Chronic Fatigue Syndrome: Analysis of the British Report of the CFS/ME Working Group

1. Background
2. Methodology
3. Recommendations of the Working Group
4. Preferred Management Strategies
5. UK Government Response
6. Interpretation and Commentary

 

Background

In 1998, the Chief Medical Officer of the United Kingdom Department of Health commissioned an independent Working Group to review current practice and to develop clinical guidelines for National Health Service (NHS) management of chronic fatigue syndrome (CFS), alternately termed myalgic encephalomyelitis (ME).1 The Working Group consisted of more than 80 members of diverse backgrounds: physicians (generalists and specialists), other health care professionals, patients, patient advocates, and Department of Health professionals. A major priority was to incorporate the views of CFS patients and their families and caregivers into the report and final recommendations.

The definition of chronic fatigue syndrome is still under debate. Various guidelines exist for the diagnosis of CFS. The revised case definition from the U.S. Centers for Disease Control (CDC) permits the diagnosis in patients with a minimum of six months of unexplained fatigue (of new or recent onset) that "is not substantially alleviated by rest and results in substantial reduction in previous activities," and that occurs in concert with four or more commonly encountered symptoms including: "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."[1]

Methodology

The Working Group's initial goal was exploratory: to define illness impact and approaches to treatment from both the patients' and health service's perspectives. It was clear at the outset that research evidence was either not rigorous or lacking altogether. Much of the advice on therapeutic interventions was based on what was termed a "systematic review of management strategies."[2] Guidelines were formulated by incorporating available research findings, the qualitative experience of patients, and the broader clinical opinions of health practitioners. In particular, patient opinion was solicited at "sounding board" events and through surveys administered by major patient advocacy groups. The report focuses on the nature and impact of CFS/ME, the current management of CSF/ME, and specific issues of CFS/ME in children and young people.

Recommendations of the Working Group

The Working Group report highlights specific concerns: that patients and caregivers often encounter both a lack of understanding from healthcare professionals and unreasonable difficulty in obtaining a diagnosis; that there is evidence of under-provision of treatment and care, with inconsistent service delivery across the UK; and that there is a "paucity of good research evidence and little research investment" for a serious clinical problem that has a pervasive impact on the individual and community. The report identifies measures that "should be taken with some urgency" to address the current situation.

1. Recognition and definition of the illness:
   • NHS and healthcare professionals should recognize CFS/ME as a chronic illness.
2. Treatment and care:
   • Patients of all ages must receive treatment and care commensurate with their health needs.
   • Healthcare professionals should have sufficient awareness, understanding, and knowledge of the illness to enable them to diagnose, manage, and support the patient with CFS/ME.
   • Management should be undertaken as a partnership with the patient, and support should extend to the patient's family and caregivers.
3. Health service planning:
   • Establishment of service networks and local provision of care.
   • Access to care for patients who are housebound or bed-bound.
4. Education and awareness:
   • Training of doctors, nurses, and other healthcare professionals should include CFS/ME. They should receive postgraduate education and training.
   • Physicians and healthcare professionals must consider CFS as part of a differential diagnosis, and increase awareness and understanding among the general public.
5. Research:
   • "A program of research on all aspects of CFS/ME is required, including health-services research, epidemiology, behavioral and social science, clinical research and trials, and basic science."

Preferred Management Strategies

The Working Group report endorses three therapeutic strategies:

1. Graded exercise/activity progression:
   Gradual but progressive increases in aerobic activities, such as walking or swimming.
2. Cognitive behavioral therapy:
   "Re-enablement," or empowerment of patients to identify, understand, and modify their belief systems and behaviors with support and guidance from a therapist.
3. Pacing:
   Energy management strategy in which patients are encouraged to "achieve an appropriate balance between rest and activity," that is, to "live within the envelope of finite energy."

UK Government Response

"The Department of Health welcomes the publication of this report as the start of a process of understanding that we hope will lead to improved diagnosis, management and treatment." The Department of Health endorses "the view… that there should be no doubt this is a chronic illness," that "health and social care professionals should recognize it as such," and "the need for more research," and has asked the Medical Research Council to "develop a broad strategy for advancing biomedical and health services research." The Department of Health agrees that "management of CFS should take place in partnership with patient/family."[3]

Interpretation and Commentary

The CFS/ME Working Group report acknowledges broad areas of disagreement among its members - not surprising, given the huge task of integrating many opinions in a controversial area of healthcare. This report represents a tremendous undertaking. Particular strengths are the strong validation of the diagnosis of CFS/ME, the inclusion of diverse members' opinions, and the attempts to address social, psychological, medical, and health service concerns. There is a much-needed emphasis on the need to move forward in CFS/ME and to treat the disease, despite the current poor understanding of etiology and pathogenesis.

The very strengths of the report, however, highlight the most obvious shortcoming: it is not possible to please all of the people all of the time. Publication of the report was delayed by several weeks, presumably because of difficulty in agreement among members, and several members (including both medical professionals and patients) did not sign the final draft. Despite the best intentions, it may have been overly ambitious to try to address this illness from all perspectives. The recommended therapies were chosen at least partly on the basis of patient preference, which cannot really be compared to or analyzed with randomized controlled trials. In particular, the endorsement of "pacing" is particularly controversial: apparently no clinical trial clearly supports its utility in CFS/ME. (Indeed, to someone unfamiliar with the concept, it does sound more like common sense from a relative or friend than medical therapy from one's physician). A role for or data regarding potential biomedical therapy is not addressed.

It is important for U.S. physicians to put this report in proper perspective: it is more a validation for the British NHS of the existence of CFS/ME and the need for greater services and research than it is a source of guidance for the individual physician. Indeed, the value lies more in the social and political realm than in the area of direct administration of patient care.

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posted 1/3/2002

[1] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff AL, and the International Chronic Fatigue Syndrome Study Group. The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study. Annals of Internal Medicine, Vol. 121, December 15, 1994, pp. 953-959. [Abridged versions of the definition, the complete original article, as well as advice treatment, support groups, research, and publications are available at http://www.cdc.gov/ncidod/diseases/cfs/defined/defined2.htm.]

[2] A Report of the CFS/ME Working Group. Department of Health, UK Online. 2002 Jan 11 http://www.doh.gov.uk/cmo/cfsmereport/index.htm [An online summary of the report, as well as access to a PDF file of the full report, is available at this URL. - Ed]

[3] Government Response to the CFS/ME independent Working Group's Report. Department of Health, UK Online. 2002 Jan11. [A PDF file of the response is available at the same URL. - Ed.]|