Chronic fatigue syndrome: labels, meanings and consequences

Abstract:

In this month’s issue, we report a survey of members of the Association of British Neurologists, which asked if they viewed chronic fatigue syndrome (CFS) as a neurological condition–84% of respondents did not. This is at odds with current classification in ICD-10. We discuss the difficulties of classifying CFS and myalgic encephalopmeylitis (ME), including historical and sociological factors, the pitfalls of the physical/psychological dichotomy and why classification matters to doctors and patients.

 

Source: Wojcik W, Armstrong D, Kanaan R. Chronic fatigue syndrome: labels, meanings and consequences. J Psychosom Res. 2011 Jun;70(6):500-4. doi: 10.1016/j.jpsychores.2011.02.002. Epub 2011 Apr 9. https://www.ncbi.nlm.nih.gov/pubmed/21624573

 

A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities

Abstract:

BACKGROUND: The diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is subject to debate.

AIMS: To measure the time to diagnosis and services accessed.

METHOD: A national cross-sectional study. A profile and service utilisation questionnaire, information on the pathways to diagnosis, the WHOQoL Brief and a listing of priorities of the needs of participants were used. Individuals were invited to participate if they had a medical diagnosis of ME/CFS.

RESULTS: A total of 211 surveys were returned. Prior to diagnosis sufferers accessed on average 4.5 services after their initial consultation. The mean time to diagnosis was 3.7 years but time ranged from 0 to 34 years. Quality of life deteriorated post-onset. The priority for future service provision was increased understanding and diagnosis of ME/CFS by the medical profession.

CONCLUSION: In order to alleviate the burden on the sufferer there is a greater need for education on this condition.

 

Source: Comiskey C, Larkan F. A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities. Ir J Med Sci. 2010 Dec;179(4):501-5. doi: 10.1007/s11845-010-0585-0. Epub 2010 Sep 26. https://www.ncbi.nlm.nih.gov/pubmed/20872086

 

Chronic fatigue in a population-based study of Gulf War veterans

Abstract:

Fatigue has been associated with illness in veterans of the Gulf War; however, few studies have confirmed self-reported fatigue by using clinical evaluation, and symptomatic veterans have not been evaluated with established criteria for Chronic Fatigue Syndrome (CFS). The authors describe the frequency and clinical characteristics of CFS in a sample of veterans residing in the northwestern United States. The sample was selected randomly from U.S. Department of Defense databases of troops deployed to southwest Asia during the Gulf War. The selected individuals were invited to participate in a clinical case-control study of unexplained illness.

Of 799 survey respondents eligible for clinical evaluation, 178 had fatigue symptoms. Of the 130 veterans who were evaluated clinically, 103 had unexplained fatigue, and 44 veterans met the 1994 U.S. Centers for Disease Control criteria for CFS. In this population, the authors estimated a minimum prevalence of any unexplained fatigue to be 5.1%, and of CFS to be 2.2%. The estimated prevalence was greater among females than among males. Cases were similar to healthy controls, as determined by laboratory tests and physical findings. In comparison to several clinical studies of CFS patients, the authors of this study found a lower proportion of veterans who reported a sudden onset of symptoms (19%) vs. a gradual onset (50%).

Although it has previously been suggested that veterans of the Gulf War suffer from higher rates of chronic fatigue than the general population, the study results described herein–on the basis of clinical examination of a population-based sample of veterans-actually indicate that an increased rate may indeed exist. Gulf War veterans with unexplained fatigue should be encouraged to seek treatment so that the impact of these symptoms on overall quality of life can be reduced.

 

Source: McCauley LA, Joos SK, Barkhuizen A, Shuell T, Tyree WA, Bourdette DN. Chronic fatigue in a population-based study of Gulf War veterans. Arch Environ Health. 2002 Jul-Aug;57(4):340-8. http://www.ncbi.nlm.nih.gov/pubmed/12530602

 

Factor analysis of unexplained severe fatigue and interrelated symptoms: overlap with criteria for chronic fatigue syndrome

Abstract:

The objective of this study was to identify factors explaining the correlations among unexplained severe fatigue of different durations (1-5 months or > or =6 months) and symptoms reported as being significant health problems during a preceding 4-week period.

Between June and December of 1994, a cross-sectional, random digit dialing telephone survey was conducted among residents of San Francisco, California. All subjects who reported having severe fatigue lasting for > or =1 month and a random sample of nonfatigued subjects were asked to participate in a detailed telephone interview. Data from 1,510 individuals aged 18-60 years who did not have medical or psychiatric conditions that could explain their severe fatigue were analyzed.

Common factor analyses identified three correlated factors (defined as “fatigue-mood-cognition” symptoms, “flu-type” symptoms, and “visual impairment”) that explained the correlations among fatigue lasting for > or =6 months and 14 interrelated symptoms. No factor explained the correlations among fatigue lasting for 1-5 months and other symptoms.

The combination of fatigue of > or =6 months’ duration and selected symptoms overlaps with published criteria used to define cases of chronic fatigue syndrome (CFS). Although symptoms described in this study were reported as appearing within the preceding month, and CFS symptoms must have been present for the previous 6 months, these results provide empirical support for the interrelations among unexplained fatigue of > or =6 months’ duration and symptoms included in the CFS case definition.

 

Source: Nisenbaum R, Reyes M, Mawle AC, Reeves WC. Factor analysis of unexplained severe fatigue and interrelated symptoms: overlap with criteria for chronic fatigue syndrome. Am J Epidemiol. 1998 Jul 1;148(1):72-7. http://aje.oxfordjournals.org/content/148/1/72.long (Full article)

 

Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience

Abstract:

BACKGROUND: Doctors are called upon to treat chronic debilitating fatigue without the help of a protocol of care.

AIMS: To estimate the incidence of chronic debilitating fatigue in Irish general practice, to obtain information on management strategy and outcome, to explore the attitudes of practitioners (GPs) towards the concept of a chronic fatigue syndrome (CFS), and to recruit practitioners to a prospective study of chronic fatigue in primary care.

METHOD: A total of 200 names were selected from the database of the Irish College of General Practitioners (ICGP); 164 of these were eligible for the study.

RESULTS: Altogether, 118 questionnaires were returned (72%). Ninety-two (78%) responders identified cases of chronic fatigue, giving an estimated 2.1 cases per practice and an incidence of 1 per 1000 population. All social classes were represented, with a male to female ratio of 1:2. Eleven disparate approaches to treatment were advocated. Many (38%) were dissatisfied with the quality of care delivered, and 45% seldom or hardly ever referred cases for specialist opinion. The majority (58%) accepted CFS as a distinct entity, 34% were undecided, and 8% rejected it. Forty-two (35%) GPs volunteered for a prospective study.

CONCLUSION: Chronic fatigue is found in Irish general practice among patients of both sexes and all social classes. Doctors differ considerably in their management of patients and are dissatisfied with the quality of care they deliver. Many cases are not referred for specialist opinion. A prospective database is required to accurately assess the scale of this public health problem and to develop a protocol of care.

 

Source: Fitzgibbon EJ, Murphy D, O’Shea K, Kelleher C. Chronic debilitating fatigue in Irish general practice: a survey of general practitioners’ experience. Br J Gen Pract. 1997 Oct;47(423):618-22. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1410094/ (Full article)

 

Descriptive epidemiology of chronic fatigue syndrome based on a nationwide survey in Japan

Abstract:

In order to clarify the epidemiological features of chronic fatigue syndrome (CFS), a nationwide survey was conducted using the Japanese version of the CDC Criteria prepared by the CFS Research Group of Japan. All clinical departments of internal medicine, pediatrics, psychiatry and neurology at university hospitals and at ordinary hospitals with 200 or more beds were surveyed.

Major results were as follows: (1) Period prevalence adjusted for response rate was 0.85 (0.63 for males and 1.02 for females) per 100,000 population during the year 1992; (2) Based on the first and final dates of hospital visits, the prevalences on January 1 of 1992 and 1993 were 0.40 and 0.60 per 100,000 population, respectively, suggesting an increasing trend; (3) Reported new cases during 1992 were 301, and the response adjusted-incidence was estimated to be 0.46 per 100,000 person-years; (4) The proportion of post-infectious CFS cases was 14.8% for both sexes, and tended to be slightly higher among females than males, but was not related to age. Three clusterings of two cases were reported.

 

Source: Minowa M, Jiamo M. Descriptive epidemiology of chronic fatigue syndrome based on a nationwide survey in Japan. J Epidemiol. 1996 Jun;6(2):75-80. https://www.jstage.jst.go.jp/article/jea1991/6/2/6_2_75/_pdf (Full article)

 

A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program

Abstract:

Persons with Chronic Fatigue Syndrome (PWCs) completed and returned by mail a brief survey of open- and closed-ended items designed to assess their utilization and preferences for a variety of services. A total of 984 middle-aged adults diagnosed with Chronic Fatique Syndrome (CFS) from across North America returned the survey. During the past 12 months, many of these PWCs reported utilization of a primary care physician, gynecologist, CFS specialist, and self-help group to assist in their recovery from CFS. Most PWCs believed it was important to educate both health-care practitioners and the general public about CFS. In terms of their desire for specific recovery needs, factor analysis of responses indicated that these PWCs preferred self-help/social support services and general advocacy services in the treatment of their illness. The implications of these results for developing rehabilitation programs for PWCs are discussed.

 

Source: Jason LA, Ferrari JR, Taylor RR, Slavich SP, Stenzel CL. A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Eval Health Prof. 1996 Jun;19(2):194-207. http://www.ncbi.nlm.nih.gov/pubmed/10186910

 

Chronic fatigue syndrome. Self help groups give valuable support

Editor,-Tony Delamothe’s article on myalgic encephalomyelitis was refreshingly objective,’ but this cannot be said of S M Lawrie and A J Pelosi’s editorial.2 Delamothe questions whether “medical journals keep doctors in the dark.”‘ We believe that the editorial was not even handed.

Within two weeks of publication of the article and editorial our paper on self help groups was published.3 Lawrie and Pelosi’s editorial stated, “if an illness is attributed entirely to external sources there will be little scope for self help.”2 Our results were quite different. The Moray Firth myalgic encephalomyelitis self help group has existed for the past seven years and has had one coordinator (AG). A representative sample of members was surveyed by questionnaire in 1988, 1989, and 1992; response rates were 44/53 (83%), 19/34 (56%), and 42/49 (86%) respectively. The results (table) contradict the statement in the editorial.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/pdf/bmj00440-0054c.pdf

 

Source: Ho-Yen DO, Grant A. Chronic fatigue syndrome. Self help groups give valuable support. BMJ. 1994 May 14;308(6939):1298-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/

 

Professional and popular views of chronic fatigue syndrome

Abstract:

OBJECTIVE: To study the coverage of the chronic fatigue syndrome in the popular and professional press.

DESIGN: Search of all original research papers on the chronic fatigue syndrome published in British journals from 1980 onwards and of professional trade papers, national newspapers, and women’s magazines. Interviews with six medical journalists.

SETTING: British scientific, medical, and popular press.

RESULTS: 37 (49%) articles in research journals did not favour organic causes and 23 (31%) favoured organic causes. By contrast 31 (55%) articles in the medical trade press and 118 (69%) in national newspapers and women’s magazines favoured organic causes.

CONCLUSIONS: Press coverage of chronic fatigue syndrome has amplified and distorted divisions in the research community concerning the chronic fatigue syndrome. Articles in the press concentrate on a simple medical model of illness reinforcing the stigma of psychological illness and dissatisfaction with traditional medical authority.

Comment in:

Chronic fatigue syndrome: prevalence and outcome. [BMJ. 1994]

Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

Source: MacLean G, Wessely S. Professional and popular views of chronic fatigue syndrome. BMJ. 1994 Mar 19;308(6931):776-7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539637/

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539637/pdf/bmj00432-0054.pdf

 

Estimating the prevalence of chronic fatigue syndrome and associated symptoms in the community

Abstract:

Chronic fatigue syndrome is a poorly understood disease characterized by debilitating fatigue and neuromuscular and neuropsychological symptoms. Despite numerous studies on the subject, the epidemiology of the syndrome in the community remains largely unexplored.

An estimate of the prevalence in the population is presented, approximating the Centers for Disease Control criteria as well as the prevalence estimates of the fatigue symptom complex that include fatigue, disability, and neuromuscular and neuropsychological symptoms. The study population consisted of a very large, multicenter, stratified, and random sample of a general population health survey known as the Epidemiologic Catchment Area Program.

Data used for this study were gathered between 1981 and 1984. The Diagnostic Interview Schedule, a highly structured mental health interview, was used to assess the lifetime prevalence of medical and psychological symptoms. Chronic fatigue was common.

A total of 23 percent of the subjects reported having experienced the symptom of persistent fatigue sometime during their lives. Chronic fatigue syndrome, however, as defined by the Centers for Disease Control, appeared to be quite rare in the general population. Only 1 of 13,538 people examined was found to meet a diagnosis of the syndrome with an approximation of the CDC criteria. Fatigue symptom complex was frequently related to medical or psychiatric illness or substance abuse; thus, persons meeting partial criteria of chronic fatigue syndrome were also found to be rare when psychiatric or medical exclusions were applied.

 

Comment inTaking exception to chronic fatigue syndrome prevalence findings by Price, et al. [Public Health Rep. 1993]

 

Source: Price RK, North CS, Wessely S, Fraser VJ. Estimating the prevalence of chronic fatigue syndrome and associated symptoms in the community. Public Health Rep. 1992 Sep-Oct;107(5):514-22. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403692/ (Full article)