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The UK CFS/ME Report, 2002

This is an article I wrote for Chameleon, the journal of the ACT ME/CFS Society, in an attempt to present the main facts and issues.

Intro | Consumer involvement | Dissenters | The treatment controversy
The Name | Contrast with the RACP Guidelines
Links to the text of the report, responses and comments.

Introduction

The Report of the Working Party on CFS/ME to the Chief Medical Officer for England and Wales was released on 11 January 2002. In the Foreword, the chair of the Working Party states that CFS/ME "can, and should, be approached and managed clinically like any other chronic illness". He talks of "improving care" for patients, and says "There is much to do".

Headlines in the British and Irish press encapsulate a key message of the "CMO's Report":

"Doctors told they must take ME seriously" - Daily Telegraph
"ME recognised as chronic condition " - Guardian
"Yuppie flu' is recognised as a real illness" - Times
"ME is not all in mind, say experts" - Irish Independent

However the report not only states that CFS/ME is "a genuine illness" (as indeed the Australian Guidelines do) but also acknowledges the recent research evidence of physiological abnormalities. It recognises two groups of sufferers whose needs have been neglected - children and the severely affected. The needs of carers and people of ethnic background are also acknowledged. The report expresses concerns about lack of understanding amongst professionals and the public, not enough good quality research, too few services, and the length of time taken to get a diagnosis. Its recommendations are aimed at improving health and support services through professional education and better planning. There are also specific recommendations about research.

Unlike the Australian guidelines, the "CMO's Report" has been generally well received by consumers (though there were dissenters: see below). The larger patient groups in particular welcomed its key findings. The ME Association said, "This is really a wake-up call for the medical profession." Action for ME (AFME) described its publication as "potentially the most significant event to date in the field." The Association for Young People with ME (AYME) called it "a huge step forward" and said: "We believe that the report is open, honest and fair and that its recommendations will provide a sound basis of care for all sufferers".

Consumer involvement

There was considerable community consultation in the preparation of this report, with all the main consumer organisations in the UK taking part. Patient representatives on the Key Group were from AFME, BRAME, the ME Association, and the 25% Group; there were also two independent patient reps, and a carer. A separate Children's Group also included reps from AYME and The TYMES Trust, and there were more patients and carers on the Reference Group.

Two large "Sounding Board" discussions - one for affected children and their parents, the other for adult sufferers - were held to gather community views, and the Working Party also examined surveys and other material submitted by the consumer organisations. The report devotes a whole chapter to evidence from patients and their carers.

"Having worked within the NHS and voluntary health sector for 30 years this has been the most inclusive process that I have seen," commented Chris Clark, Chief Executive of Action for M.E. and Key Group member in the British Medical Journal (2002;324 -19 January)

Dissenters

Predictably, the process was not without controversy. Six Key Group members withdrew shortly before the report was to be released, refusing to sign off on its findings. "Two psychiatrists, a public health doctor, and a nurse therapist have resigned, saying that the report plays down the psychological and social aspects of the condition and concentrates on a medical model," said a news item in the British Medical Journal. These four, proponents of the "Wessely school" (two were colleagues of Professor Simon Wessely at King's College Hospital) felt the report was too subjective and not evidence-based enough. They objected to the inclusion of "pacing" among possible treatments due to lack of supporting research (BMJ 2002;324:7 - 5 January). By implication, they also disapproved of patients' and doctors' experience being cited as evidence in addition to, or instead of, research data.

Two of the patient members of the Key Group - Tanya Harrison who started the BRAME (Blue Ribbon for the Awareness of ME) movement, and Simon Lawrence of the 25% ME Group, representing people with severe illness - also refused to endorse the report. Lawrence said he couldn't agree to its inclusion of cognitive behaviour therapy and graded exercise. "Many of our patients are severely affected because they have tried these types of treatments," he said (BMJ 2002;324:131 -19 January)

These were just the latest events in a history of controversy and disagreement. In May 2001, Malcolm Hooper of the University of Sunderland circulated a document by "Sally Montague" (a pseudonym for a group of consumer advocates) voicing concerns that due to the influence of the "Wessely school" the report would focus too much on the biopsychosocial - or "psychiatric"- model of the illness and overlook physical research findings.

Indeed there was widespread pessimism among consumer advocates about the outcome, based on what had gone before (for example, the 1996 Royal Colleges Report, which Dr Charles Shepherd had described as "far too biased towards the psychological aspects of the illness"). There was concern about the number of known proponents of "psychiatric" theories on the Working Party, and also about the funding the project was receiving from the Linbury Trust, noted for its generous financial support of Wessely and his colleagues.

Whether these fears were realised is a matter of opinion; however the fact that Wessely and his colleagues are far from satisfied with the result indicates that they were unable to influence the proceedings as much as they would have liked.

The treatment controversy

Ideas about treatment reflect underlying theories about the cause of CFS/ME. Psychiatrists and others who embrace the biopsychosocial model favour graded exercise therapy (GET) and cognitive behavioural therapy (CBT), claiming research findings support their effectiveness. Most patients and consumer groups, however, strongly reject GET and CBT, maintaining they don't take account of the realities of the illness, and that the research evidence is flawed and incomplete.

The CMO's Report steers clear of recommending any particular treatment outright. The recommendations relating to treatment are fairly general, concerning appropriate care and support. They stress that management should be in partnership with the patient and tailored to their needs and circumstances (6.2 Treatment and Care).

In the chapter on management, GET and CBT are listed among possible treatments but pacing (preferred by consumer groups) is also included. The report canvasses the pros and cons of GET and CBT, acknowledging consumer concerns, and pointing out problems with the research. It concludes that "appropriately supervised, graded exercise therapy . . . can benefit many, though not all, ambulant patients" but also draws attention to the high proportion of negative reports on GET from patients (4.4.2.1). Cognitive behavioural therapy is described as "helpful in improving quality of life and day to day functioning" (4.4.2.2), in contrast to the way it is portrayed by some writers, as a cure-all corrective therapy for the wrong thinking that has caused the illness. The report also points out that most approaches have not been sufficiently studied in the severely affected (4.4.1.1).

The Name

The Working Party noted that there is work going on in the USA on a name change, and decided on CFS/ME as an "umbrella term" rather than choose between CFS and ME. This is a sore point with some patient advocates, who believe that the definition of Myalgic Encephalitis as a separate disease has already been established, and object to the various case definitions of 'Chronic Fatigue Syndrome' as being too inclusive and tainted by association with psychiatric theories of causation. Meanwhile comments by doctors of the "Wessely School," which does not believe in ME, portray the use of the double name ME/CFS as evidence of the capitulation of the Working Party to the delusions of the patient lobby.

Contrast with the RACP Guidelines

The impression I get from reading the "CMO's Report" is that it was a very genuine effort to cover all the ground. It is - in my opinion - far superior to the Australian Guidelines not only in its contents but also in several other respects:

It is well written and organised, and appears to have been thoroughly researched. The project was well resourced with an editorial team of five people and a secretariat of eight. The Australian Guidelines had a secretariat of one or two, and was as far as we know written or compiled by one person, Dr Rob Loblay.

There were several different groups involved including a large Reference Group with wide representation - not just doctors and patients but also carers, health workers, and people from support services. The Australian working group had just one consumer representative, and the attention paid to his contribution left much to be desired.

The report bases much of its discussion about treatment on patient reports and doctors' clinical experience, citing lack of suitable research evidence as justification (1.3.3). This is in contrast to the Australian Guidelines, which take an evidence-based approach relying heavily on the results of a limited number of controlled research studies.

Brian Dow of the patient organisation Action for ME (AFME) said: "This report is not perfect - there would be certain things here and there that we would have put differently. However, in terms of a platform to build on, I can honestly say that the status and official recognition given to M.E. in the UK is on a totally different plane to the one it occupied last week and for that reason we ought to be celebrating" (letter to Co-Cure mailing list, 15 Jan 2002).

Moira Smith
January 2002