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11.35 am
Dr. Ian Gibson (Norwich, North): I congratulate my hon. Friend the Member for Great Yarmouth (Mr. Wright). It is still my family's delight to go to Great Yarmouth to sample fish and chip suppers in the market. They are much to be preferred to Delia Smith's boiled eggs and stuffed canaries.
Myalgic encephalomyelitis first came to my attention in the 1980s, when the phrase "yuppie flu" came attached. Coming from Norfolk and Norwich, I had no idea what yuppies were, and it is only since I came to London to work that I have seen yuppies going home on the No. 11 bus from Sloane square down the Kings road, Chelsea. I do not see much flu among them, but they certainly have other habits.
There has been much scepticism about whether ME exists. It is claimed that it is non-specific in its symptoms. It has no specific physical signs, and no consistent blood, pathological or radiological abnormalities are associated with it. It seems to be confined to some populations and not others, although that point is disputed. Published
evidence from randomised trials suggests that intervention with cognitive therapy and similar psychiatric intervention significantly affect its outcome.
There has been a tendency in the medical profession, which is still persistent, to dismiss ME. With their usual delicacy, members of the profession tend to tell patients to pull themselves together. They associate ME with patients whom they often see as being not quite the ticket. Their delicacy manifests itself similarly in other aspects of medical assessment such as the all-work test for welfare benefits. Again, people are told to pull themselves together, and a job will come easily to them.
On the other hand, a large and growing lobby believes strongly in the physical existence of the disease, and that lobby is supported by research. Various treatments have been espoused by sufferers. The existence of the condition is recognised by the British Medical Journal, and the Royal College of Physicians has given the disease cautious recognition, despite dubbing it chronic fatigue syndrome and alluding to its obscure cause and nature.
Despite the often polarised arguments about the subject, I have no doubt that the many of my constituents who suffer are desperately ill and feel let down by modern medicine. The name ME has been dubbed inappropriate by some, as the disease is sometimes not myalgic and there is often little evidence of encephalitis or myelitis. Argument still rages over whether it is physiological or psychological, with a psychiatric component.
I have conducted a web search country by country on ME, and there are many more hits from the United States than from anywhere else. However, the number for the USA is only double that from the United Kingdom, and the figures need to be adjusted for web use and population. Britain has far more hits than Australia and Canada, and there is little evidence of ME in continental Europe, including France, Italy and Germany. There is nothing from Africa, Asia or south America. This provides an illustration of how seriously the problem is taken across the world.
A recent survey of senior house officers in my local hospital, the Norfolk and Norwich, asked whether they had come across ME in their experiences around the world. A Malaysian said that it did not exist as far as he knew, and a Romanian said the same. The German SHO was certain that it did not exist in Germany. We shall publish that survey soon in the British Medical Journal.
Those SHOs may be right to say that ME does not exist, but it is very real to the sufferers whom I meet in my surgeries and in clinics. ME is a prime case for the evidence-based medical approach of which we have heard so much in the House over the past couple of years. Evidence-based medicine is a conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. That approach would lead to evidence-based health care and to clinical practice based on the best available evidence, using strategies derived from clinical epidemiology and medical information. ME requires exactly such a thorough approach.
There is no diagnostic test for ME and no known cause. There may be several causes, which is not unknown in medicine. There may even be one cause that manifests itself as several symptoms. There are interesting overlapping symptoms with Gulf war syndrome and glandular fever, which makes it difficult for general
practitioners to diagnose. Much more research is needed on such stress-related illnesses. As the human genome project comes on stream in the next few years, a diagnostic procedure at DNA level may unravel some of the conflicting syndromes and stress-related illnesses. There may be a common factor through which we can categorise them together.
The patients are definitely suffering and, sadly, there is no coherent approach to understanding the causes--be they viruses, hormones, chemicals or whatever--or developing a better diagnosis. The contrast with cancer research is amazing.
Mr. Andy King (Rugby and Kenilworth):
Does my hon. Friend agree that the greatest battle for ME sufferers is getting people to believe that they truly suffer from the symptoms and the disabilities that they feel that they have? The medical profession is unsympathetic. I have come across ME since the 1980s in my work in social services and as chair of social services. The debate about psychological against physiological causes means that it is little wonder that people with ME suffer stress and depression, because they make no headway in getting recognition of their situation. Does my hon. Friend agree that more sympathy and understanding are required from the medical profession?
Dr. Gibson:
I agree, but the hardest thing for GPs or medically trained people is to admit that they do not know. It is a comedown that they cannot handle. It is a training problem, which is why the Government are right to consider training medical people in a way that is more socially active, more interactive with the patient and less dismissive. It is a major problem.
It is difficult to estimate the prevalence of ME. The best studies have been done in the United States in four large cities where it is estimated that about eight in 100,000 people aged 18 or more have ME and are under medical care. A more recent study in Seattle, where they do these things in a big way, shows a figure of 265 people per 100,000. The figures vary dramatically where the problem is taken seriously. It is estimated that 500,000 or more people in the United States suffer from the condition. It affects all racial and ethnic groups and both genders, although there is some evidence that it is more prevalent among young women.
There is a paucity of study with adolescents. All my constituents who have seen me on this are adolescents, mostly women. It is important that the unique problems of chronically ill adolescents, such as family problems, social and health interactions, education and social interaction with peers, should be considered part of their care. That is too radical for the medical fraternity to handle. The dissemination of information to parents, families and school authorities is essential. The National Institutes of Health in Washington, DC has started to consider the issue, but it is the only place that I know that takes that approach, and the problem of ME, seriously.
The question whether ME is contagious is often raised. Original studies in Nevada and Florida suggested that there were ME clusters, but subsequent results have not substantiated that. That does not mean that we can rule out the possibility of an infectious agent associated with
the condition that reflects the development of the illness. Important questions remain to be answered on the possible reactivation of latent viruses, such as herpes viruses, in people's bodies and the possible role of infectious agents in some cases. That cannot be ruled out yet.
If we are to develop political and medical approaches to ME, we need to understand its clinical course. That would help to facilitate communication between physicians, doctors and patients, to evaluate new treatments and to address insurance and disability issues. The clinical course varies between patients. Recovery rates are unknown. There can be wholesale recovery, whatever that means--for instance, does it mean going back to work? Most often, people suffer periodic lapses. The disease is usually cyclical. Some people grow worse and never completely recover. There is a spectrum of problems.
Mr. Bill O'Brien (Normanton):
I congratulate my hon. Friend the Member for Great Yarmouth (Mr. Wright) on introducing the debate. I am glad to speak because I am aware of the experience of constituents suffering from ME who have approached me. I first raised the issue in the House about eight years ago, since when more and more men and women have approached me about the serious problems that they encounter. They are such that we must bring them to the attention of the House.
People have problems in following employment. Some have left employment through sickness, but they are denied their pension rights because the illness has not been established. Superannuation funds, particularly public ones, will not accept that they had to cease work because of ill health. I have a case involving a young woman who worked for a national bank. The stress of her employment led her to develop ME, as has been certified by her medical practitioner and a specialist. She went before the all-work test panel and was successful in that it has been accepted that she suffers from ME, but the superannuation fund will not pay her the sickness pension to which she is entitled. I hope that this debate will mean that some of the people who are responsible for denying benefit to many of our constituents will realise that any benefit of the doubt should be given to ME sufferers.
The payment of social benefits is a further problem. People have explained to me that on some days they feel good, but they then go downhill. Adjudication officers and others from the Benefits Agency cannot accept that such people have days where they feel good and then days when they feel that they cannot put one foot in front of the other. The Minister must take note of our concerns.
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