The Editor

Scotsman Publications Ltd

Regent Court

76 West Regent Street

Glasgow G2

9^th January 2004

Dear Sir

Response from the 25% ME Group (Support Group for severe ME Sufferers) to Simon Wessely’s letter to the Scotsman (“Research goes on”) 5^th January 2004

As a patient-led support organisation for severe sufferers of Myalgic Encephalomyelitis (ME), we wish to applaud Margaret Cook’s article which appeared in the Scotsman on 6th Oct 2003 for its forthright honesty in reporting what the patients, carers and families of those suffering with ME had to say about how the illness affects them and how they feel they have been treated (and mistreated) by some parts of the medical profession.

Although Wessely, in his response states that “The evidence shows that the average family doctor is now more understanding and sympathetic to sufferers than before”, from many patients’ experiences, this is actually often not the case, even following the publication of the Chief Medical Officer’s Report on CFS/ME and similar publications.

We feel, it is astonishing that in the 21^st Century the burden remains on the patient to fight to achieve true recognition for the illness that they are suffering from, whatever illness that may be! It seems apparent to us that the medical profession (although saying they are listening to patients) may actually be interpreting what is being said by the patient to their own ends and then dictating forms of “treatment” and “services” for them. At best, they are lumping ME together with other Chronic Fatigue Syndromes and wrongly applying those treatments that may indeed work with some CFS patients but which will not (in the majority of cases) actually be of any benefit to those suffering from ME.

Wessely, in his response in the Scotsman on 5^th January, states “I have been saying for 15 years that this is a real illness, based on my experiences listening to over one thousand patients…” However, based upon a transcript of a lecture given by Wessely on 12^th May 1994 at the 9^th Eliot Slater Memorial Lecture, which has also been highlighted in a separate response to the Scotsman, it is quite evident that he did not always hold such views when he stated at said lecture, “I’m going to talk not about an illness, but about an idea” and further stated that “I will argue that ME is simply a belief, the belief that one has an illness called ME.” This along with many other publications by Wessely et al over the past 15 years, clearly indicates that he does not hold ME to be a real and distinct neurological condition, as accepted by the World Health Organisation ICD10 G 93.3, but rather refers to ME as an “hysterical” condition which merits treatment on a “purely” psychological basis.

He also (along with some other of his fellow researchers) continues to confuse and distort the differences between CFS (Chronic Fatigue Syndrome) and ME. Therefore, rather than dealing with ME as a distinct neurological condition, instead continues to apply to it the umbrella term of CFS (which is a collective term for all types of fatigue conditions, many with a probable underlying psychological basis).

As pointed out by Wessely in his response, it certainly is “a scandal” that there are no, or very few services available for ME sufferers (especially for those who are severely affected by the disease). However, we found it extremely offensive that he chose to express the fact that he and his team in South London had set up a “service” in order to treat CFS and ME sufferers. Unfortunately, the “treatments” currently offered by such “services” to patients with ME, are ones that have clearly been shown by past and present patient reporting (such reports having been ignored by certain elements of the medical profession) to be the most harmful forms of treatment to ME sufferers, especially those who are moderately or severely affected by the illness.

 Many such sufferers who have in the past undertaken these forms of “treatment” whilst they were moderately affected, have since joined our Support Group (for the Severely Affected) because, as a result of such treatments, they have now become wheelchair, house or even bed-bound! Feedback received from our membership, many of whom have used GET (Graded Exercise Therapy) in the past, indicates that 83% were made worse by this treatment and the figures for CBT (Cognitive Behaviour Therapy) were very similar.

Another patient organisation also reported large numbers of ME sufferers being made worse by such forms of treatment.  It therefore seems incredulous that public funds (in the amount of 2.6 million) have been made available in order to test these “treatments” further, despite very disappointing outcomes with regard to previous research studies and patient reporting. Wessely also states “There are now evidence based treatments available, whilst they don’t cure, do make a difference”. This flies in the face of the above and many other research papers showing that this is simply not the case.

In terms of research, we don’t want just “any research” as stated by Wessely in his response. Indeed, we feel the research that is being conducted at present is not the most effective for ME sufferers.  Previous research studies, some of which have been available since the middle of the last century, clearly outline the physical and biological abnormalities caused by this disease. We already have research units like MERGE in Perth, Scotland, and the CFS Research Foundation in England, that are carrying out significant scientific research studies but they are not receiving the public funding required to further such work, but rather we have millions being spent on psychological-based approaches which, in the end, will not unravel the underlying cause of the condition. (This is akin to a sticking plaster being applied to a broken leg!)

From Wessely’s final paragraph, it is quite apparent that he still wishes to denigrate those suffering from ME (even though he expressed in his response that he listens to patients) when he referred to the sufferers and carers who spoke to Dr Cook at the Scottish Cross Party Meeting as “activists” rather than patients who are forced to fight for true recognition of their condition and the suffering that they endure daily, not only caused by the disease itself, but also by the demonization of the condition by certain elements of the medical profession.

It has been expressed in some quarters (even by one of the leading ME support organisations) that such “activists” are actually hindering and demonising doctors such as Wessely and his colleagues, but it should always be remembered that it is the sufferer who has experience of living with this condition and the problems that entails, and it is not the clinician who must endure the stigmatisation which still accompanies this disease.

Yours faithfully

Simon Lawrence

25% ME Group