interference with activities, days in bed per week, distance walked in 6 minutes, fatigue severity, anxiety, and depression. The authors conclude that adding cognitive behavior therapy to the medical care of patients with chronic fatigue syndrome is acceptable to patients and leads to a sustained reduction in functional impairment. The article has 5 tables and 30 references. (AA-M).

National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has

206 Chronic Fatigue Syndrome

created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to chronic fatigue syndrome and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “chronic fatigue syndrome” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to chronic fatigue syndrome: ·

A body with chronic fatigue syndrome as a battleground for the fight to separate from the mother. Author(s): Simpson M. Source: The Journal of Analytical Psychology. 1997 April; 42(2): 201-16. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9161121&dopt=Abstract

·

A psychodynamic view of the chronic fatigue syndrome. The role of object relations in etiology and treatment. Author(s): Taerk G, Gnam W. Source: General Hospital Psychiatry. 1994 September; 16(5): 319-25. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7995502&dopt=Abstract

·

Attributions in chronic fatigue syndrome and fibromyalgia syndrome in tertiary care. Author(s): Neerinckx E, Van Houdenhove B, Lysens R, Vertommen H, Onghena P. Source: J Rheumatol. 2000 April; 27(4): 1051-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10782836&dopt=Abstract

·

Chronic fatigue syndrome and fibromyalgia: clinical assessment and treatment. Author(s): Friedberg F, Jason LA. Source: Journal of Clinical Psychology. 2001 April; 57(4): 433-55. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11255201&dopt=Abstract

·

Chronic fatigue syndrome and liquorice. Author(s): Baschetti R.

Researching Alternative Medicine 207

Source: N Z Med J. 1995 April 26; 108(998): 156-7. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7761058&dopt=Abstract ·

Chronic fatigue syndrome and myalgic encephalomyelitis. Author(s): Lawrie SM, Pelosi AJ. Source: Bmj (Clinical Research Ed.). 1994 July 23; 309(6949): 275. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7702651&dopt=Abstract

·

Chronic fatigue syndrome and neurally mediated hypotension. Author(s): Baschetti R. Source: Jama : the Journal of the American Medical Association. 1996 February 7; 275(5): 359; Discussion 360. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8569008&dopt=Abstract

·

Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny. Author(s): Hume M. Source: Bmj (Clinical Research Ed.). 1997 October 11; 315(7113): 949. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9361555&dopt=Abstract

·

Chronic fatigue syndrome in children. Patient organisations are denied a voice. Author(s): Jacobs G. Source: Bmj (Clinical Research Ed.). 1997 October 11; 315(7113): 949. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9361554&dopt=Abstract

·

Chronic fatigue syndrome. Author(s): Gerow G, Poierier MB, Alt R. Source: Journal of Manipulative and Physiological Therapeutics. 1992 October; 15(8): 529-35. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1492874&dopt=Abstract

208 Chronic Fatigue Syndrome

·

Chronic fatigue syndrome. 2: Treatment and future research. Author(s): Kantrowitz FG, Farrar DJ, Locke SE. Source: Behavioral Medicine (Washington, D.C.). 1995 Spring; 21(1): 1724. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7579771&dopt=Abstract

·

Chronic fatigue syndrome. A fresh look at an old problem. Author(s): McSherry J. Source: Can Fam Physician. 1993 February; 39: 336-40. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8495124&dopt=Abstract

·

Chronic fatigue syndrome. Self help groups give valuable support. Author(s): Ho-Yen DO, Grant A. Source: Bmj (Clinical Research Ed.). 1994 May 14; 308(6939): 1298-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8205030&dopt=Abstract

·

Chronic fatigue syndrome: a literature review from a physiatric perspective. Author(s): Jain SS, DeLisa JA. Source: American Journal of Physical Medicine & Rehabilitation / Association of Academic Physiatrists. 1998 March-April; 77(2): 160-7. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9558019&dopt=Abstract

·

Chronic fatigue syndrome: an old virus with a new diagnosis. Author(s): Coulter P. Source: Journal of Community Health Nursing. 1988; 5(2): 87-95. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2836564&dopt=Abstract

·

Chronic fatigue syndrome: new insights and old ignorance. Author(s): Evengard B, Schacterle RS, Komaroff AL.

Researching Alternative Medicine 209

Source: Journal of Internal Medicine. 1999 November; 246(5): 455-69. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10583715&dopt=Abstract ·

Chronic fatigue syndrome: oxidative stress and dietary modifications. Author(s): Logan AC, Wong C. Source: Alternative Medicine Review : a Journal of Clinical Therapeutic. 2001 October; 6(5): 450-9. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11703165&dopt=Abstract

·

Chronic fatigue syndrome: reviewing the research findings. Author(s): Johnson SK, DeLuca J, Natelson BH. Source: Annals of Behavioral Medicine : a Publication of the Society of Behavioral Medicine. 1999 Summer; 21(3): 258-71. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10626034&dopt=Abstract

·

Chronic fatigue syndrome: sufferers' evaluation of medical support. Author(s): Ax S, Gregg VH, Jones D. Source: Journal of the Royal Society of Medicine. 1997 May; 90(5): 250-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9204018&dopt=Abstract

·

Chronic fatigue, chronic fatigue syndrome, and fibromyalgia. Disability and health-care use. Author(s): Bombardier CH, Buchwald D. Source: Medical Care. 1996 September; 34(9): 924-30. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8792781&dopt=Abstract

·

Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial. Author(s): Deale A, Chalder T, Marks I, Wessely S. Source: The American Journal of Psychiatry. 1997 March; 154(3): 408-14. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9054791&dopt=Abstract

·

Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial.

210 Chronic Fatigue Syndrome

Author(s): Prins JB, Bleijenberg G, Bazelmans E, Elving LD, de Boo TM, Severens JL, van der Wilt GJ, Spinhoven P, van der Meer JW. Source: Lancet. 2001 March 17; 357(9259): 841-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11265953&dopt=Abstract ·

Cognitive behaviour therapy for the chronic fatigue syndrome. Evening primrose oil and magnesium have been shown to be effective. Author(s): Chilton SA. Source: Bmj (Clinical Research Ed.). 1996 April 27; 312(7038): 1096; Discussion 1098. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8616424&dopt=Abstract

·

Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome. Author(s): Ware NC, Kleinman A. Source: Psychosomatic Medicine. 1992 September-October; 54(5): 546-60. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1438658&dopt=Abstract

·

Cytokines and chronic fatigue syndrome. Author(s): Patarca R. Source: Annals of the New York Academy of Sciences. 2001 March; 933: 185-200. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12000020&dopt=Abstract

·

Does high 'action-proneness' make people more vulnerable to chronic fatigue syndrome? A controlled psychometric study. Author(s): Van Houdenhove B, Onghena P, Neerinckx E, Hellin J. Source: Journal of Psychosomatic Research. 1995 July; 39(5): 633-40. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7490698&dopt=Abstract

·

EEG biofeedback as a treatment for chronic fatigue syndrome: a controlled case report. Author(s): James LC, Folen RA.

Researching Alternative Medicine 211

Source: Behavioral Medicine (Washington, D.C.). 1996 Summer; 22(2): 7781. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8879459&dopt=Abstract ·

Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. Author(s): Goldenberg DL. Source: Current Opinion in Rheumatology. 1991 April; 3(2): 247-58. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2064904&dopt=Abstract

·

Fibromyalgia, chronic fatigue syndrome, and myofascial pain. Author(s): Goldenberg DL. Source: Current Opinion in Rheumatology. 1996 March; 8(2): 113-23. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8732795&dopt=Abstract

·

From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome. Author(s): Sachs L. Source: Medical Anthropology. 2001; 19(4): 299-317. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11800317&dopt=Abstract

·

Gait abnormalities in chronic fatigue syndrome. Author(s): Boda WL, Natelson BH, Sisto SA, Tapp WN. Source: Journal of the Neurological Sciences. 1995 August; 131(2): 156-61. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7595641&dopt=Abstract

·

Hypnosis in chronic fatigue syndrome. Author(s): Gregg VH. Source: Journal of the Royal Society of Medicine. 1997 December; 90(12): 682-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9496296&dopt=Abstract

·

Illness beliefs and treatment outcome in chronic fatigue syndrome. Author(s): Deale A, Chalder T, Wessely S.

212 Chronic Fatigue Syndrome

Source: Journal of Psychosomatic Research. 1998 July; 45(1 Spec No): 7783. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9720857&dopt=Abstract ·

Immunological and psychological dysfunction in patients receiving immunotherapy for chronic fatigue syndrome. Author(s): Hickie I, Lloyd A, Wakefield D. Source: The Australian and New Zealand Journal of Psychiatry. 1992 June; 26(2): 249-56. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1642616&dopt=Abstract

·

Impaired associative learning in chronic fatigue syndrome. Author(s): Servatius RJ, Tapp WN, Bergen MT, Pollet CA, Drastal SD, Tiersky LA, Desai P, Natelson BH. Source: Neuroreport. 1998 April 20; 9(6): 1153-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9601685&dopt=Abstract

·

In vitro effects of echinacea and ginseng on natural killer and antibody-dependent cell cytotoxicity in healthy subjects and chronic fatigue syndrome or acquired immunodeficiency syndrome patients. Author(s): See DM, Broumand N, Sahl L, Tilles JG. Source: Immunopharmacology. 1997 January; 35(3): 229-35. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9043936&dopt=Abstract

·

Information processing in chronic fatigue syndrome: a preliminary investigation of suggestibility. Author(s): DiClementi JD, Schmaling KB, Jones JF. Source: Journal of Psychosomatic Research. 2001 November; 51(5): 679-86. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11728509&dopt=Abstract

·

Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. Author(s): Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Ramirez G.

Researching Alternative Medicine 213

Source: Jama : the Journal of the American Medical Association. 2001 September 19; 286(11): 1360-8. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11560542&dopt=Abstract ·

Is the chronic fatigue syndrome best understood as a primary disturbance of the sense of effort? Author(s): Lawrie SM, MacHale SM, Power MJ, Goodwin GM. Source: Psychological Medicine. 1997 September; 27(5): 995-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9300505&dopt=Abstract

·

Liquorice and chronic fatigue syndrome. Author(s): Baschetti R. Source: N Z Med J. 1995 June 28; 108(1002): 259. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7617338&dopt=Abstract

Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·

Alternative Medicine Foundation, Inc.: http://www.herbmed.org/

·

AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats

·

Chinese Medicine: http://www.newcenturynutrition.com/

·

drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html

·

Family Village: http://www.familyvillage.wisc.edu/med_altn.htm

·

Google: http://directory.google.com/Top/Health/Alternative/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Alternative/

·

TPN.com: http://www.tnp.com/

·

Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/

·

WebMDÒHealth: http://my.webmd.com/drugs_and_herbs

·

WellNet: http://www.wellnet.ca/herbsa-c.htm

214 Chronic Fatigue Syndrome

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

The following is a specific Web list relating to chronic fatigue syndrome; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·

General Overview Bronchitis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Bronchitis.htm Chronic Fatigue Syndrome Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Chronic_Fatigue_ Syndrome.htm Chronic fatigue syndrome Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsLookups/Uses/ chronicfatiguesyndrome.html Chronic Fatigue Syndrome Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Chr onicFatigueSyndromecc.html Fatigue, Chronic Syndrome Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Chr onicFatigueSyndromecc.html

Researching Alternative Medicine 215

Immune Function Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Immune_Function .htm ·

Alternative Therapy Ayurveda Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 672,00.html Bach flower remedies Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 673,00.html Massage therapy Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 716,00.html Mind&Body Medicine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsModalities/Min dBodyMedicinecm.html Osteopathy Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 724,00.html

216 Chronic Fatigue Syndrome

·

Herbs and Supplements Adrenal complex Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 994,00.html Aloe Alternative names: Aloe vera L. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Alpha-lipoic acid Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10002,00.html Amino Acids Overview Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Amino_Acids.htm Asian Ginseng Alternative names: Panax ginseng Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Ginseng_Asian.htm Beta-carotene Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10103,00.html Carotenoids Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 763,00.html

Researching Alternative Medicine 217

Coenzyme Q Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 768,00.html Dehydroepiandrosterone (DHEA) Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/DHEA.htm DHEA Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10022,00.html Echinacea Alternative names: Echinacea purpurea, Echinacea angustifolia, Echinacea pallida Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Echinacea.htm Echinacea Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 775,00.html Eleuthero Alternative names: Eleutherococcus senticosus, Acanthopanax senticosus Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Eleuthero.htm GLA (Gamma-Linolenic Acid) Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000111.html

218 Chronic Fatigue Syndrome

Goldenseal Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 791,00.html Kava Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 798,00.html Licorice Alternative names: Glycyrrhiza glabra, Glycyrrhiza uralensis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Licorice.htm Licorice Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000144.html Licorice Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 801,00.html Melatonin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Melatonin.htm NADH Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/NADH.htm NADH Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10047,00.html

Researching Alternative Medicine 219

Pau d'arco Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 811,00.html SAMe (S-adenosylmethionine) Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 818,00.html Siberian ginseng Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 821,00.html St. John's wort Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 824,00.html Suma Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000239.html Symphytum Alternative names: Comfrey; Symphytum officinale L. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/

General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of

220 Chronic Fatigue Syndrome

general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative Medicine for Dummies by James Dillard (Author); Audio Cassette, Abridged edition (1998), Harper Audio; ISBN: 0694520659; http://www.amazon.com/exec/obidos/ASIN/0694520659/icongroupinterna ·

Complementary and Alternative Medicine Secrets by W. Kohatsu (Editor); Hardcover (2001), Hanley & Belfus; ISBN: 1560534400; http://www.amazon.com/exec/obidos/ASIN/1560534400/icongroupinterna

·

Dictionary of Alternative Medicine by J. C. Segen; Paperback-2nd edition (2001), Appleton & Lange; ISBN: 0838516211; http://www.amazon.com/exec/obidos/ASIN/0838516211/icongroupinterna

·

Eat, Drink, and Be Healthy: The Harvard Medical School Guide to Healthy Eating by Walter C. Willett, MD, et al; Hardcover - 352 pages (2001), Simon & Schuster; ISBN: 0684863375; http://www.amazon.com/exec/obidos/ASIN/0684863375/icongroupinterna

· Encyclopedia of Natural Medicine, Revised 2nd Edition by Michael T. Murray, Joseph E. Pizzorno; Paperback - 960 pages, 2nd Rev edition (1997), Prima Publishing; ISBN: 0761511571; http://www.amazon.com/exec/obidos/ASIN/0761511571/icongroupinterna ·

Integrative Medicine: An Introduction to the Art & Science of Healing by Andrew Weil (Author); Audio Cassette, Unabridged edition (2001), Sounds True; ISBN: 1564558541; http://www.amazon.com/exec/obidos/ASIN/1564558541/icongroupinterna

·

Natural Alternatives to Antibiotics by John McKenna; Paperback - 176 pages (November 1998), Avery Penguin Putnam; ISBN: 0895298392; http://www.amazon.com/exec/obidos/ASIN/0895298392/icongroupinterna

·

New Encyclopedia of Herbs & Their Uses by Deni Bown; Hardcover - 448 pages, Revised edition (2001), DK Publishing; ISBN: 078948031X; http://www.amazon.com/exec/obidos/ASIN/078948031X/icongroupinterna

· Textbook of Complementary and Alternative Medicine by Wayne B. Jonas; Hardcover (2003), Lippincott, Williams & Wilkins; ISBN: 0683044370; http://www.amazon.com/exec/obidos/ASIN/0683044370/icongroupinterna

Researching Alternative Medicine 221

For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218

Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Bronchitis: Inflammation of one or more bronchi. [EU] Carotene: The general name for a group of pigments found in green, yellow, and leafy vegetables, and yellow fruits. The pigments are fat-soluble, unsaturated aliphatic hydrocarbons functioning as provitamins and are converted to vitamin A through enzymatic processes in the intestinal wall. [NIH]

Glycyrrhiza: A genus of leguminous herbs or shrubs whose roots yield glycyrrhetinic acid and its derivatives, carbenoxolone for example. Licorice toxicity is manifested as hypokalemia, low blood potassium. Licorice is used as flavoring and aromatic in pharmaceuticals and as candy. [NIH] Kava: Dried rhizome and roots of Piper methysticum, a shrub native to Oceania and known for its anti-anxiety and sedative properties. Heavy usage results in some adverse effects. It contains alkaloids, lactones, kawain, methysticin, mucilage, STARCH, and yangonin. Kava is also the name of the pungent beverage prepared from the plant's roots. [NIH]

Researching Nutrition 223

APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with chronic fatigue syndrome. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with chronic fatigue syndrome may be given different recommendations. Some recommendations may be directly related to chronic fatigue syndrome, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of chronic fatigue syndrome. We will then show you how to find studies dedicated specifically to nutrition and chronic fatigue syndrome.

224 Chronic Fatigue Syndrome

Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·

Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.

·

Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.

·

Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.

·

Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.

Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·

Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.

·

Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.

·

Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from

Researching Nutrition 225

nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·

Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains

·

Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.

·

Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.

·

Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.

·

Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.

·

Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.

·

Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.

·

Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.

It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·

Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.

226 Chronic Fatigue Syndrome

·

Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.

·

Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.

·

Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.

·

Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.

·

Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.

·

Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.

·

Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.

·

Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.

The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:49 ·

49

DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs. Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.

Researching Nutrition 227

·

DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.

·

RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”

·

RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge.

What Are Dietary Supplements?50 Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”51 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.52 The ODS notes that considerable research on the This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 51 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: [email protected]. 52 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, 50

228 Chronic Fatigue Syndrome

effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: [email protected]

Finding Studies on Chronic Fatigue Syndrome The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.53 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html.

metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 53 Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.

Researching Nutrition 229

After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “chronic fatigue syndrome” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following is a typical result when searching for recently indexed consumer information on chronic fatigue syndrome: ·

Chronic fatigue syndrome (ME) Source: Stockdale, T Nutr-Health. 1993; 9(1): 59-60 0260-1060

·

Seeking a dietary cure for Chronic Fatigue Syndrome. Source: Tufts-Univ-Diet-Nutr-Lett. New York, N.Y. : The Letter. October 1989. volume 7 (8) page 7-8. 0747-4105

The following information is typical of that found when using the “Full IBIDS Database” when searching using “chronic fatigue syndrome” (or a synonym): ·

A multidimensional treatment plan for chronic fatigue syndrome. Author(s): Glasgow Homoeopathic Hospital, 1000 Great Western Road, Glasgow G12 0NR (United Kingdom) Source: Gibson, S.L.M. Gibson, R.G. Journal-of-Nutritional-andEnvironmental-Medicine (United Kingdom). (1999). volume 9(1) page 4754. human diseases mankind diet treatment wheats gluten therapy hypersensitivity homeopathy diet Summary: maladie de l' homme genre humain traitement par regime alimentaire ble gluten therapeutique reaction allergique homeopathie regime alimentaire

·

Vitamin B status in patients with chronic fatigue syndrome. Author(s): Department of Clinical Biochemistry, King' s College School of Medicine, London SE5 0PJ (United Kingdom) Source: Heap, L.C. Peters, T.J. Wessely, S. Journal-of-the-Royal-Societyof-Medicine (United Kingdom). (1999). volume 92(4) page 183-185. mankind pyridoxine riboflavin thiamin human diseases aspartate aminotransferase glutathione reductase transferases enzymic activity nutritional status vitamins b

230 Chronic Fatigue Syndrome

Summary: genre humain pyridoxine riboflavine thiamine maladie de l' homme aspartate aminotransferase glutathion reductase transferase activite enzymatique etat nutritionnel complexe vitaminique b Additional physician-oriented references include: ·

A preliminary study of dehydroepiandrosterone response to low-dose ACTH in chronic fatigue syndrome and in healthy subjects. Author(s): Department of Psychiatry, Trinity College Medical School, St. James' Hospital, 8, Dublin, Ireland. Source: Scott, L V Svec, F Dinan, T Psychiatry-Res. 2000 December 4; 97(1): 21-8 0165-1781

·

Abnormalities in essential amino acids in patients with chronic fatigue syndrome. Source: Eaton, K.K. Hunnisett, A. J-Nutr-Med. Abingdon, UK: Carfax Pub. Co. 1991. volume 2 (4) page 369-375. 0955-6664

·

Acylcarnitine deficiency in chronic fatigue syndrome. Author(s): Osaka University Medical School, Japan. Source: Kuratsune, H Yamaguti, K Takahashi, M Misaki, H Tagawa, S Kitani, T Clin-Infect-Dis. 1994 January; 18 Suppl 1S62-7 1058-4838

·

Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome. Author(s): Chronic Fatigue Syndrome Center, Department of Research, Mercy Hospital Chicago, Ill 60616, USA. Source: Plioplys, A V Plioplys, S Neuropsychobiology. 1997; 35(1): 16-23 0302-282X

·

Amma therapy: a holistic approach to chronic fatigue syndrome. Source: Young, A J-Holist-Nurs. 1993 June; 11(2): 172-82 0898-0101

·

Amplified amplitudes of circadian rhythms and nighttime hypotension in patients with chronic fatigue syndrome: improvement by inopamil but not by melatonin. Author(s): Department of Medicine, Merwede Hospital Dordrecht, The Netherlands. Source: van de Luit, L van der Meulen, J Cleophas, T J Zwinderman, A H Angiology. 1998 November; 49(11): 903-8 0003-3197

·

Antioxidant status and lipoprotein peroxidation in chronic fatigue syndrome. Author(s): University Hospital, University of Antwerp, Belgium. [email protected] Source: Manuel y Keenoy, B Moorkens, G Vertommen, J De Leeuw, I Life-Sci. 2001 March 16; 68(17): 2037-49 0024-3205

Researching Nutrition 231

·

Assessment of plasma fatty acids and sterols in sudden- and gradualonset chronic fatigue syndrome patients. Source: McGregor, N.R. Dunstan, R.H. Donohoe, M. Roberts, T.K. Butt, H.L. Watkins, J.A. Murdoch, R.N. Taylor, W.G. J-nutr-environ-med. Abingdon, U.K. : Carfax Publishing Company. March 2000. volume10 (1) page 13-23. 1359-0847

·

Bone density and body composition in young women with chronic fatigue syndrome. Author(s): Department of Diabetes, Endocrinology, and Metabolic Medicine, Royal North Shore Hospital, St. Leonards, New South Wales, Australia. [email protected] Source: Hoskin, L Clifton Bligh, P Hansen, R Fulcher, G Gates, F Ann-NY-Acad-Sci. 2000 May; 904625-7 0077-8923

·

Changes in plasma lipid homeostasis observed in chronic fatigue syndrome patients. Source: Dunstan, R.H. McGregor, N.R. Watkins, J.A. Donohoe, M. Roberts, T.K. Butt, H.L. Murdoch, R.N. Taylor, W.G. J-nutr-environ-med. Abingdon, U.K. : Carfax Publishing Company. December 1999. volume 9 (4) page 267-279. 1359-0847

·

Chronic fatigue syndrome (ME) Source: Stockdale, T Nutr-Health. 1993; 9(1): 59-60 0260-1060

·

Chronic fatigue syndrome and chronic primary magnesium deficiency (CFS and CPMD). Author(s): International Society for the Development of Research on Magnesium, Neuilly/Seine, France. Source: Durlach, J Magnes-Res. 1992 March; 5(1): 68 0953-1424

·

Chronic fatigue syndrome and dieting disorders: diagnosis and management problems. Author(s): Department of Psychological Medicine, University of Sydney, New South Wales, Australia. Source: Griffiths, R A Beumont, P J Moore, G M Touyz, S W Aust-N-Z-JPsychiatry. 1996 December; 30(6): 834-8 0004-8674

·

Chronic fatigue syndrome and fibromyalgia. Dilemmas in diagnosis and clinical management. Author(s): Lilly Research Laboratories, Indianapolis, Indiana, USA. Source: Demitrack, M A Psychiatr-Clin-North-Am. 1998 September; 21(3): 671-92, viii 0193-953X

·

Chronic fatigue syndrome and functional hypoadrenia--fighting vainly the old ennui. Author(s): Department of Diabetes and Endocrinology, City Hospital, Nottingham, UK.

232 Chronic Fatigue Syndrome

Source: Jeffcoate, W J Lancet. 1999 February 6; 353(9151): 424-5 0140-6736 ·

Chronic fatigue syndrome and nickel allergy. Author(s): Department of Dermatology, Huddinge University Hospital, Sweden. Source: Marcusson, J A Lindh, G Evengard, B Contact-Dermatitis. 1999 May; 40(5): 269-72 0105-1873

·

Chronic fatigue syndrome. Author(s): University of Michigan Medical School, Ann Arbor. Source: Demitrack, M A Engleberg, N C Curr-Ther-Endocrinol-Metab. 1994; 5135-42 0831-652X

·

Chronic fatigue syndrome. 2: Treatment and future research. Author(s): Department of Psychiatry, Beth Israel Hospital, Harvard Medical School in Boston, USA. Source: Kantrowitz, F G Farrar, D J Locke, S E Behav-Med. 1995 Spring; 21(1): 17-24 0896-4289

·

Chronic fatigue syndrome. A fresh look at an old problem. Author(s): Department of Family Medicine, University of Western Ontario, London. Source: McSherry, J Can-Fam-Physician. 1993 February; 39336-40 0008350X

·

Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome. Source: Cater, R E Med-Hypotheses. 1995 June; 44(6): 507-15 0306-9877

Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·

healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0

·

The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov

·

The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov

Researching Nutrition 233

·

The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/

·

The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/

·

Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/

·

Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/

·

Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/

Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·

AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats

·

Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html

·

Google: http://directory.google.com/Top/Health/Nutrition/

·

Healthnotes: http://www.thedacare.org/healthnotes/

·

Open Directory Project: http://dmoz.org/Health/Nutrition/

·

Yahoo.com: http://dir.yahoo.com/Health/Nutrition/

·

WebMDÒHealth: http://my.webmd.com/nutrition

·

WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html

The following is a specific Web list relating to chronic fatigue syndrome; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:

234 Chronic Fatigue Syndrome

·

Vitamins Pantothenic acid Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 882,00.html Vitamin B Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10067,00.html Vitamin B1 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B1.htm Vitamin B12 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B12.htm Vitamin B2 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B2.htm Vitamin B6 Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B6.htm Vitamin C Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 904,00.html

Researching Nutrition 235

·

Minerals Carnitine Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10012,00.html Carnitine (L-Carnitine) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/C arnitineLCarnitinecs.html L-Carnitine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Carnitine.htm L-Carnitine Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/C arnitineLCarnitinecs.html Magnesium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Magnesium.htm Magnesium Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 890,00.html

236 Chronic Fatigue Syndrome

·

Food and Diet Low-Salt Diet Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Diet/Low_Salt_Diet.htm

Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Amantadine: An antiviral that is used in the prophylactic or symptomatic treatment of influenza A. It is also used as an antiparkinsonian agent, to treat extrapyramidal reactions, and for postherpetic neuralgia. The mechanisms of its effects in movement disorders are not well understood but probably reflect an increase in synthesis and release of dopamine, with perhaps some inhibition of dopamine uptake. [NIH] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dermatitis: Inflammation of the skin. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Gluten: The protein of wheat and other grains which gives to the dough its

Researching Nutrition 237

tough elastic character. [EU] Hypersensitivity: A state of altered reactivity in which the body reacts with an exaggerated immune response to a foreign substance. Hypersensitivity reactions are classified as immediate or delayed, types I and IV, respectively, in the Gell and Coombs classification (q.v.) of immune responses. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-lowdensity lipoproteins and chylomicrons. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nickel: A trace element with the atomic symbol Ni, atomic number 28, and atomic weight 58.69. It is a cofactor of the enzyme urease. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH]

Finding Medical Libraries 239

APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.

Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.54

54

Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.

240 Chronic Fatigue Syndrome

Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.

Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):55 ·

Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/

·

Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM

·

Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm

·

California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html

·

California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html

·

California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html

·

California: Gateway Health Library (Sutter Gould Medical Foundation)

·

California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/

55

Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.

Finding Medical Libraries 241

·

California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp

·

California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html

·

California: San José PlaneTree Health Library, http://planetreesanjose.org/

·

California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html

·

California: University of California, Davis. Health Sciences Libraries

·

California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html

·

California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/

·

Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm

·

Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/

·

Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/

·

Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml

·

Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm

·

Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html

·

Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm

·

Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp

·

Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/

242 Chronic Fatigue Syndrome

·

Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm

·

Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html

·

Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/

·

Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm

·

Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/

·

Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/

·

Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/

·

Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm

·

Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html

·

Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm

·

Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/

·

Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library

·

Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10

·

Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html

·

Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html

·

Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml

Finding Medical Libraries 243

·

Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp

·

Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/

·

Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html

·

Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm

·

Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp

·

Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/

·

Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html

·

Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/

·

Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm

·

Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/

·

Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html

·

Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm

·

Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html

·

Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

244 Chronic Fatigue Syndrome

·

National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html

·

National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/

·

National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/

·

Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm

·

New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·

New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm

·

New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm

·

New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/

·

New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html

·

New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/

·

New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html

·

New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/

·

Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm

·

Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 245

·

Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/

·

Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/

·

Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml

·

Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html

·

Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html

·

Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml

·

Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp

·

Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm

·

Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/

·

South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·

Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/

·

Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html

·

Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/

·

Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/

Your Rights and Insurance 247

APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with chronic fatigue syndrome faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.

Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.56

Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·

Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider

56Adapted

from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.

248 Chronic Fatigue Syndrome

network composition, the procedures that govern access to specialists and emergency services, and care management information. ·

Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.

·

Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.

·

Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding. Choice of Providers and Plans

Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·

Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.

·

Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services.

·

Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.

Your Rights and Insurance 249

·

Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care.

·

Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.

Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part. Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·

Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.

·

Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.

·

Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.

·

Discuss all current treatments a consumer may be undergoing.

·

Discuss all risks, nontreatment.

benefits,

and

consequences

to

treatment

or

250 Chronic Fatigue Syndrome

·

Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.

·

Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.

·

Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.

Health plans, health providers, and healthcare facilities should: ·

Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.

·

Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options.

·

Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.

Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·

Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

·

Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

Your Rights and Insurance 251

Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records.

Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.57

Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”58 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·

Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.

·

Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.

·

Disclose relevant information and clearly communicate wants and needs.

To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 58 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 57

252 Chronic Fatigue Syndrome

·

Use your health insurance plan’s internal complaint and appeal processes to address your concerns.

·

Avoid knowingly spreading disease.

·

Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.

·

Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community.

·

Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.

·

Show respect for other patients and health workers.

·

Make a good-faith effort to meet financial obligations.

·

Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.

Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.59 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.60 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 60 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 59

Your Rights and Insurance 253

face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits. 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and

254 Chronic Fatigue Syndrome

requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.

Your Rights and Insurance 255

Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful contact information on how to find more in-depth information about Medicaid.61 Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·

You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.

·

You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.

·

You or your spouse had Medicare-covered government employment.

If you are under 65, you can get Part A without having to pay premiums if: ·

You have received Social Security or Railroad Retirement Board disability benefit for 24 months.

·

You are a kidney dialysis or kidney transplant patient.

Medicare has two parts: ·

Part A (Hospital Insurance). Most people do not have to pay for Part A.

·

Part B (Medical Insurance). Most people pay monthly for Part B.

This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.

61

256 Chronic Fatigue Syndrome

Part A (Hospital Insurance) Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare. Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above

Your Rights and Insurance 257

payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans. Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·

Part A (Hospital Insurance),

·

Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and

·

A monthly income that is below certain limits.

For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.

258 Chronic Fatigue Syndrome

NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.62 NORD programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.

Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:63 ·

Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html

·

Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html

·

HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html

·

Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html

·

Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html

·

Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html

·

Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html

Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30. 63 You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 62

Your Rights and Insurance 259

·

Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html

·

Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html

Vocabulary Builder Photophobia: Abnormal visual intolerance of light. [EU] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH]

Online Glossaries 261

ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·

ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html

·

MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp

·

Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/

·

Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

·

On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/

·

Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

·

Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to chronic fatigue syndrome and keep them on file. The NIH, in particular, suggests that patients with chronic fatigue syndrome visit the following Web sites in the ADAM Medical Encyclopedia:

262 Chronic Fatigue Syndrome

·

Basic Guidelines for Chronic Fatigue Syndrome CFS Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001244.htm Chronic fatigue syndrome Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001244.htm COPD Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000091.htm SLE Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm TB Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000077.htm

·

Signs & Symptoms for Chronic Fatigue Syndrome Anxiety Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm Confusion Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003205.htm Depression Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003213.htm Fatigue Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm

Online Glossaries 263

Fever Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm Forgetfulness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003257.htm Headaches Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003024.htm Hypersomnia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003208.htm Insomnia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003210.htm Joint pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Joint swelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003262.htm Lymph node swelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003097.htm Muscle Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm Muscle aches Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003178.htm

264 Chronic Fatigue Syndrome

Muscle weakness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003174.htm Myalgia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003178.htm Photophobia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003041.htm Sleep disturbances Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003210.htm Sore throat Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003053.htm Stress Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm Swelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm Tiredness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Weakness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003174.htm Weariness Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm

Online Glossaries 265

·

Diagnostics and Tests for Chronic Fatigue Syndrome Albumin Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003480.htm Alkaline phosphatase Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003470.htm ALT Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003473.htm ANA Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003535.htm BUN Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm CBC Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003642.htm Chest X-ray Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003804.htm Creatinine Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm ESR Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003638.htm MRI Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003335.htm

266 Chronic Fatigue Syndrome

Purified protein derivative Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003839.htm RF Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003548.htm Rheumatoid factor Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003548.htm Serology Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003511.htm Total protein Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003483.htm TSH Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003684.htm Urinalysis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003579.htm VDRL Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003515.htm X-ray Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003337.htm ·

Background Topics for Chronic Fatigue Syndrome Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm

Online Glossaries 267

Endocrine Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002351.htm Exercise Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001941.htm Immune response Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000821.htm Physical examination Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002274.htm Relieved by Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002288.htm Systemic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002294.htm

Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·

Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical

·

MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html

·

Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/

·

Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine

Glossary 269

CHRONIC FATIGUE SYNDROME GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Accommodation: distances. [EU]

Adjustment, especially that of the eye for various

Acetylcholinesterase: An enzyme that catalyzes the hydrolysis of acetylcholine to choline and acetate. In the CNS, this enzyme plays a role in the function of peripheral neuromuscular junctions. EC 3.1.1.7. [NIH] Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] ACTH: Adrenocorticotropic hormone. [EU] Acyclovir: Functional analog of the nucleoside guanosine. It acts as an antimetabolite, especially in viruses. It is used as an antiviral agent, especially in herpes infections. [NIH] Adenine: A purine base and a fundamental unit of adenine nucleotides. [NIH] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a neurotransmitter. [NIH] Adverse: Harmful. [EU] Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Alanine: A non-essential amino acid that occurs in high levels in its free state in plasma. It is produced from pyruvate by transamination. It is involved in sugar and acid metabolism, increases immunity, and provides energy for muscle tissue, brain, and the central nervous system. [NIH] Amantadine: An antiviral that is used in the prophylactic or symptomatic treatment of influenza A. It is also used as an antiparkinsonian agent, to treat extrapyramidal reactions, and for postherpetic neuralgia. The mechanisms of its effects in movement disorders are not well understood but probably reflect an increase in synthesis and release of dopamine, with perhaps some inhibition of dopamine uptake. [NIH]

270 Chronic Fatigue Syndrome

Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Amnesia: Lack or loss of memory; inability to remember past experiences. [EU]

Anabolic: Relating to, characterized by, or promoting anabolism. [EU] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anaphylactic: Pertaining to anaphylaxis. [EU] Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Androgens: A class of sex hormones associated with the development and maintenance of the secondary male sex characteristics, sperm induction, and sexual differentiation. In addition to increasing virility and libido, they also increase nitrogen and water retention and stimulate skeletal growth. [NIH] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Anorexia: Lack or loss of the appetite for food. [EU] Antecedent: Existing or occurring before in time or order often with consequential effects. [EU] Anthropology: The science devoted to the comparative study of man. [NIH] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Anticholinergic: An agent that blocks the parasympathetic nerves. Called also parasympatholytic. [EU] Antidepressant: An agent that stimulates the mood of a depressed patient, including tricyclic antidepressants and monoamine oxidase inhibitors. [EU]

Glossary 271

Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Antiproliferative: Counteracting a process of proliferation. [EU] Antiviral: Destroying viruses or suppressing their replication. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Arginine: An essential amino acid that is physiologically active in the Lform. [NIH] Arteritis: Inflammation of an artery. [NIH] Arthralgia: Pain in a joint. [EU] Aseptic: Free from infection or septic material; sterile. [EU] Aspartame: Flavoring agent sweeter than sugar, metabolized as phenylalanine and aspartic acid. [NIH] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Astemizole: A long-acting, non-sedative antihistaminic used in the treatment of seasonal allergic rhinitis, asthma, allergic conjunctivitis, and chronic idiopathic urticaria. The drug is well tolerated and has no

272 Chronic Fatigue Syndrome

anticholinergic side effects. [NIH] Atenolol: A cardioselective beta-adrenergic blocker possessing properties and potency similar to propranolol, but without a negative inotropic effect. [NIH]

Atrophy: A wasting away; a diminution in the size of a cell, tissue, organ, or part. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Autonomic: Self-controlling; functionally independent. [EU] Basophils: Granular leukocytes characterized by a relatively pale-staining, lobate nucleus and cytoplasm containing coarse dark-staining granules of variable size and stainable by basic dyes. [NIH] Benzodiazepines: A two-ring heterocyclic compound consisting of a benzene ring fused to a diazepine ring. Permitted is any degree of hydrogenation, any substituents and any H-isomer. [NIH] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Bilirubin: A bile pigment that is a degradation product of HEME. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Blindness: The inability to see or the loss or absence of perception of visual stimuli. This condition may be the result of eye diseases; optic nerve diseases; optic chiasm diseases; or brain diseases affecting the visual pathways or occipital lobe. [NIH] Bupropion: A unicyclic, aminoketone antidepressant. The mechanism of its therapeutic actions is not well understood, but it does appear to block dopamine uptake. The hydrochloride is available as an aid to smoking cessation treatment. [NIH] Buspirone: An anxiolytic agent and a serotonin receptor agonist belonging to the azaspirodecanedione class of compounds. Its structure is unrelated to those of the benzodiazepines, but it has an efficacy comparable to diazepam. [NIH]

Candidiasis: Infection with a fungus of the genus Candida. It is usually a superficial infection of the moist cutaneous areas of the body, and is generally caused by C. albicans; it most commonly involves the skin

Glossary 273

(dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Cardiopulmonary: Pertaining to the heart and lungs. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Carnitine: Constituent of striated muscle and liver. It is used therapeutically to stimulate gastric and pancreatic secretions and in the treatment of hyperlipoproteinemias. [NIH] Carotene: The general name for a group of pigments found in green, yellow, and leafy vegetables, and yellow fruits. The pigments are fat-soluble, unsaturated aliphatic hydrocarbons functioning as provitamins and are converted to vitamin A through enzymatic processes in the intestinal wall. [NIH]

Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU]

Causal: Pertaining to a cause; directed against a cause. [EU] Cervical: Pertaining to the neck, or to the neck of any organ or structure. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Cholangitis: Inflammation of a bile duct. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chronic: Persisting over a long period of time. [EU] Cirrhosis: Liver disease characterized pathologically by loss of the normal microscopic lobular architecture, with fibrosis and nodular regeneration. The term is sometimes used to refer to chronic interstitial inflammation of any organ. [EU]

274 Chronic Fatigue Syndrome

Clonazepam: An anticonvulsant used for several types of seizures, including myotonic or atonic seizures, photosensitive epilepsy, and absence seizures, although tolerance may develop. It is seldom effective in generalized tonic-clonic or partial seizures. The mechanism of action appears to involve the enhancement of gaba receptor responses. [NIH] Coenzyme: An organic nonprotein molecule, frequently a phosphorylated derivative of a water-soluble vitamin, that binds with the protein molecule (apoenzyme) to form the active enzyme (holoenzyme). [EU] Cognition: Intellectual or mental process whereby an organism becomes aware of or obtains knowledge. [NIH] Colonoscopy: Endoscopic examination, therapy or surgery of the luminal surface of the colon. [NIH] Comorbidity: The presence of co-existing or additional diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study. Comorbidity may affect the ability of affected individuals to function and also their survival; it may be used as a prognostic indicator for length of hospital stay, cost factors, and outcome or survival. [NIH] Concomitant: Accompanying; accessory; joined with another. [EU] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cranial: Pertaining to the cranium, or to the anterior (in animals) or superior (in humans) end of the body. [EU] Creatine: An amino acid that occurs in vertebrate tissues and in urine. In muscle tissue, creatine generally occurs as phosphocreatine. Creatine is excreted as creatinine in the urine. [NIH] Cystitis: Inflammation of the urinary bladder. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a

Glossary 275

paracrine or autocrine rather than endocrine manner. [NIH] Cytomegalovirus: A genus of the family herpesviridae, subfamily betaherpesvirinae, infecting the salivary glands, liver, spleen, lungs, eyes, and other organs, in which they produce characteristically enlarged cells with intranuclear inclusions. Infection with Cytomegalovirus is also seen as an opportunistic infection in AIDS. [NIH] Defecation: The normal process of elimination of fecal material from the rectum. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is usually progressive, and initially spares the level of consciousness. [NIH] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Dermatitis: Inflammation of the skin. [EU] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Desipramine: A tricyclic dibenzazepine compound that potentiates neurotransmission. Desipramine selectively blocks reuptake of norepinephrine from the neural synapse, and also appears to impair serotonin transport. This compound also possesses minor anticholingeric activity, through its affinity to muscarinic receptors. [NIH] Detoxification: Treatment designed to free an addict from his drug habit. [EU]

Diaphragm: The musculofibrous partition that separates the thoracic cavity from the abdominal cavity. Contraction of the diaphragm increases the volume of the thoracic cavity aiding inspiration. [NIH] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dicyclomine: A muscarinic antagonist used as an antispasmodic and in urinary incontinence. It has little effect on glandular secretion or the cardiovascular system. It does have some local anesthetic properties and is used in gastrointestinal, biliary, and urinary tract spasms. [NIH] Diltiazem: A benzothiazepine derivative with vasodilating action due to its

276 Chronic Fatigue Syndrome

antagonism of the actions of the calcium ion in membrane functions. It is also teratogenic. [NIH] Distention: The state of being distended or enlarged; the act of distending. [EU]

Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Dysphagia: Difficulty in swallowing. [EU] Dyspnea: Difficult or labored breathing. [NIH] Earache: Pain in the ear. [NIH] Echinacea: A genus of perennial herbs used topically and internally. It contains echinacoside, glycosides, inulin, isobutyl amides, resin, and sesquiterpenes. [NIH] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Empiric: Empirical; depending upon experience or observation alone, without using scientific method or theory. [EU] Encephalitis: Inflammation of the brain. [EU] Encephalomyelitis: A general term indicating inflammation of the brain and spinal cord, often used to indicate an infectious process, but also applicable to a variety of autoimmune and toxic-metabolic conditions. There is significant overlap regarding the usage of this term and encephalitis in the literature. [NIH] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Endoscopy: Visual inspection of any cavity of the body by means of an endoscope. [EU] Enema: A clyster or injection; a liquid injected or to be injected into the rectum. [EU] Epidemic: Occurring suddenly in numbers clearly in excess of normal expectancy; said especially of infectious diseases but applied also to any disease, injury, or other health-related event occurring in such outbreaks. [EU] Epinephrine: The active sympathomimetic hormone from the adrenal medulla in most species. It stimulates both the alpha- and beta- adrenergic systems, causes systemic vasoconstriction and gastrointestinal relaxation, stimulates the heart, and dilates bronchi and cerebral vessels. It is used in asthma and cardiac failure and to delay absorption of local anesthetics. [NIH] Equisetum: A genus of plants closely related to ferns. Some species have

Glossary 277

medicinal use and some are poisonous. [NIH] Erythrocytes: Red blood cells. Mature erythrocytes are non-nucleated, biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Erythropoietin: Glycoprotein hormone, secreted chiefly by the kidney in the adult and the liver in the fetus, that acts on erythroid stem cells of the bone marrow to stimulate proliferation and differentiation. [NIH] Estradiol: The most potent mammalian estrogenic hormone. It is produced in the ovary, placenta, testis, and possibly the adrenal cortex. [NIH] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Febrile: Pertaining to or characterized by fever. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Ficoll: A sucrose polymer of high molecular weight. [NIH] Filtration: The passage of a liquid through a filter, accomplished by gravity, pressure, or vacuum (suction). [EU] Flexion: In gynaecology, a displacement of the uterus in which the organ is bent so far forward or backward that an acute angle forms between the fundus and the cervix. [EU] Fludrocortisone: activity. [NIH]

A synthetic mineralocorticoid with anti-inflammatory

Fluorescence: The property of emitting radiation while being irradiated. The radiation emitted is usually of longer wavelength than that incident or absorbed, e.g., a substance can be irradiated with invisible radiation and emit visible light. X-ray fluorescence is used in diagnosis. [NIH] Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] FSH: A gonadotropic hormone found in the pituitary tissues of mammals. It regulates the metabolic activity of ovarian granulosa cells and testicular Sertoli cells, induces maturation of Graafian follicles in the ovary, and promotes the development of the germinal cells in the testis. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Germanium: A rare metal element with a blue-gray appearance and atomic symbol Ge, atomic number 32, and atomic weight 72.59. [NIH]

278 Chronic Fatigue Syndrome

Ginseng: An araliaceous genus of plants that contains a number of pharmacologically active agents used as stimulants, sedatives, and tonics, especially in traditional medicine. [NIH] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Glycyrrhiza: A genus of leguminous herbs or shrubs whose roots yield glycyrrhetinic acid and its derivatives, carbenoxolone for example. Licorice toxicity is manifested as hypokalemia, low blood potassium. Licorice is used as flavoring and aromatic in pharmaceuticals and as candy. [NIH] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Hematology: A subspecialty of internal medicine concerned with morphology, physiology, and pathology of the blood and blood-forming tissues. [NIH] Hepatitis: Inflammation of the liver. [EU] Homeostasis: A tendency to stability in the normal body states (internal environment) of the organism. It is achieved by a system of control mechanisms activated by negative feedback; e.g. a high level of carbon dioxide in extracellular fluid triggers increased pulmonary ventilation, which in turn causes a decrease in carbon dioxide concentration. [EU] Homogeneous: Consisting of or composed of similar elements or ingredients; of a uniform quality throughout. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have

Glossary 279

similar effects. [NIH] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hydroxyurea: An antineoplastic agent that inhibits DNA synthesis through the inhibition of ribonucleoside diphosphate reductase. [NIH] Hyperalgesia: Excessive sensitiveness or sensibility to pain. [EU] Hypersensitivity: A state of altered reactivity in which the body reacts with an exaggerated immune response to a foreign substance. Hypersensitivity reactions are classified as immediate or delayed, types I and IV, respectively, in the Gell and Coombs classification (q.v.) of immune responses. [EU] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Hyperthyroidism: 1. excessive functional activity of the thyroid gland. 2. the abnormal condition resulting from hyperthyroidism marked by increased metabolic rate, enlargement of the thyroid gland, rapid heart rate, high blood pressure, and various secondary symptoms. [EU] Hypoplasia: Incomplete development or underdevelopment of an organ or tissue. [EU] Hypotension: Abnormally low blood pressure; seen in shock but not necessarily indicative of it. [EU] Hypothalamus: Ventral part of the diencephalon extending from the region of the optic chiasm to the caudal border of the mammillary bodies and forming the inferior and lateral walls of the third ventricle. [NIH] Hypothyroidism: Deficiency of thyroid activity. In adults, it is most common in women and is characterized by decrease in basal metabolic rate, tiredness and lethargy, sensitivity to cold, and menstrual disturbances. If untreated, it progresses to full-blown myxoedema. In infants, severe hypothyroidism leads to cretinism. In juveniles, the manifestations are intermediate, with less severe mental and developmental retardation and only mild symptoms of the adult form. When due to pituitary deficiency of thyrotropin secretion it is called secondary hypothyroidism. [EU] Hypoxia: Reduction of oxygen supply to tissue below physiological levels despite adequate perfusion of the tissue by blood. [EU] Iatrogenic: Resulting from the activity of physicians. Originally applied to disorders induced in the patient by autosuggestion based on the physician's

280 Chronic Fatigue Syndrome

examination, manner, or discussion, the term is now applied to any adverse condition in a patient occurring as the result of treatment by a physician or surgeon, especially to infections acquired by the patient during the course of treatment. [EU] Ibuprofen: A nonsteroidal anti-inflammatory agent with analgesic properties used in the therapy of rheumatism and arthritis. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Immunoassay: Immunochemical assay or detection of a substance by serologic or immunologic methods. Usually the substance being studied serves as antigen both in antibody production and in measurement of antibody by the test substance. [NIH] Immunotherapy: Manipulation of the host's immune system in treatment of disease. It includes both active and passive immunization as well as immunosuppressive therapy to prevent graft rejection. [NIH] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Insomnia: Inability to sleep; abnormal wakefulness. [EU] Interferons: Proteins secreted by vertebrate cells in response to a wide variety of inducers. They confer resistance against many different viruses, inhibit proliferation of normal and malignant cells, impede multiplication of intracellular parasites, enhance macrophage and granulocyte phagocytosis, augment natural killer cell activity, and show several other immunomodulatory functions. [NIH] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]

Ischemia: Deficiency of blood in a part, due to functional constriction or actual obstruction of a blood vessel. [EU] Kava: Dried rhizome and roots of Piper methysticum, a shrub native to Oceania and known for its anti-anxiety and sedative properties. Heavy usage

Glossary 281

results in some adverse effects. It contains alkaloids, lactones, kawain, methysticin, mucilage, starch, and yangonin. Kava is also the name of the pungent beverage prepared from the plant's roots. [NIH] Ketoacidosis: Acidosis accompanied by the accumulation of ketone bodies (ketosis) in the body tissues and fluids, as in diabetic acidosis. [EU] Labyrinth: The internal ear; the essential part of the organ of hearing. It consists of an osseous and a membranous portion. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] LH: A small glycoprotein hormone secreted by the anterior pituitary. LH plays an important role in controlling ovulation and in controlling secretion of hormones by the ovaries and testes. [NIH] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-lowdensity lipoproteins and chylomicrons. [EU] Loratadine: A second-generation histamine H1 receptor antagonist used in the treatment of allergic rhinitis and urticaria. Unlike most classical antihistamines it lacks central nervous system depressing effects such as drowsiness. [NIH] Lorazepam: An anti-anxiety agent with few side effects. It also has hypnotic, anticonvulsant, and considerable sedative properties and has been proposed as a preanesthetic agent. [NIH] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]

Lymphokines: Soluble protein factors generated by activated lymphocytes that affect other cells, primarily those involved in cellular immunity. [NIH] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malaise: A vague feeling of bodily discomfort. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Manifest:

Being the part or aspect of a phenomenon that is directly

282 Chronic Fatigue Syndrome

observable : concretely expressed in behaviour. [EU] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Mental: Pertaining to the mind; psychic. 2. (L. mentum chin) pertaining to the chin. [EU] Methionine: A sulfur containing essential amino acid that is important in many body functions. It is a chelating agent for heavy metals. [NIH] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Midodrine: An ethanolamine derivative that is an adrenergic alpha agonist. It is used as a vasoconstrictor agent in the treatment of hypotension. [NIH] Modulator: A specific inductor that brings out characteristics peculiar to a definite region. [EU] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Musculature: The muscular apparatus of the body, or of any part of it. [EU] Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]

Myocarditis: Inflammation of the myocardium; inflammation of the muscular walls of the heart. [EU]

Glossary 283

Myoglobin: A conjugated protein which is the oxygen-transporting pigment of muscle. It is made up of one globin polypeptide chain and one heme group. [NIH] Naloxone: A specific opiate antagonist that has no agonist activity. It is a competitive antagonist at mu, delta, and kappa opioid receptors. [NIH] Naltrexone: Derivative of noroxymorphone that is the N-cyclopropylmethyl congener of naloxone. It is a narcotic antagonist that is effective orally, longer lasting and more potent than naloxone, and has been proposed for the treatment of heroin addiction. The FDA has approved naltrexone for the treatment of alcohol dependence. [NIH] Naproxen: An anti-inflammatory agent with analgesic and antipyretic properties. Both the acid and its sodium salt are used in the treatment of rheumatoid arthritis and other rheumatic or musculoskeletal disorders, dysmenorrhea, and acute gout. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Necrosis: The sum of the morphological changes indicative of cell death and caused by the progressive degradative action of enzymes; it may affect groups of cells or part of a structure or an organ. [EU] Neurasthenia: A mental disorder characterized by chronic fatigue and concomitant physiologic symptoms. [NIH] Neuroendocrinology: The study of the anatomical and functional relationships between the nervous system and the endocrine system. [NIH] Neurologic: Pertaining to neurology or to the nervous system. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuromuscular: Pertaining to muscles and nerves. [EU] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite

284 Chronic Fatigue Syndrome

or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Neutropenia: Leukopenia in which the decrease in white blood cells is chiefly in neutrophils. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Nitrogen: An element with the atomic symbol N, atomic number 7, and atomic weight 14. Nitrogen exists as a diatomic gas and makes up about 78% of the earth's atmosphere by volume. It is a constituent of proteins and nucleic acids and found in all living cells. [NIH] Norepinephrine: Precursor of epinephrine that is secreted by the adrenal medulla and is a widespread central and autonomic neurotransmitter. Norepinephrine is the principal transmitter of most postganglionic sympathetic fibers and of the diffuse projection system in the brain arising from the locus ceruleus. It is also found in plants and is used pharmacologically as a sympathomimetic. [NIH] Nortriptyline: A metabolite of amitryptyline that is also used as an antidepressive agent. Nortriptyline is used in major depression, dysthymia, and atypical depressions. [NIH] Nystatin: Macrolide antifungal antibiotic complex produced by Streptomyces noursei, S. aureus, and other Streptomyces species. The biologically active components of the complex are nystatin A1, A2, and A3. [NIH]

Ondansetron: A competitive serotonin type 3 receptor antagonist. It is effective in the treatment of nausea and vomiting caused by cytotoxic chemotherapy drugs, including cisplatin, and it has reported anxiolytic and neuroleptic properties. [NIH] Opiate: A remedy containing or derived from opium; also any drug that induces sleep. [EU] Orthopaedic: Pertaining to the correction of deformities of the musculoskeletal system; pertaining to orthopaedics. [EU] Orthopedics:

A surgical specialty which utilizes medical, surgical, and

Glossary 285

physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Orthostatic: Pertaining to or caused by standing erect. [EU] Osmolality: The concentration of osmotically active particles in solution expressed in terms of osmoles of solute per kilogram of solvent. The osmolality is directly proportional to the colligative properties of solutions; osmotic pressure, boiling point elevation, freezing point depression, and vapour pressure lowering. [EU] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Panic: A state of extreme acute, intense anxiety and unreasoning fear accompanied by disorganization of personality function. [NIH] Paroxetine: A serotonin uptake inhibitor that is effective in the treatment of depression. [NIH] Pathogen: Any disease-producing microorganism. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Pelvic: Pertaining to the pelvis. [EU] Perfusion: 1. the act of pouring over or through, especially the passage of a fluid through the vessels of a specific organ. 2. a liquid poured over or through an organ or tissue. [EU] Pericarditis: Inflammation of the pericardium. [EU] Perspiration: Sweating; the functional secretion of sweat. [EU] Pharyngitis: Inflammation of the pharynx. [EU] Phobia: A persistent, irrational, intense fear of a specific object, activity, or situation (the phobic stimulus), fear that is recognized as being excessive or unreasonable by the individual himself. When a phobia is a significant source of distress or interferes with social functioning, it is considered a mental disorder; phobic disorder (or neurosis). In DSM III phobic disorders are subclassified as agoraphobia, social phobias, and simple phobias. Used as a word termination denoting irrational fear of or aversion to the subject indicated by the stem to which it is affixed. [EU] Photophobia: Abnormal visual intolerance of light. [EU] Piroxicam: 4-Hydroxy-2-methyl-N-2-pyridyl-2H-1,2-benzothiazine-3carboxamide 1,1-dioxide. A non-steroidal anti-inflammatory agent that is well established in the treatment of rheumatoid arthritis and osteoarthritis. Its usefulness has also been demonstrated in the treatment of musculoskeletal disorders, dysmenorrhea, and postoperative pain. Its long

286 Chronic Fatigue Syndrome

half-life enables it to be administered once daily. The drug has also been shown to be effective if administered rectally. Gastrointestinal complaints are the most frequently reported side effects. [NIH] Plethysmography: Recording of change in the size of a part as modified by the circulation in it. [NIH] Pneumonia: Inflammation of the lungs with consolidation. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Premenstrual: Occurring before menstruation. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] Protease: Proteinase (= any enzyme that catalyses the splitting of interior peptide bonds in a protein). [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]

Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychology: The science dealing with the study of mental processes and behavior in man and animals. [NIH] Psychomotor: Pertaining to motor effects of cerebral or psychic activity. [EU] Psychopathology: The study of significant causes and processes in the development of mental illness. [NIH]

Glossary 287

Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]

Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Pulmonary: Pertaining to the lungs. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH] Quercetin: Aglucon of quercetrin, rutin, and other glycosides. It is widely distributed in the plant kingdom, especially in rinds and barks, clover blossoms, and ragweed pollen. [NIH] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Reactivation: The restoration of activity to something that has been inactivated. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Reflex: 1; reflected. 2. a reflected action or movement; the sum total of any particular involuntary activity. [EU] Relaxant: 1. lessening or reducing tension. 2. an agent that lessens tension. [EU]

Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Rhinitis: Inflammation of the mucous membrane of the nose. [EU] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its

288 Chronic Fatigue Syndrome

principal forms in tissues and cells are as FMN and FAD. [NIH] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Sarcoma: A tumour made up of a substance like the embryonic connective tissue; tissue composed of closely packed cells embedded in a fibrillar or homogeneous substance. Sarcomas are often highly malignant. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. the process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. any substance produced by secretion. [EU] Sedentary: 1. sitting habitually; of inactive habits. 2. pertaining to a sitting posture. [EU] Sedimentation: The act of causing the deposit of sediment, especially by the use of a centrifugal machine. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of

Glossary 289

glutathione peroxidase. [NIH] Serology: The study of serum, especially of antigen-antibody reactions in vitro. [NIH] Sertraline: A selective serotonin uptake inhibitor that is used in the treatment of depression. [NIH] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Somatic: 1. pertaining to or characteristic of the soma or body. 2. pertaining to the body wall in contrast to the viscera. [EU] Somnolence: Sleepiness; also unnatural drowsiness. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Staphylococcus: A genus of gram-positive, facultatively anaerobic, coccoid bacteria. Its organisms occur singly, in pairs, and in tetrads and characteristically divide in more than one plane to form irregular clusters. Natural populations of Staphylococcus are membranes of warm-blooded animals. Some species are opportunistic pathogens of humans and animals. [NIH]

Stimulant: 1. producing stimulation; especially producing stimulation by causing tension on muscle fibre through the nervous tissue. 2. an agent or remedy that produces stimulation. [EU] Streptococcus: A genus of gram-positive, coccoid bacteria whose organisms occur in pairs or chains. No endospores are produced. Many species exist as commensals or parasites on man or animals with some being highly pathogenic. A few species are saprophytes and occur in the natural environment. [NIH] Subacute: Somewhat acute; between acute and chronic. [EU] Sweat: The fluid excreted by the sweat glands. It consists of water containing sodium chloride, phosphate, urea, ammonia, and other waste products. [NIH] Symptomatology: 1. that branch of medicine with treats of symptoms; the systematic discussion of symptoms. 2. the combined symptoms of a disease. [EU]

Synovitis:

Inflammation of a synovial membrane. It is usually painful,

290 Chronic Fatigue Syndrome

particularly on motion, and is characterized by a fluctuating swelling due to effusion within a synovial sac. Synovitis is qualified as fibrinous, gonorrhoeal, hyperplastic, lipomatous, metritic, puerperal, rheumatic, scarlatinal, syphilitic, tuberculous, urethral, etc. [EU] Syphilis: A contagious venereal disease caused by the spirochete treponema pallidum. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Tachycardia: Excessive rapidity in the action of the heart; the term is usually applied to a heart rate above 100 per minute and may be qualified as atrial, junctional (nodal), or ventricular, and as paroxysmal. [EU] Thoracic: Pertaining to or affecting the chest. [EU] Thrombosis: The formation, development, or presence of a thrombus. [EU] Thyrotoxicosis: The condition resulting from presentation to the tissues of excessive quantities of the thyroid hormones, whether the excess results from overproduction by the thyroid gland (as in Graves' disease), originated outside the thyroid, or is due to loss of storage function and leakage from the gland. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Titre: The quantity of a substance required to produce a reaction with a given volume of another substance, or the amount of one substance required to correspond with a given amount of another substance. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]

Tone: 1. the normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. a particular quality of sound or of voice. 3. to make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transdermal: Entering through the dermis, or skin, as in administration of a drug applied to the skin in ointment or patch form. [EU] Transfusion: The introduction of whole blood or blood component directly

Glossary 291

into the blood stream. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Tremor: An involuntary trembling or quivering. [EU] Tricyclic: Containing three fused rings or closed chains in the molecular structure. [EU] Trimebutine: Proposed spasmolytic with possible local anesthetic action used in gastrointestinal disorders. [NIH] Trimipramine: Tricyclic antidepressant similar to imipramine, but with more antihistaminic and sedative properties. [NIH] Trustees: Board members of an institution or organization who are entrusted with the administering of funds and the directing of policy. [NIH] Tryptophan: An essential amino acid that is necessary for normal growth in infants and for nitrogen balance in adults. It is a precursor serotonin and niacin. [NIH] Tuberculosis: Any of the infectious diseases of man and other animals caused by species of mycobacterium. [NIH] Ulcer: A local defect, or excavation, of the surface of an organ or tissue; which is produced by the sloughing of inflammatory necrotic tissue. [EU] Ultrasonography: The visualization of deep structures of the body by recording the reflections of echoes of pulses of ultrasonic waves directed into the tissues. Use of ultrasound for imaging or diagnostic purposes employs frequencies ranging from 1.6 to 10 megahertz. [NIH] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Uveitis: An inflammation of part or all of the uvea, the middle (vascular) tunic of the eye, and commonly involving the other tunics (the sclera and cornea, and the retina). [EU] Vaginal: 1. of the nature of a sheath; ensheathing. 2. pertaining to the vagina. 3. pertaining to the tunica vaginalis testis. [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU] Vasoconstriction: The diminution of the calibre of vessels, especially constriction of arterioles leading to decreased blood flow to a part. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or

292 Chronic Fatigue Syndrome

RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU]

General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·

Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna

·

Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna

·

A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna

·

Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna

·

Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna

·

Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812,

Glossary 293

http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618 ·

Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna

·

Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna

·

Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna

·

Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna

294 Chronic Fatigue Syndrome

INDEX A Abdominal........................12, 22, 116, 275 Acetylcholinesterase..............................95 Acidosis ...................................42, 60, 281 Acyclovir ................................................23 Adenine .................................55, 128, 269 Adenosine................................24, 55, 269 Adverse ....... 21, 22, 23, 24, 60, 105, 203, 221, 280, 281 Aerobic ............................................83, 98 Alanine.....................................18, 34, 130 Alkaline ......................18, 34, 55, 130, 269 Amitriptyline ...........................................22 Amnesia.................................................22 Anabolic ...............................................123 Analgesic .........................60, 61, 280, 283 Anaphylactic ..........................................24 Anaphylaxis .........................................270 Androgens ...........................................124 Anemia ................................................178 Anorexia ..........................................27, 35 Antecedent ............................................98 Antibiotic ........................64, 196, 284, 289 Antibody......23, 28, 36, 57, 115, 117, 130, 136, 205, 212, 259, 271, 274, 280, 282, 289 Anticholinergic .................55, 56, 270, 272 Antidepressant..55, 56, 58, 152, 270, 272, 277, 291 Antigen .....55, 77, 95, 117, 136, 259, 270, 280, 282, 289 Antimicrobial ..........................................22 Antiproliferative....................................126 Antiviral .....23, 55, 95, 126, 127, 133, 134, 236, 269 Anxiety......12, 28, 30, 34, 36, 39, 60, 107, 205, 221, 280, 281, 285 Anxiolytic ...............56, 152, 196, 272, 284 Arginine ...............................................107 Arterial ...........................59, 101, 109, 279 Arteriolar ..............................................102 Arthralgia .............................................131 Aseptic ...................................................45 Aspartame .............................................18 Assay...................................106, 136, 280 Astemizole .............................................23 Atenolol..................................................23 Atrophy ........................................123, 178 Autoimmunity.........................................69 Autonomic...... 17, 96, 101, 105, 109, 117, 284

B Basophils .............................................. 41 Benzodiazepines .................. 50, 196, 272 Bile .................................. 42, 56, 272, 273 Biliary .................................... 44, 151, 275 Bilirubin ......................................... 44, 130 Biopsy ................................................... 45 Blindness ............................................ 141 Bupropion.............................................. 22 C Candidiasis ......................................... 232 Capsules ............................................. 227 Carbohydrate ........................ 59, 227, 278 Cardiac........................ 101, 116, 131, 276 Cardiopulmonary ................................ 109 Cardiovascular ............................ 151, 275 Carnitine...................................... 203, 230 Carotene ............................................. 216 Catheter ................................................ 94 Causal....................................... 15, 16, 45 Cervical ........................... 37, 63, 130, 288 Chemotherapy ............................ 152, 284 Cholangitis ............................................ 44 Cholesterol.................. 224, 227, 237, 281 Cirrhosis.......................................... 42, 44 Clonazepam.......................................... 22 Coenzyme..................................... 24, 203 Cognition............................................... 23 Conception............................................ 40 Concomitant.......................... 61, 149, 283 Confusion...................................... 40, 172 Coronary ............................................. 132 Cortex .. 59, 110, 112, 116, 118, 277, 279, 286 Cranial............................................. 21, 46 Creatine .............................. 130, 136, 274 Cytokines .......................... 16, 46, 96, 104 Cytomegalovirus ................................. 141 D Defecation........................................... 204 Degenerative ........................ 63, 225, 287 Dehydration........................................... 42 Desipramine.......................................... 22 Detoxification ...................................... 204 Diaphragm .................................. 116, 275 Diarrhea .................................. 12, 42, 224 Dizziness............................................... 12 E Echinacea ............................. 24, 204, 212 Edema................................................. 101 Electrolyte ..................................... 62, 286 Empiric .................................................. 40

Index 295

Encephalitis ...........................................45 Encephalomyelitis......11, 69, 71, 129, 207 Endogenous ........................................123 Epidemic......................................140, 148 Epinephrine ...........96, 106, 117, 182, 284 Erythrocytes.............41, 58, 167, 270, 277 Estradiol.................................................94 Exogenous...................................136, 277 F Fibrosis ............................57, 63, 273, 288 Filtration...............................................101 Fludrocortisone....................................103 Fluorescence .......................106, 116, 277 Fluoxetine ..............................................22 G Gastrointestinal....... 22, 45, 58, 116, 151, 152, 275, 276, 277, 291 Genital .................................................132 Ginseng .................24, 204, 212, 216, 219 Glomerulonephritis ................................44 Glucose ...............18, 34, 43, 59, 130, 278 Gluten ..................................................229 Gonadal .................................................94 H Hepatitis.....................................27, 35, 41 Homeostasis........................................231 Homogeneous .......................31, 152, 288 Hormonal .....................12, 17, 94, 96, 107 Hormones .......16, 57, 106, 107, 117, 118, 136, 270, 274, 281, 287, 290 Hydrocortisone ..............................17, 161 Hypersensitivity .....................77, 229, 270 Hyperthyroidism.......................44, 59, 279 Hypotension..17, 101, 103, 114, 117, 207, 230, 282 Hypothalamic...............16, 94, 96, 97, 107 Hypothalamus......................................107 Hypothyroidism..... 12, 27, 28, 35, 36, 43, 60, 279 I Iatrogenic .........................................27, 35 Ibuprofen ...............................................22 Idiopathic ....18, 26, 36, 37, 38, 39, 40, 56, 59, 63, 271, 279, 288 Immunoassay ......................................125 Immunotherapy....................................212 Inflammation .....17, 41, 42, 57, 58, 59, 63, 136, 155, 273, 276, 278, 279, 282, 288, 291 Infusion ................................................123 Insomnia ..................................11, 22, 135 Interferons .............................................23 Intoxication ........................42, 43, 65, 292 Intravenous......................................14, 94 Ischemia ..............................................108

K Ketoacidosis ......................................... 43 L Libido .................................. 123, 136, 270 Lipoprotein .......................... 230, 237, 281 Loratadine ............................................. 23 Lorazepam ............................................ 22 Lupus ...................................... 44, 52, 132 Lymphokines............................... 126, 127 Lymphoma .................................. 168, 281 M Malabsorption ....................................... 42 Malaise.................................... 11, 37, 135 Malignant ..... 42, 60, 152, 168, 280, 281, 288 Manifest .......................................... 30, 94 Mediator .............................................. 104 Membrane...... 61, 78, 106, 151, 155, 276, 282, 287, 289 Meningitis................................ 45, 61, 282 Mentors ............................................... 102 Methionine .......................................... 129 Midodrine ............................................ 102 Monocytes............................. 61, 126, 282 Mononucleosis . 11, 12, 15, 19, 45, 52, 61, 95, 282 Musculature ........................................ 123 Myocarditis.......................................... 132 Myoglobin.............................................. 44 N Naloxone............................. 133, 137, 283 Naltrexone........................... 133, 137, 283 Naproxen .............................................. 22 Nausea............................ 12, 22, 152, 284 Necrosis ........................ 63, 104, 106, 288 Neurasthenia ................ 4, 11, 28, 36, 210 Neuroendocrinology............................ 140 Neurologic................................. 34, 82, 95 Neurology...................................... 61, 283 Neuromuscular ............. 95, 115, 134, 269 Neuropathy ........................................... 82 Neurotransmitter ... 55, 117, 182, 269, 284 Niacin .................................................. 225 Nickel .................................................. 232 Nicotine ............................................... 107 Nitrogen ............ 18, 34, 44, 130, 136, 270 Norepinephrine ...... 55, 57, 106, 182, 270, 275, 284 Nortriptyline........................................... 22 Nystatin ....................................... 196, 284 O Opiate ................................. 132, 137, 283 Orthostatic........................... 101, 103, 108 Osmolality ............................... 44, 62, 285 Overdose ............................................ 225

296 Chronic Fatigue Syndrome

P Panic................................................12, 22 Pathogen .........................................15, 96 Pelvic ...........................................101, 107 Perfusion .............................160, 168, 279 Pericarditis...........................................132 Perspiration .........................................204 Pharmacologic...................21, 95, 96, 203 Pharyngitis...........................................130 Phobia .........................................152, 285 Piroxicam ...............................................22 Plethysmography.........................101, 109 Posterior ..............................................130 Postural ...............................................101 Potassium..............43, 105, 221, 227, 278 Predisposition ......................................100 Prevalence.........................12, 82, 95, 128 Progesterone .........................................94 Protease ..............................................122 Proteins ......42, 46, 57, 61, 115, 122, 224, 226, 271, 274, 284 Psychiatric ..26, 30, 31, 34, 38, 39, 40, 95, 96, 97, 103, 109, 130, 134, 149, 160 Psychomotor..........................................34 Psychopathology .................................140 Psychosomatic ....................................131 Psychotropic ..........................................95 Pulmonary ...............28, 36, 123, 151, 278 Pulse................................................17, 94 Q Quercetin ...............................................24 R Reactivation...........................................14 Receptor ....... 57, 60, 115, 132, 151, 196, 271, 272, 274, 281, 284 Reflex ..................................................101 Respiratory ......63, 78, 151, 270, 273, 288 Rheumatoid .............61, 62, 132, 283, 285 Rheumatology ...............................95, 109 Rhinitis .............................56, 60, 271, 281 Riboflavin.............................203, 224, 229 Rubella ..................................................15 S Sarcoidosis ............................................42 Sarcoma ..............................................140 Schizophrenia........12, 27, 35, 39, 65, 292

Sclerosis .... 19, 28, 34, 52, 124, 132, 155, 178 Secretion...... 16, 60, 63, 94, 96, 107, 117, 118, 126, 127, 151, 275, 279, 281, 282, 285, 288 Sedentary............................................ 106 Sedimentation ................... 18, 34, 41, 130 Seizures ........................ 57, 152, 274, 288 Selenium ....................................... 24, 226 Sertraline............................................... 22 Serum .. 18, 34, 42, 44, 64, 104, 130, 259, 289 Somatic ......................................... 30, 210 Somnolence .......................................... 40 Spectrum....................................... 11, 166 Subacute......................... 12, 58, 132, 278 Surgical ....................... 116, 118, 273, 284 Sweat .......................................... 118, 285 Sympathetic .. 97, 101, 109, 117, 119, 284 Syphilis.................................................. 36 Systemic .... 44, 63, 78, 95, 116, 126, 127, 132, 151, 270, 273, 276, 288 T Tachycardia ........................................ 101 Thermoregulation................................ 224 Thoracic ...................................... 116, 275 Thrombosis ......................................... 132 Thyrotoxicosis ....................................... 42 Thyroxine ............................................ 226 Tomography.............................. 29, 35, 46 Topical ........................................ 196, 290 Transdermal........................................ 123 Tremor ................................................ 178 Tricyclic ..................... 50, 55, 57, 270, 275 Tryptophan.................................... 24, 203 Tuberculosis.......................... 60, 140, 281 U Ultrasonography ................................. 101 Urinalysis .................. 18, 34, 64, 130, 291 Urinary ................................ 151, 274, 275 V Vagal................................................... 102 Vasoconstriction ................. 101, 116, 276 Viral..... 16, 23, 41, 95, 113, 132, 140, 154 Viruses ... 14, 15, 45, 55, 60, 61, 126, 127, 269, 271, 280, 282

Index 297

298 Chronic Fatigue Syndrome