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Countess of Mar's address in the House of Lords,  Jan 22, 2004

Some of Wessely's studies and trials are known to be seriously flawed and his claims have been described in the British Medical Journal by Angela Kennedy, lecturer in social science, as,

"unfortunately incomprehensible, incoherent, and empirically inadequate".

Wessely's response is that those who disagree with him are "radicals" who are fighting for a "lost cause" with "lies and gross distortion". Such is that man's influence that, when faced with ME patients, clinicians now collude with each other to ensure that patients receive no investigations, support, treatment, benefits or care—in fact, nothing at all. Patients are effectively abandoned. They have been badly let down by their main charity, Action for M.E. It is now supporting the Wessely "management" programme and is, I see, to be actively involved in the development of the new treatment centres. I have serious reservations about the activities of that organisation, but now is not the time to air them.

Wessely has, rightly, been compared with Professor Sir Roy Meadow, who is currently in the news. He has stated that children do not get ME. When confronted by a child with ME, medical practitioners, social workers, teachers, policemen and lawyers have all been conditioned by Wessely and his like-minded colleagues to believe that the illness has been fabricated by the child's mother.

I need not elaborate on the consequences of the scenario. Press reports are currently full of heartbreaking histories—histories that I have been hearing and seeing for years, and which successive Ministers have refused to investigate properly.

I am pleased that the noble Lord, Lord Turnburg, has put his name down to speak. I wonder whether he can recall just how many times ME sufferers or their carers wrote to him while he was president of the Royal College of Physicians, asking him to withdraw the notorious document, the Joint Royal Colleges' report on CFS published in October 1996. That was internationally acknowledged to be biased and flawed.

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I wonder whether the noble Lord recalls some of his responses. Is it still the case that "We will have to agree to differ" and that "It is helpful continually to return to areas of disagreement which can only perpetuate polarised views"? Will the noble Lord explain why those with ME are banned for life from being blood donors, when those with psychiatric disorders are not? Will the Minister ensure that the newly produced second edition of the WHO Guide to Mental Health in Primary Care is withdrawn from circulation until it can be reprinted without ME/CFS listed as a mental disorder, given that the Department of Health accepts that it is not? Will he also ask the Chief Medical Officer, as a matter of urgency, to circulate to all medical practitioners and the NHS information authority the correct classification for ME/CFS and to withdraw the current advice?

1.50 p.m.

Lord Turnberg: My Lords, I am most grateful to the noble Countess, Lady Mar, for introducing this important topic. I am afraid that we must continue to disagree. I can answer directly her question about the response some years ago to the report by the Royal College of Physicians on CFS/ME. We had few, if any, adverse comments. In fact, as a result of the report, I was asked to write the foreword to a patients' advice booklet by a CFS/ME patient group, so the report received a favourable response in some quarters at least.

It is an unfortunate fact that, despite a lot of research and speculation, we do not yet know the cause or causes of chronic fatigue syndrome or myalgic encephalomyelitis—I hope that noble Lords will not mind if I call it CFS/ME. But the important point is that, whatever the cause, there is no doubt that it is a serious and debilitating disorder, and patients suffer severely from it. I am sure that the noble Countess, Lady Mar, will agree with that, at least.

CFS/ME is not alone in being baffling. We do not know the cause of most cancers and many inflammatory diseases, from arthritis to colitis, from asthma to Alzheimer's, but that lack of knowledge has not stopped us seeking the best forms of treatment that we can muster. Indeed, many of those diseases are treated well, and some are cured, although we do not know the cause. But we seem to have got ourselves into a semantic argument that, to all intents and purposes, is irrelevant to what patients need and want. They want treatment and cure, and need more research into potential causes so that more accurate diagnoses can be made and better treatments developed. Meanwhile, they want the best treatments currently available.

In the old days, when we did not know the cause of a disease, we named it after a doctor or patient—for example, Parkinson's disease or Crohn's disease. If noble Lords will forgive me, I am reminded of the story of the little boy who, when asked what his dog's name was, replied, "I do not know his name, but we call him Rover". Perhaps we would do better to call CFS/ME "Mar's disease" or even "Wessely's disease". As we do not know the cause, I prefer to refer to it as chronic

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fatigue syndrome, because at least the term describes how patients feel. Myalgic encephalomyelitis suggests that there is an inflammation of the brain, when there is no evidence that patients' brains are any more inflamed than anyone else's. I certainly would not focus any arguments on the issue. Indeed, most authorities now seem content with the term CFS/ME—sitting on the fence. Be that as it may, most of those in the field who have studied the disease agree that, as with every other illness, there is likely to be a mixture of physical and psychological disturbances. To deny that patients may be depressed when they have a chronic long-term debilitating illness seems to fly in the face of experience. Just as it would be unwarranted to deny a depressed patient with cancer or rheumatoid arthritis an anti-depressant, so it would be unwarranted to deny an anti-depressant to a patient with CFS/ME who is also depressed. It is quite different from suggesting that depression is the cause, because it clearly is not.

I hope that noble Lords will forgive me for going on about the issue, but there is a tendency to believe that it is somehow a betrayal of patients even to admit a psychiatric component in the suffering of patients with CFS/ME. I cannot subscribe to that view because I know that there is always a psychological component in every illness, even if it is only a response to that illness. That is not to deny that there may be physical components in CFS/ME—almost certainly there is—but the problem is that, at present, we do not know what it is, or what they are. Efforts to uncover an inflammatory, infective or immunological cause have given tempting glimpses, but nothing clear has emerged. Clearly, more research is needed. Perhaps equally unfortunately, no new treatments based purely on those types of possible causes, and that make any difference, have emerged. Antibiotics, antivirals, vitamins, supplements, anti-inflammatory drugs and even steroids do nothing unless they are specifically indicated.

Despite anecdotes to the contrary, I am afraid that the only treatments that have shown any benefit in large-scale carefully controlled clinical trials are: cognitive behaviour therapy, which involves a careful, encouraging confidence-building effort with slowly increasing exercise based on what patients can achieve, without symptoms at the time; and antidepressants, if the patient is also depressed—it is no wonder that many are. Those are currently the only treatments shown to be effective. Many—but, unfortunately, not all—patients are helped by that approach.

It so happens that Professor Simon Wessely and his colleagues, whom the noble Countess denigrated so mercilessly, have led the field in that form of therapy. I have the greatest respect for the noble Countess, but on this matter I must disagree profoundly with her. Rather than doing a disservice to patients, Wessely is doing them an enormous service and has devoted much of his life to caring for them. That is why large numbers of patients flock to his clinic, probably the largest in the UK, from all over the country in the hope that he might be able to help them, and he often does. He is the first to admit, as he does in his many writings

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on the subject, that treatment for those unfortunate patients is difficult and imperfect, and that not everyone is helped, but enough are to make it worthwhile. Until something better comes along, that is the treatment of choice. Wessely set up the first NHS clinic and service devoted solely to CFS/ME patients and has been active in service developments ever since. The NHS Centre for Previews and Dissemination and the Cochrane Centre have endorsed his approach as best current practice, as have American reviewers. Furthermore, the largest patients' charity, Action for ME, is working closely with Wessely and his colleagues on new research initiatives funded by the MRC and the NHS. He has been given a research medal by the Royal College of Physicians for his work on the disease and a commendation in the last research assessment exercise. He published the first evidence of neuroendocrine abnormalities that clearly differentiate CFS/ME patients from those with straightforward depression. He is busily engaged in a research programme into the biochemistry, immunology and neuro-imaging of those patients. That does not sound to me like someone who either denies the existence of the disease or believes that it is all in the mind—surprisingly, it is something of which he is accused. Wessely's articles in prestigious journals such as the Lancet strongly attest to his view that both the physical and psychological components of the illness are important. This is a man absolutely committed to caring for those patients, and if anyone came up with new or better treatment I am sure that he would grab it with both hands.

The noble Countess's Question focuses on how the condition should be described. I hope that I have said enough to suggest that it is rather more important to be concerned that more research is carried out into the cause of this distressing condition, whatever it is called, and that meanwhile we should treat it as best we can.

1.58 p.m.

Lord Colwyn: My Lords, I, too, thank the noble Countess for introducing this subject. I hope that I will not waste the House's time. Having listened to the debate so far, I have an awful feeling that perhaps I will be a little controversial. I am delighted to hear that the noble Lord, Lord Walton of Detchant, may speak in the gap—no doubt, he will tell me whether I am right or wrong on that. I do not know the answer to the question that the noble Countess asks. Perhaps the Minister could pre-empt the debate by saying "Yes", but I do not know what he will say. I wish briefly to support the concept that ME is a neurological disease and should be classed as such.

We have heard that ME is a chronic, disabling illness, which affects 100,000 or more people in the UK. The noble Countess said that it was recognised by the World Health Organisation in 1969. I thought that it was more recently than that that the WHO classified it and recognised it as a disease of the nervous system.

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