Handbook of Chronic Fatigue Syndrome / Edition 1

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Complete Coverage of chronic fatigue syndrome

The Handbook of Chronic Fatigue Syndrome provides authoritative coverage of Chronic Fatigue Syndrome (CFS). A leading group of international contributors present up-to-date information and guidance to improve the understanding, proper identification, and treatment of this debilitating disease.

The handbook's comprehensive, multidisciplinary format draws on the medical, as well as mental health-related, aspects of CFS, including:

  • History, diagnosis, and classification
  • Phenomenology
  • Symptomatology
  • Assessment
  • Treatment and intervention
  • Pediatric and community issues
Topics covered include complexity of diagnosis, social effects of chronic disorders, and a variety of treatment techniques, including phase-based therapy, cognitive-behavioral therapies, exercise therapy, and nutritional approaches.

An insightful and unique resource, the Handbook of Chronic Fatigue Syndrome is an enlightening book for all mental health professionals, including psychologists, social workers, and counselors, as well as medical personnel, such as nurses, physicians, and physical-occupational therapists.

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Editorial Reviews

From the Publisher
"Highly recommended for all academic, medical , and hospitallibraries as well as all who are concerned with this complexdisease." (Medical Reference Services Quarterly, Vol.23,No.3; Fall 2004)

“…will provide a useful resource for those workingwith CFS patients” (Psychological Medicine, Vol.34,2004)

Chronic fatigue syndrome (CFS) is a debilitating disease whose"cause and pathophysiology…remain unknow." The editors ofthis handbook, Jason (director, Ctr. For Community Research, DePaulUniv.), Patricia Fennell (CEO, Albany Health Management), and ReneeTaylor (occupational therapy, Univ. of Illinois, Chicago) haveworked in the SCF field since the 1980s and have publishedextensively in the medical literature. Here, they have assembledentries on CFS by over 50 international contributors, includingphysicians, researchers, and psychologists affiliated with suchdiverse institutions as they University of Miami School ofMedicine, Glaxo Wellcome, and the Institute of Psychiatry inLondon, Aimed at clinicians, researchers, allied healthprofessionals, and counselors, the handbook covers an enormousnumber of topics, including diagnosis, genetics, social effects,family systems, sleep disorders, rehabilitation counseling, stress,exercise therapy, and pediatric issues. The chapter "Social Effectsof Chronic Disorders" contains virtually the only case studies inthe text. There are several dozen black-and-white charts, fi guresand tables, ranging from "Nutritional Supplementations for CFS" toa cognitive-behavioral therapy outline of treatment. It should benoted that this books does not cover post-polio fatigue, and thereis just one chapter on fibromyalgia as it relates to CFS. There areauthor and subject indexes, and every chapter ends with a lengthy,up-to-date bibliography. Most references are from major medical,social science, and allied health journals. Less scientificallyoriented than Chronic Fatigue Syndrome: A BiologicalApproach, edited by Patrick Englebienne and Kenny Demeirleir,this is a reasonably priced textbook from a reputable publisher andis suitable for medical, academic, and hospital libraries lackingcurrent nonconsumer titles on the topic. —Martha E. Stone,Massachusetts General Hosp. Lib., Boston. (Library Journal,November 1, 2003)

Written by a virtual Who’s Who of CFIDS researchers,clinicians and patients, the Handbook touches on every aspect ofthe CIFDS experience—from assessment, treatment andsymptomatology to patient perspectives. While it does not break newground in terms of research or patient care, the book serves as acomprehensive primer. Although it’s written with health-careprofessionals in mind, astute lay readers should find the Handbookan enlightening guide. (The CIFDS Chronicle, Fall, 2003(Volume 16, number 4, page 23)

"...a thorough guide to the issues facing health-careproviders...helps to give a comprehensive understanding of themajor issues..." (IJTR Books, Vol 11(2), 2004)

Library Journal
Chronic fatigue syndrome (CFS) is a debilitating disease whose "cause and pathophysiology...remain unknown." The editors of this handbook, Jason (director, Ctr. for Community Research, DePaul Univ.), Patricia Fennell (CEO, Albany Health Management), and Renee Taylor (occupational therapy, Univ. of Illinois, Chicago) have worked in the CFS field since the 1980s and have published extensively in the medical literature. Here, they have assembled entries on CFS by over 50 international contributors, including physicians, researchers, and psychologists affiliated with such diverse institutions as the University of Miami School of Medicine, Glaxo Wellcome, and the Institute of Psychiatry in London. Aimed at clinicians, researchers, allied health professionals, and counselors, the handbook covers an enormous number of topics, including diagnosis, genetics, social effects, family systems, sleep disorders, rehabilitation counseling, stress, exercise therapy, and pediatric issues. The chapter "Social Effects of Chronic Disorders" contains virtually the only case studies in the text. There are several dozen black-and-white charts, figures, and tables, ranging from "Nutritional Supplementation for CFS" to a cognitive-behavioral therapy outline of treatment. It should be noted that this book does not cover post-polio fatigue, and there is just one chapter on fibromyalgia as it relates to CFS. There are author and subject indexes, and every chapter ends with a lengthy, up-to-date bibliography. Most references are from major medical, social science, and allied health journals. Less scientifically oriented than Chronic Fatigue Syndrome: A Biological Approach, edited by Patrick Englebienne and Kenny Demeirleir, this is a reasonably priced textbook from a reputable publisher and is suitable for medical, academic, and hospital libraries lacking current nonconsumer titles on the topic.-Martha E. Stone, Massachusetts General Hosp. Lib., Boston Copyright 2003 Reed Business Information.
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Product Details

  • ISBN-13: 9780471415121
  • Publisher: Wiley
  • Publication date: 6/20/2003
  • Edition number: 1
  • Pages: 794
  • Product dimensions: 7.24 (w) x 10.30 (h) x 1.64 (d)

Meet the Author

LEONARD A. JASON, PhD, is former president of APA's division ofCommunity Psychology and has written or edited fifteen books,including A Clinician's Guide to Controversial Illnesses (withRenée R. Taylor and Fred Friedberg) and Understanding ChronicFatigue Syndrome (with Fred Friedberg). He is the Director of theCenter for Community Research at DePaul University.

PATRICIA A. FENNELL, MSW, CSW-R, is a researcher and clinicianspecializing in chronic illness and trauma. She is CEO of AlbanyHealth Management, Inc., a center for counseling, consulting,professional education, doctoral training for the State Universityof New York, and for collaborative international research using herempirically validated "Four-Phase Model". Her recent publicationsinclude Managing Chronic Illness Using the Four-Phase TreatmentApproach: A Mental Health Professional's Guide to HelpingChronically Ill People (Wiley) and The Chronic IllnessWorkbook.

RENÉE R. TAYLOR, PhD, is an Associate Professor in theDepartment of Occupational Therapy at the University of Illinois,Chicago. She specializes in research on chronic fatigue and iscoauthor of A Clinician's Guide to Controversial Illnesses (withFred Friedberg and Leonard A. Jason).

CHARLES W. LAPP, MD, is Director of the Hunter-Hopkins Center inCharlotte, North Carolina, which specializes in the treatment ofCFS. He is former vice president of the American Association forCFS and a board member of the American Fibromyalgia SyndromeAssociation.

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Read an Excerpt

Handbook of Chronic Fatigue Syndrome

John Wiley & Sons, Inc.

Copyright © 2003 John Wiley & Sons
All right reserved.

ISBN: 0-471-41512-X

Chapter One


Valid and reliable epidemiological data can be valuable tools in advancing scientific understanding of the etiology, natural history, diagnostic validity, and basic prevalence, incidence, and mortality of many poorly understood conditions. Chronic fatigue syndrome (CFS) and illnesses with similar symptoms have been described clinically for over 150 years (Wessely, Hotopf, & Sharpe, 1998). The term neurasthenia (fatigue as an illness in the absence of disease), which was coined in 1869 by George Beard, was one of the most prevalent diagnoses in the late 1800s (Wessely et al., 1998). But by the early part of the twentieth century, doctors seldom used the diagnosis of neurasthenia, and medical personnel sometimes may have diagnosed patients with severe fatigue as having either a depressive illness or another psychiatric condition.

In the past 45 years, unexplained fatigue-related illnesses with various labels (chronic fatigue syndrome, epidemic neuromyasthenia, and chronic encephalomyelitis) have been hypothesized to occur in well-documented clusters of outbreaks throughout the world (Levine, 1994). Although many of these outbreaks have been characterized by chronic fatigue, the patterning of associated physical and cognitive symptoms has varied across clusters, and clinical descriptions of these symptoms have not always conformed to the formal case definitions for chronic fatigue syndrome (Fukuda et al., 1997; Levine, 1997). Fukuda and associates (1997) investigated one such reported cluster and found no evidence for outbreak clustering. Symptoms and features of generic forms of fatigue that resembled CFS but did not meet the case definition were present in both the community in question and a control community. In another study of self-reported CFS-like illness, Shefer and colleagues (1997) surveyed 3,312 employees in two office buildings suspected to have housed an outbreak and in a comparable control building. Although the researchers identified a substantial number of employees with fatiguing illness in the two office buildings in question, the prevalence of CFS-like illness was not significantly different from that of the control building. By contrast, an investigation of a cluster outbreak of a CFS-like illness in 21 patients in West Otago, New Zealand (Levine, Snow, Ranum, Paul, & Holmes, 1997), found that 48% of the patients met the Fukuda et al. (1994) criteria for CFS. More common among documented outbreaks have been the associated characteristics of female gender and the coexistence of either physical or psychological stress (Levine, 1997). A nationwide survey conducted in Japan identified three distinct clusterings of two cases that met the Japanese version of the CDC criteria (Fukuda et al., 1994). The fatigue-related symptoms reported by different groups may have been influenced, in part, by differences in population characteristics involving social, economic, and cultural variables.

Prevalence estimates of CFS have varied from 3 to 2,800 cases per 100,000 (Jason et al., 1999; Wessely, 1995) depending on the population sampled. Moreover, there has been extraordinary variation in diagnostic practices within general medical settings (Wessely, 1995). Within the United States, findings from a retrospective chart review study indicated that physician workup for chronic fatigue is often incomplete (Ward, DeLisle, Shores, Slocum, & Foresman, 1996). Physicians under study were described as lax in ordering lab work and performing complete mental status and physical examinations, and they did not take an adequate history of patients' chief complaint of chronic fatigue, nor did they record patients' psychiatric and sleep histories adequately (Ward et al., 1996).

Only recently have CFS researchers noted that individuals within different sociocultural contexts vary greatly in their help-seeking behavior in response to illness, and in their economic access to the health care system (Mechanic, 1983). A growing number of investigations have challenged the early assumption that CFS is solely a disease of young to middle-aged White women (e.g., the "Yuppie Flu"). Reports by K. M. Bell, Cookfair, Bell, Reese, and Cooper (1991) and D. S. Bell, Bell, and Cheney (1994) have drawn increased attention to the occurrence of CFS in children, which will allow improved detection in this age group. Alisky, Iczkowski, and Foti (1991) found that more cases of CFS were reported in African Americans than would be expected from the percentage of African American patients in the physician's practice. Other researchers have found high rates of CFS among men, individuals of lower socioeconomic status, and people of color, including Latinos (Buchwald et al., 1995; Jason et al., 1999; Lloyd, Hickie, Boughton, Spencer, & Wakefield, 1990).

In a large-scale community-based study conducted by Jason and associates (1999), the prevalence of CFS was notably higher among Latinos and, to a lesser degree, African Americans, than among Caucasians. Similarly, Buchwald and colleagues (1995) found that women were not overrepresented in their study, Caucasians were underrepresented, and African Americans were overrepresented. With respect to gender, Lloyd and associates (1990) found a female-to-male ratio of 1.3 to 1.0. Studies in Australia (Lloyd et al., 1990) and in the United States (Jason et al., 1999) have emphasized the socioeconomic diversity of patients. Jason and associates found the highest CFS prevalence rates among skilled craftspersons, clerical, and salespersons; second highest rates occurred among unskilled laborers, machine operators, and semiskilled workers; and lowest rates were found among professionals.

Marked variability in prevalence rates across studies and within samples suggests that the prevalence of CFS may be significantly influenced by sociodemographic characteristics. Previous epidemiological studies of CFS have, for the most part, been conducted within medical settings (Buchwald et al., 1995), or by using rosters of those enrolled in health maintenance organizations (Richman, Flaherty, & Rospenda, 1994). More recent studies of randomly selected community-based samples more representative of the general population have revealed some of the underlying sociodemographic bases for the observed disparities in prevalence rates and heterogeneity in symptom presentations (Jason et al., 1999). The epidemiology of this syndrome has stimulated significant interest and controversy within the scientific community.

This chapter reviews the history of epidemiological research involving CFS, discusses the implications of current findings, and offers suggestions for future research. A history of prevalence research is provided and different methodological approaches to estimating the prevalence of CFS in adults, adolescents, and children are compared. In addition, the chapter reviews issues concerning the incidence and long-term prognosis of CFS as well as sociodemographic considerations.

Studies of Patients in Medical Settings

In one of the earliest known studies of CFS prevalence, Ho-Yen (1988) surveyed general practitioners and reviewed data contained on viral serology requisitions to explore the prevalence of CFS. Ho-Yen used previously documented diagnoses such as "postviral fatigue" to count the number of individuals with probable CFS. Using this indirect method, this investigator suggested that the number of cases ranged from 51 to 131 per 100,000 residents of Great Britain. Sociodemographic variables were not examined in this investigation.

Two years later, David and associates (1990) examined self-reported CFS symptoms reported on a fatigue questionnaire from 611 general practice attendees in a London general practice. Of these patients, 10.5% reported substantial fatigue for one month or more. The profile of substantial fatigue did not differ from that of shorter duration, and participants attributed physical and nonphysical causes to their fatigue equally. The ratios of men and women reporting persistent fatigue were roughly equivalent (10.2% men and 10.6% women). However, these investigators found only one patient with a chronic fatigue syndrome-like illness who had at least 6 months of significant fatigue. This study was limited by nonrandom sampling methods, a small sample size, and the use of a single, self-report measure to roughly assess for the presence of CFS.

A third group of investigators from Great Britain screened 686 patients attending primary care physicians and identified 77 individuals with chronic fatigue (McDonald, David, Pelosi, & Mann, 1993). Of these, 65 patients underwent a comprehensive medical and psychological evaluation. Seventeen cases (26%) met the Sharpe et al. (1991) criteria for CFS. Patients were not excluded from a diagnosis of CFS if they met ICD-9 criteria for current neurotic depression or neurasthenia. Although this study used a more sophisticated, comprehensive evaluation to assess for CFS, its generalizability was nevertheless limited to those who could afford to seek primary medical care and were willing to do so.

In a smaller study, Conti and colleagues (1994) evaluated 63 patients attending a tertiary care fatigue clinic in the Lazio region of central Italy. Participants were selected on the basis of having recurrent or persistent fatigue lasting 6 months and fulfilling at least 4 minor U.S. 1988 CDC criteria for CFS. Individuals with a previously diagnosed illness associated with fatigue were excluded prior to evaluation. Evaluation consisted of clinical examination, standard laboratory testing, and a self-administered questionnaire specifically designed to gain information about the length and severity of symptoms. A diagnosis of CFS based on CDC criteria was established in 6 (9.5%) of the 63 patients. Two participants were excluded because CFS occurred following infectious mononucleosis. Other alternative diagnoses were established in 37 (59%) of the 63 patients, and no definite diagnosis could be formulated for 18 patients (28.5%). Based on these findings, the researchers concluded that, in Italy, CFS seems to be an infrequent cause of severe and persistent fatigue in a selected population. However, the generalizability of findings from this study was limited to tertiary care patients, who tend to suffer more functional impairment, have a greater likelihood of psychiatric illness, and tend to have been ill for a longer period of time (Wessely, 1995). Its generalizability is further limited because not all individuals have independent access to tertiary medical care in Italy.

Minowa and Jiamo (1996) administered a nationwide survey to assess CFS prevalence according to the Japanese version of the CDC criteria (Fukuda et al., 1994) prepared by the CFS Research Group of Japan. The researchers surveyed the following clinical departments of a number of hospitals nationwide with 200 or more beds: internal medicine, pediatrics, psychiatry, and neurology. Adjusted for the response rate, the prevalence of CFS was estimated at 0.85 cases per 100,000. The proportion of postinfectious CFS was 14.8%, and three clusterings of two cases were reported. Similar to the other studies described in this section, these estimates may have been conservative due to differential participation in the survey among hospitals and their respective departments. Moreover, the generalizability of findings was limited to those using medical care.

Prospective Studies in Medical Settings

A group of U.S. researchers (Bates and associates, 1993) prospectively evaluated 1,000 consecutive patients in a primary care clinic to assess the prevalence of unusual, debilitating fatigue and the frequency with which it is associated with CFS. A general physical examination, a detailed medical history, standard laboratory testing, and a structured psychiatric interview and self-report inventory were used. Among the participants, 32.5% reported fatigue, and 27% complained of at least 6 months of unusual fatigue that interfered with their daily lives. Selfreport or review of medical records revealed a medical or psychiatric condition that could explain the fatigue in 69% of the individuals with chronic fatigue. Thus, 8.5% of patients were assessed to have unusual, debilitating chronic fatigue with no apparent etiology. Three met the Holmes et al. (1988) CDC criteria for CFS, four met the Sharpe et al. (1991) criteria, and 10 met the Lloyd et al. (1990) definition. The respective point prevalence estimates were therefore 0.3%, 0.4%, and 1.0% using the CDC, British, and Australian case definitions. These estimates may only be representative of those who can afford and are motivated to attend a primary care clinic.

White and associates (1998) sought to determine CFS prevalence and the role of viruses in the etiology of CFS. They conducted a prospective cohort study of 250 primary care patients presenting with glandular fever or an upper respiratory tract infection. Six months after glandular fever, the most conservative estimate of CFS prevalence was 9%, compared with 0% as the most conservative estimate following an upper respiratory tract infection. Thus, these researchers concluded that glandular fever is a significant risk factor for CFS.

Case Identification by Physicians

Lloyd and coworkers (1990) conducted a study in a largely rural area of Australia. In this study, CFS cases were identified only if they sought medical care from sentinel physicians. Members of the community were not assessed directly. One hundred and four local medical practitioners were first asked to identify cases of CFS in their practice. From an overall population of 114,000, physicians were instructed to select those patients significantly disabled in their usual daily activities who had been suffering from chronic fatigue for at least 6 months. None of the patients had an alternative diagnosis. Twenty-six medical practitioners identified 49 patients. Forty-eight of those patients were screened further with a 50-item questionnaire forwarded by mail. To be retained in the study, patients had to report moderate to severe symptoms during the previous month on at least one of the two questions related to fatigue ("Excessive muscle fatigue with minor activity" and "Prolonged feeling of fatigue after physical activity lasting hours or days") and on at least one of the two questions related to neuropsychiatric functioning (e.g., "loss of concentrating ability or memory loss"). Following this stage, 42 cases were then retained for further medical and psychiatric evaluation. A physician and a psychiatrist were able to diagnose 28 of these 42 cases through mutual consensus.


Excerpted from Handbook of Chronic Fatigue Syndrome Copyright © 2003 by John Wiley & Sons. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents



Chapter 1. Epidemiology (Renée Taylor, etal.).

Chapter 2. Differential Diagnosis in Medical Assessment (AudriusV. Plioplys).

Chapter 3. The Complexities of Diagnosis (Byron Hyde).

Chapter 4. Sociocultural Context (Patricia Fennell).

Chapter 5. Genetics (Patrick F. Sullivan).

Chapter 6. Postinfective Fatigue (Andrew Lloyd).

Chapter 7. Immunology (Kevin Maher, et al.).


Chapter 8. A Four-Phase Approach to Understanding ChronicFatigue Syndrome (Patricia Fennell).

Chapter 9. Social Effects of Chronic Disorders (Kat Duff).

Chapter 10. Family Systems Perspective (Barbara G. Melamed).

Chapter 11. Clinical Perspectives and Patient Experiences (JonSterling).


Chapter 12. Pain and Fatigue (Dennis C. Turk and BeatriceEllis).

Chapter 13. Orthostatic Intolerance (Julian M. Stewart).

Chapter 14. Sleep Disorders (Joan L. Shaver).

Chapt er 15. Cardiac and Virologic Issues (A. Martin Lerner,et al.).

Chapter 16. Neuroendocrine Dysfunction (Anthony Cleare).


Chapter 17. Measuring Symptoms and Fatigue Severity (AntoniaDittner and Trudie Chalder).

Chapter 18. Functional Capacity Evaluation (Kevin McCully).

Chapter 19. Structured Diagnostic Interviews and Self-RatingScales (Fred Friedberg).

Chapter 20. Neurocognitive Assessment (John DeLuca and LanaTiersky).


Chapter 21. Medical Intervention and Management (Paul Levine,et al.).

Chapter 22. Phase-Based Interventions (Patricia Fennell).

Chapter 23. Cognitive-Behavioral Therapies (Gijs Bleijenberg,et al.).

Chapter 24. Stress and Immunity (Michael H. Antoni and DonnaWeiss).

Chapter 25. Development of the SMART-ENERGY Program (DonnaWeiss, et al.).

Chapter 26. Exercise Therapy (Christopher Snell, etal.).

Chapter 27. Nutritional Approaches (Richard VanKonynenburg).

Chapter 28. Rehabilitation Counseling (Donald Uslan).


Chapter 29. Chronic Fatigue Syndrome in Adolescence (Mark ScottSmith and Bryan D. Carter).

Chapter 30. Psychological and Educational Issues forChildren and Adolescents (Bryan D. Carter and TanyaStockhammer).

Chapter 31. Community-Based Interventions (Leonard Jason andRenée Taylor).

Author Index.

Subject Index.

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