Executive Summary

MERGE RESPONSE ON CMO'S WORKING REPORT

Executive Summary

The report of the Chief Medical Officer's Working Group on CFS/ME of January 2002 is an advance on the widely-criticised Joint Royal Colleges report on CFS (1996). It gives an authoritative statement that CFS/ME is a genuine illness which imposes a substantial burden on the health of the UK population, and stresses that improvement of health and social care for people affected by the condition is an urgent challenge.

Importantly, it states that CFS/ME can be clinically recognised for treatment purposes; lists the initial battery of tests that should be performed; and is clear that inaction by healthcare professionals due to ignorance or denial of the condition is not excusable. These, and many more, positive aspects of the report represent progress in terms of recognition of the illness and its consequences. However, for a variety of reasons, the report is inadequate.

Most importantly, the narrowness of the remit, concerned primarily with providing best practice guidance on the healthcare management of the illness, has ensured that the focus is on containment and coping, rather than on solving the clinical conundrum, namely, what actually causes the illness and what steps can be taken to elucidate the cause. The constraint of the remit has several important consequences, some of which are discussed below.

It has permitted the Working Group to side-step the central issue which energises every discussion about CFS/ME. This concerns the diagnostic construct 'CFS' which most probably includes heterogeneous patient groups (one of them with classically-defined ME), limiting the generalisability of any specific management strategy or therapeutic intervention. The question, "what's in a name?", has particular poignancy in the case of this illness: one increasingly plausible answer is "everything" since de facto misdiagnosis not only complicates the interpretation of clinical trial evidence, but obscures treatment options and, in the long run, influences management and practice for the worse. Given that there is a growing number of experts who consider that there is a strong case for unpacking the term 'CFS' and reclassifying and renaming in accordance with more specific clinical criteria, a opportunity for the Working Group to seriously address this issue has been lost.

As the Working Group was concerned with therapeutic management, it sought evidence from a systematic review of forty-four randomised clinical trials on a range of clinical interventions. Two clinical "therapeutic interventions" were identified, cognitive behavioural therapy and graded exercise therapy. By conventional standards of literature reviewing, formal evidence for the use of either in a general patient population is rudimentary, a fact indicated by the authors of the original review. The specific efficacy of neither is convincingly supported by the systematic review evidence, and nor is the pragmatic efficacy supported by survey reports from CFS/ME patients.

As regards cognitive behavioural therapy, five interpretable trials were identified (three "positive" and two "negative"), a less than conclusive evidence base for an intervention which is also non-curative, expensive, beyond the resources of Health Authorities to fund given the scale of the problem, and has been found helpful by only a small minority of patients surveyed by patient organisations.

For graded exercise therapy, only three positive clinical trials were identified, none with a fully comparable control group and all consisting of patients classified by the Oxford criteria which does not diagnose 'ME' or 'CFS (1994)' exclusively. Again, the true usefulness of this therapy to the general population of patients is unclear given that the effectiveness of such motivational interventions is by no means established; that deconditioning may not, in fact, be an important factor limiting the activities of many CFS/ME patients; and that around half of patients surveyed indicated that graded exercise therapy actually worsened their condition. The third recommended intervention, pacing, is intuitively sensible but hardly warrants the status of a separate therapy within a healthcare management program.

Despite part of the remit "to make recommendations for further research," the Working Group has dealt with the research findings in 639 words out of a total of some 34,600 in the main report. A large body of research literature on CFS/ME exists, however, and numerous biological abnormalities have been reported, although the aetiology of the illness remains elusive. By systematically assessing the significance of these, the Working Group may have been able to recommend a specific direction for future research. Instead, the message presented to the media, the public, and opinion formers is that the best that can be done is to manage symptoms, most prominently with psychological strategies.

Interestingly, given the volume of published research evidence on pathophysiological mechanisms, the range of clinical signs and symptoms exhibited by CFS/ME patients, and a large body of professional opinion supporting a 'biomedical' model of the illness, it seems negligent that clinical opinion on the Working Group was proportionately overrepresented by professionals who tend to subscribe to the the use of biopsychosocial interventions for CFS/ME. Since four of their number resigned from the Key Group shortly before publication, after several years of participation, on the grounds that the report paid too little attention to biopsychosocial aspects of the illness, a question is raised about the role of the initial composition of the Working Group in colouring the final report.

At several points, the report mentions the problems of the most severely-ill patients. Yet, a database of information collected and analysed on behalf of severely-ill sufferers by The 25% ME Group, presented to the Working Group, was not used to full advantage in the final report, though other patient data was produced. MERGE's summary of this data shows that 25% of these patients described themselves as bedridden, and 57% had been either housebound or bedridden for more than six years, illustrating in numbers rather than words that morbidity in CFS/ME can be substantial, despite the opinion of many healthcare professionals to the contrary. The management strategies recommended by the Working Group are inappropriate for this group of sufferers whose care remains a neglected challenge.

As regards social care, the Working Group set out to consider how the NHS might best provide care for sufferers. Yet, the NHS is only one agency among many providing care, and the responsibilities of other agencies involved in both care planning and direct service provision could have been usefully identified. Overall, the comforting statements from the Working Group about the services CFS/ME sufferers should receive in the community are little more than aspirations: without the full support and practical backing of local social work departments, sufferers will struggle to see their needs met either fully or appropriately.

Importantly, the report does not describe how or when change is to occur. The Working Party had no executive power and brought no additional funding to stimulate change. Even in its advisory role, it does not evaluate the cost implications of its recommendations, call for directives to be issued to the various health agencies or professional bodies, or propose any mechanism for checking that changes will be made. Crucially, it gives no indication that the illness will be looked at again, in the medium to long term, to assess whether real, meaningful change has come about.

In summary, while the Working Group's report may go some way towards improving recognition of the illness, MERGE considers that it has avoided serious consideration of the important issues surrounding the diagnosis and treatment of ME/CFS; that it has given undue emphasis to management strategies of limited applicability; that practical recommendations for social care provision are lacking; and that, consequently, an opportunity to effect real change has been lost.

NOT AVAILABLE AT PRESENT - View the complete document in pdf format

Download the complete document in Adobe Acrobat (.pdf) format (zipped)