The Countess of Mar - Critique of the Chief Medical Officer's Report

The Countess of Mar rose to ask Her Majesty's Government what is their response to the report to the Chief Medical Officer of an independent working group on chronic fatigue syndrome/myalgic encephalomyelitis dated January 2002.

The noble Countess said: My Lords, in view of the publication in the British Medical Journal of 13th April 2002 of its survey of so-called "non-diseases" and the prominence given by the press to chronic fatigue syndrome/myalgic encephalomyelitis as a non-disease, this debate has come at a very appropriate moment. I declare an interest in that I am patron of several ME charities.

On 11th January 2002, the Chief Medical Officer is reported as saying that CFS/MS should be classified as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease". His choice of MS as an example is apt in view of the fact that this disease used to be known as "the idle man's disease". Like ME now, MS was dismissed as hysteria by some practitioners. The report contains the acknowledgement that, "CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population".

I shall be characteristically blunt. Since 1969 ME has been formally classified by the World Health Organisation as a neurological disorder. The WHO has confirmed that it has no plans to reclassify it as a psychiatric condition in the next international classification of diseases revision which is due in 2003. However, since 1987 Dr (now Professor) Simon Wessely has been relentless in his proposition that ME does not exist. For example, in the journal of psychological medicine in 1990 he claimed that ME exists only because well-meaning doctors have not learned to deal effectively with what he called "suggestible patients".

I have mentioned the article about non-diseases in the British Medical Journal of 13th April. I refer the Minister to a letter in the same journal, headed: "What do you think is a non-disease? Pros and cons of medicalisation". It is signed by Simon Wessely, Professor. Only 570 out of more than 30,000 doctors voted on a list of some 200 so-called non-diseases drawn up by the BMJ. Only 72 doctors voted for CFS/ME, while 251 voted for ageing. Wessely has chosen to highlight CFS/ME in his letter and, of course, the press picked it up.

I feel truly sorry for the Chief Medical Officer. He is trying to do his best and is thwarted at every turn. It is extraordinary that this man and his group of followers, colloquially known as the Wessely school, have been allowed to dominate all debate on ME for 15 years. They have unquestionably been responsible for a relentless and sustained attack on the credibility of an increasing number of severely ill patients, dismissing and trivialising their suffering.

As Nero fiddled while Rome burned, so the Wessely school fiddles the facts while people suffer and die. When Wessely's work is legitimately criticised by colleagues and his methodological flaws pointed out, he blames his peer reviewers for allowing his own errors to be published. Wessely is responsible for the accuracy, honesty, impartiality, quality and scientific integrity of the research which he has published.

There are many documented instances in which he is in direct conflict with other competent medical opinion. His tactics include manipulation, distortion, invention, misquotation, suppression, exploiting public ignorance and deliberately constructing his presentations to fit his audience. Rather than his having orchestrated a campaign against patients and their credibility, he claims it is patients who are orchestrating a campaign of vilification against him.

Professor Wessely seems to have taken it upon himself to reclassify ME as a mental disorder in the WHO Guide to Mental Health in Primary Care in his capacity as a member of the UK WHO Collaborating Centre for Research and Training for Mental Health. He has disingenuously amalgamated his own definition of chronic fatigue syndrome with ME by stating that ME may be referred to as CFS and is thus, he claims, a mental disorder.

The report concedes that there is huge confusion surrounding terminology. In reality it is simple. In 1992, the WHO included the term CFS as one by which ME is sometimes known, and indeed many international researchers now refer to ME as CFS. The patients whom they are studying resemble those with neurological illness. There is a long established acceptance that such patients are severely physically ill. However, since 1991, Wessely and his colleagues have been responsible for producing their own criteria for CFS, known as the Oxford criteria. They dropped all reference to physical signs. Physical symptoms suddenly became behavioural in origin as opposed to organic.

Simon Wessely and, in particular, Michael Sharpe, Anthony David, and Peter White-all psychiatrists-proceeded systematically to flood the UK literature with their own beliefs about the non-existence of ME. They commandeered medical journals and the media. They became self-designated experts in medically unexplained symptoms such as ME, Gulf War syndrome, and multiple chemical sensitivity. They have received disproportionate funding, amounting to over £5 million, for research into their own beliefs to the exclusion of virtually all research into organic causes.

Their influence pervades every aspect of ME sufferers' lives, including their ability to obtain social security and private medical insurance benefits, social services assistance and home tuition for children. Tragically, children with ME have suffered disproportionately. As I have already explained, the prevailing perception of the illness is that it is bio-psychosocial, whatever that means. Children presenting ill-defined symptoms that do not improve quickly are regarded as having been harmed by their carer. Proceedings under the Children Act 1989 are instigated. Children are removed from loving families and made wards of court and severe gagging orders are placed on parents. The Minister knows of my concerns in the field and I should be grateful if he would tell me what progress is being made with the inquiry by the Social Services Inspectorate into the cases that I have passed to his honourable friend, the Minister for Public Health.

My Lords, the influence of Wessely is clearly manifest in the report to the Chief Medical Officer. Not only is the terminology ambiguous and confusing, it specifically advises that vital investigations such as immunological and nuclear medicine scans are inappropriate and unnecessary. Those are the two areas which are delivering hard evidence of organic pathology and are the focus of intense investigations in the United States. How does such a report help patients? The answer is that it does not. I make no apology for having dealt with the Wessely problem at length.

It was the brief of the working group to "develop good clinical practice guidance on the healthcare management of CFS/ME for NHS professionals". Its report advises healthcare professionals that, "inaction due to ignorance or denial of the condition is not excusable".

In fact, the report's effect will be to compound inaction, ignorance and even denial: inaction in not investigating the patient's illness or not providing any treatment-management is not the same as treatment-ignorance by promoting inappropriate and possibly harmful interventions; and denial of the true nature of ME.

When it supposedly advises clinicians how to put its recommendations into action, the report's own authority is undermined by the fundamental disagreement about the recommended management benefits. Having highlighted the controversy and conflicting opinion about cognitive behaviour therapy (CBT) and graded exercises, the report's most serious flaw is that it offers no explanation or advice as to how health professionals decide whether a patient will benefit from or be harmed by the recommended management regime. Thus, by virtue of the conflicting opinions on risks and benefits set out in the report, the NHS exposes itself to the risk of treating patients unlawfully. Will the Minister please explain how that can be "good clinical practice" and why such flawed advice got through the scrutiny net?

The scientific evidence is that, at best, a total of between 22 and 28 people with CFS and no psychiatric illness have derived limited benefit from CBT-nine of them in just two trials. None of the trials studied those with ME who were severely affected or children. Professor Friedberg of State University, New York, says that, for those CFS individuals who do not have psychologically mediated reductions in inactivity, such a directed approach as CBT would be inappropriate and counterproductive.

Is the Minister happy to rely on such manipulation of the scientific evidence as appears in the report? Does he endorse management recommendations for patients with ME who do not have psychiatric illness that have been extrapolated from findings of studies on patients with a psychiatric diagnosis? Is the Minister aware that the organisers of a workshop and conference to take place at the John Radcliffe Hospital in Oxford on 18th April, entitled "Chronic Fatigue Syndrome: Research and Practice", state:

"The recent government guidelines have endorsed the value of CBT and graded exercise as the most useful patient management approach so far".

That is an outrageous example of distortion of the facts and, as the seriously affected and children were excluded from the report, it is dangerous and irresponsible. Does the Minister endorse the claim by Wessely and his colleagues that ME/CFS is a mental health disorder? Is it Department of Health policy to lump together chronic fatigue with ICD-classified chronic fatigue syndrome?

Many of those who are severely affected feel let down by the apparent capitulation of the two major ME charities, which appear to accept the bio-psychosocial model of ME/CFS. The ME Research Group for Education and Support, MERGE, one of the charities of which I am patron, has given a cautious welcome to the report. It states:

"While the 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 are lacking and that, consequently, an opportunity has been lost".

The charity was started in 2000 by Dr Vance Spence, who is senior research fellow in medicine at Dundee University, and Robert McRae, a banker. They are both ME sufferers who have had to retire early, but Dr Spence is able to do limited research. He has already established that there is significant disruption to the biology of blood vessels and also to particular circulating white blood cells in patients with ME. That is significant because the results establish a biological mechanism for ME symptoms and unequivocally refute the dominant psychosocial explanations.

In their response that accompanied the report, the Government have handed responsibility for research to the Medical Research Council. May we know who has been appointed to the independent scientific advisory group? May I also have an assurance from the Minister that psychiatrists will not dominate the group, as they have done hitherto, and that there will be a reasonable balance of funding for biological research?

7.40 p.m. Lord Clement-Jones: My Lords, I congratulate the noble Countess, Lady Mar, on initiating today's debate. I listened to her with considerable interest. I recognise the great strength of her feelings on the matter and her particular interest in the area. I declare an interest as a patron of the Tymes Trust, which supports children and young people with ME. It has an advice line that is manned by trained people with personal experience of the illness. Training days are run for various professionals, and the trust operates a professionals referrals service that enables doctors, teachers and others to consult ME specialists.

I became interested in ME more than 20 years ago when a close family member contracted the illness after having glandular fever. In those days, we had no idea what ME was. Over 20 years ago, there was some excuse for that, but now there is little excuse, least of all for members of the medical profession. ME is a serious illness, with no known cure. It has taken many years for that to be properly recognised. The illness has a profound effect on individuals and on entire families. In this country, it affects up to 25,000 children and, it is estimated, between 100,000 and 300,000 adults. Fifty per cent of long-term sickness absence from schools is attributable to ME. The cost of the illness is estimated at £4 billion.

I want to look forward from the chief officer's report. I will not dwell on the past in the same way as the noble Baroness did. I agree that Professor Wesley has not played a particularly glorious part in the controversy over ME, or indeed in that over Gulf War syndrome. However, I take a more positive view of the chief officer's report than the noble Baroness.

In 1998, the Chief Medical Officer set up a working party to examine the treatment and management of the illness. The document was published this year by the Department of Health. Despite the controversy-in a sense, the final outcome and the resignations may have been a good thing-and the year-long delay, the report came as a relief to sufferers. The new recommendations offer a major opportunity for change in the way that young people, in particular, are treated, supported and educated. The report acknowledges the disabling nature of the illness and the severe limitations that it can impose. It recognises the need for proper, multi-disciplinary assessment at the outset, so that a flexible treatment plan can be created.

The report was described by Val Hockey, the chief executive of the ME Association, as a wake-up call for the entire medical profession. I commend the chairman of the working group, Professor Allen Hutchinson, and the CMO on the outcome. It is also a testimony to doughty campaigners such as the noble Baroness, Esther Rantzen and all the voluntary organisations associated with ME, particularly Action for ME and the ME Association. We can look back at reports such as the 1996 report from the Royal Colleges of Psychiatrists, Physicians and General Practitioners as rather quaint anachronisms. It is a sign of the times that the Health Minister, Yvette Cooper, in an interview in Tymes magazine, published by the Tymes Trust, can be open and frank about how she suffered and recovered from ME in her early 20s. That was a terrific interview, and I told her so yesterday. Many questions arise from the work of the CMO's working group. First, there is the issue of training for doctors. Some recent articles written by doctors in the wake of the report are absolutely disgraceful and ignorant. I feel strongly about some of those reactive reports, and I shall also come later to the related issue of false allegations, which are relevant in this context. Often, such allegations arise from professional ignorance or, in some cases, sheer bloody-mindedness. We also had officials engaging in covert surveillance of people with ME. There are social workers and education officials who do not understand the condition. All those others need training. The department must say what plans it has. We need good practice guidance for social workers and other professionals, not just for doctors.

In February, I asked the Minister about the aftermath of the report. In particular, I asked how the Government planned to disseminate the findings and recommendations of the CMO's working group. The Minister replied that it would be put on the website and that there would be a report and summary for clinicians. He said that the Government might even consider NICE guidelines. We must be clearer than that.

The crux of the matter is that we cannot go on with a situation in which we have a report that, in many ways, acknowledges the condition and suggests how the treatment options should be taken forward without making certain that the report is taken seriously. Incidentally, I part company with the noble Baroness about the treatment options. They are options, and the report is not over-prescriptive about that. NICE guidance will be crucial, and I hope that, in the weeks between the date of my Written Question and today's debate, the department has considered whether such guidance will be commissioned. The department must proactively disseminate best practice.

I also asked what funding would be available for research. The Minister replied that the department had commissioned research into the diagnosis and treatment of CFS/ME and said that details were available on the national research register. He said that the department had asked the MRC to develop a broad strategy for advancing biomedical and health services research into CFS/ME. I welcome that, so far as it goes, but we need something concrete. We need a budget, and we need to know that the MRC intends to assemble a set of research proposals and put it out to tender, in a sense, to research bodies. That is extremely important. I would like the Minister to give us a progress report.

There are other issues. Will the Government change the incapacity benefit handbook for medical service doctors? It is written for doctors who provide advice to Benefits Agency adjudication officers in relation to incapacity benefits. I do not know the status of the handbook, and I do not know what it says now, but previous versions stated that there was no firm evidence to suggest that ME was a distinct entity from other forms of chronic fatigue syndrome. Nor was there firm evidence that CFS was a physical disease. I hope that the department will instigate a cross-governmental review to make sure that such statements, relating to benefits administered by other departments, will be changed.

The issue of expert patients is important. The report emphasises how important it is that patients who have suffered-or are suffering-from ME are consulted about management and treatment. It is important that there should be such ongoing involvement, and I would like to hear what the Minister has to say on the subject.

In our debate last October, we heard about false allegations. I am sure that all of us have heard terrible examples of how parents of children with ME have been accused of abusing their children or allowing them to play truant. Parents have been diagnosed as having Munchausen's syndrome by proxy, and children have been put on the at-risk register. There have been secret case conferences and so on.

Last October we debated the issue of child abuse and discussed the guidance issued for consultation on children in whom illness is induced or fabricated by careers with parenting responsibilities. At that time, the guidance was in draft form and was out for consultation.

Can the Minister say what is the current status of that guidance? It is extremely relevant in the case of ME because so many parents of children with ME have had problems with the authorities in this respect. Will it recognise the issue of ME and possible false allegations? It is vital that it does. Enough injustice has been done over many years. Stigmas are created which take years to expunge, let alone recovering from the emotional upheaval involved.

I believe that the CMO's report is a huge first step in regaining a balance in the area. However, the department cannot stop at this point. A huge amount remains to be done and I look forward to hearing what the Minister has to say in that respect.