Date sent: Sun, 21 Jul 2002 Source: Journal of Psychosomatic Research Volume 52, Issue 6, Pages 437-438 Date: June 2002 The English Chief Medical Officer's Working Parties' report on the management of CFS/ME: Significant breakthrough or unsatisfactory compromise? ------------------------------------------------------------------ Michael Sharpe University of Edinburgh, Edinburgh EH10 5HF, Scotland, UK Available online 11 June 2002. Article Outline Chronic Fatigue Syndrome (CFS) has long been a source of controversy. In 1998, the UK Chief Medical Officer took the unusual step of commissioning a special working group to report to him on the most effective methods of treatment and management for this condition. The working group was not the first to report in the UK. The medical profession in the shape of the medical Royal Colleges of Physicians, Psychiatrists and General Practitioners published one in 1996 [5]. This new one was novel in that it was composed of not only medical experts but also patients and representatives of patients' organizations. The committee met a number of times and finally submitted a report that was published in January 2002 (http://www.doh.gov.uk/cmo/cfsmereport/index.htm). What does it say? In fact, many of the recommendations are remarkably uncontroversial. The report calls for good clinical care with partnership with the patient, care commensurate with health needs and involvement of the family. It calls for the provision of appropriate services with primary care supported by appropriate secondary and tertiary services. It also calls for better education of health professionals and more research into all aspects of the condition. Some recommendations are, however, more controversial. The first of these is about a matter as basic as what to call the illness. The term CFS was welcomed by researchers when it was introduced in 1988 as a condition with an operational definition because it helped to get scientific research into the illness onto a scientific footing [4]. The operational definition has been changed [3], but the term CFS retained. However, this term has long been disliked by patients' organizations that regard it as "demeaning" of their illness. The main alternative term widely used by patients organizations in the UK and proposed in this report is Myalgic Encephalomyelitis (ME, or more recently Myalgic Encephalopathy) (http://www.meassociation.org.uk). The term ME was introduced in a Lancet editorial in 1956 to describe an illness that affected the staff at the Royal Free Hospital in London at the time of an epidemic of poliomyelitis [1]. It has subsequently been used by some researchers and many patients' organizations as a term for an illness that is either similar to, or a severe form of, CFS. The report uses both terms but does not recommend one over the other. In fact, it comes down on a compromise term "CFS/ME". Whether this solves the issue of what to call the illness remains to be seen. The second, and associated issue is whether CFS/ME is best regarded as a "medical" or a "psychiatric" illness. This debate is, of course, both pointless (in the sense that such a classification of illness is purely administrative and says nothing about the nature of the illness) and central to much of the dispute about the condition (insofar as psychiatric conditions are often seen as imaginary, mental and a sign of weakness). Again, the report does not take a stand but rather skirts around this issue without (perhaps wisely) making any recommendation. The compromise recommendation is that is management should be by "multidisciplinary" teams. Perhaps the most controversial issue refers to the original brief of the report: the choice of treatment. A systematic review of all relevant randomized treatment trials was commissioned and carried out by the National Health Service Centre for Reviews and Dissemination, University of York, York, England, and published jointly with a parallel American review carried out by the San Antonio evidence-based practice centre in Texas [9]. Despite the increasing number of randomized trials in management strategies for CFS, only the behavioral rehabilitative treatments of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) emerged as having significant empirical support in reasonably high-quality trials. Also presented in the report was a patient survey carried out by one of the patient organizations of their membership. This reported that a substantial minority of the patients who responded felt that these treatments had actually made them worse. This controversy over what treatment to recommend split the committee (both protagonists and antagonists resigned) [8]. The final report compromised by recommending CBT and GET, but giving equal status to a treatment advocated by the patient's organizations called "pacing". The report is not entirely clear what pacing is. It states that "pacing is based on the envelope theory of CFS/ME", which suggests that the patents energy is finite and that the best way for them to manage their illness is to live within this envelope, although, in other parts, the report also talks about pacing as incorporating gradual increases in activity, like CBT and GET. On the one hand, this report is an important step forward [2]. First, it represents a developing and much needed dialogue between patient's organizations (who have often been hostile to psychiatrists being involved in the care of patients with CFS/ME) and those clinicians researchers, mostly psychiatrists who have worked to develop treatments that they hoped would help these patients. Second, there is a consensus that on the present evidence, management of activity is an important aspect of the treatment of CFS. On the other hand, little that was previously controversial has been actually resolved; the conclusions often read as an uneasy compromise. The name CFS/ME symbolizes the fudges adopted regarding the issues of psychiatric care and of the choice of treatment. My own view has long been that the issues around CFS are the same as those surrounding the acceptance and management of the very many patients who suffer conditions that are defined only in terms of symptoms and not dignified by the presence of what we call disease [6]. Consequently, the patients dislike of "psychiatric" names such as somatization and "psychiatric" treatment such as CBT is unfortunate but understandable [7]. All too often, it is implied to patients that symptom-based conditions are psychiatric, in the sense of being "imagined". If this report stimulates the need for clinicians and researchers to work together with patients to overcome misunderstanding and jointly strive to achieve better management of all those with symptom based conditions, it will have been useful. This report also suggests that this process will not always be easy. References 1. Anonymous, A new clinical entity?. Lancet 1 (1956), pp. 789-790. 2. C Clark, D Buchwald, A Macintyre, M Sharpe and S Wessely, Chronic fatigue syndrome: a step towards agreement. Lancet 359 (2002), pp. 97-98. 3. K Fukuda, SE Straus, IB Hickie, M Sharpe, JG Dobbins and A Komaroff, Chronic fatigue syndrome: a comprehensive approach to its definition and management. Ann Intern Med 121 (1994), pp. 953-959. 4. GP Holmes, JE Kaplan, NM Gantz, L KomaroffA, LB Schonberger and SE Straus, Chronic fatigue syndrome: a working case definition. Ann Intern Med 108 (1998), pp. 387-389. 5. Joint Working Party of the Royal Colleges of Physicians Psychiatrists and General Practitioners. Chronic Fatigue Syndrome Royal College of Physicians, London, 1996. 6. K Kroenke, Somatization in primary care: it's time for parity. Gen Hosp Psychiatry 22 (2000), pp. 141-143. 7. M Sharpe and AJ Carson, Unexplained somatic symptoms, functional syndromes, and somatization: do we need a paradigm shift?. Ann Intern Med 134 (2001), pp. 926-930. 8. SE Straus, Caring for patients with chronic fatigue syndrome. Conclusions in CMO's report are shaped by anecdote not evidence. BMJ 324 (2002), pp. 124-125. 9. P Whiting, A Bagnall, A Sowden, JE Cornell, C Mulrow and G Ramirez, Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA, J Am Med Assoc 286 (2001), pp. 1360-1368. -------- (c) 2002 ScienceDirect