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12.8 pm

Liz Blackman (Erewash): I, too, congratulate my hon. Friend the Member for Great Yarmouth (Mr. Wright) on having secured this important debate. I shall focus on the group of ME sufferers whom the hon. Member for Sutton and Cheam (Mr. Burstow) cites as the reason for his becoming interested in the subject--children, who are isolated from support systems. I should also like to amplify the remarks made by my hon. Friend the Member for Norwich, North (Dr. Gibson) about the paucity of research into young people who suffer from ME.

A study conducted in 1997 estimated that as many as 25,000 children suffer from ME. There is no identifiable cause of the condition, but, according to the 1994 national task force report on ME, one of the most common triggers appears to be viral infection. If so, it is hardly surprising that so many children suffer from ME, as I should imagine that their immune systems are less robust than those of adults. The same study described children's symptoms as severe shaking, difficulty in swallowing and mental confusion. That would be frightening to anyone, but doubly so to children.

It is obvious that the schooling of children with such symptoms will be affected. Therefore, it is not surprising that the 1997 study to which I referred identified ME as the most common cause of long-term absence from school. That is enormously worrying. The Government place great emphasis on, and have targeted significant resources at, children's learning. We recognise that the acquisition of good skills equips children for life.

The education system has always been quite good at supporting off-site learning for children with medical problems so long as those problems have a clear label and are specifically identified. Resources are triggered by medical diagnosis. If that diagnosis cannot be made, children are denied vital teaching, learning and medical support, and untold damage is done to them now and in the future. Early intervention and diagnosis triggers those resources and leads to a much speedier recovery.

12 May 1999 : Column 273

I refer the House to dyslexia and its history. At one time, dyslexia was not recognised by many sceptical professionals. Diagnosis did not occur and support was poor and haphazard--or, in many cases, non-existent. That is no longer the case: diagnosis is now speedy, resources are available and our children are far better served as a result. We can apply to ME the lessons we have learned from the dyslexia experience. I am delighted that the Department of Health chief medical officer has described ME as a "real entity". However, there is still a lack of research into ME, a lack of understanding about its causes, a lack of skill in diagnosis, a disparity of services, patient mismanagement, a lack of appropriate medical training and a degree of prejudice--although that is diminishing.

I am interested to hear how the Minister will respond to the issues that we have flagged today. How are the Government addressing them and what are their plans for the future?

12.12 pm

Mr. Alan Duncan (Rutland and Melton): I shall not detain the House for long as we want to hear the Minister's response to the debate. All hon. Members are forced to admit that this is pretty mysterious territory, and we join in condemning those who are tempted to mock ME because it cannot be readily diagnosed or explained. I infer from the excellent contributions this morning that the medical establishment is too often inclined to take the view that what it cannot explain, it will not recognise. That prejudice must be overcome.

Conservative Members fully support ME awareness day--although I must confess that it is slightly disorienting to see so many Labour Members sporting blue ribbons on their lapels. Perhaps there is a deeper message about new Labour--although it does not apply to the hon. Members for Norwich, North (Dr. Gibson) or for Clydesdale (Mr. Hood).

Several points have emerged upon which I shall dwell briefly. We clearly need uniform ME diagnosis criteria. It appears that those criteria will be difficult to establish, but we must try to achieve that goal. There is a shortage of medical expertise in diagnosing ME and a shortage of consultants who can accept referrals for the condition. In treating ME, the national health service must adapt and learn to accept that a multi-disciplinary approach is necessary. Carers can also play an important role. Perhaps the Minister can comment on that point, which is not addressed in the Government's carers strategy.

The main theme that has emerged from this morning's debate is the need for research. Everyone is struggling for information and both those who suffer from the illness and those who treat it are calling for more research. That would also appear to be Labour Members' main plea. I also sense that ME sufferers face an absolute minefield when claiming benefit. Will the Minister outline what criteria she thinks should apply to those who qualify for benefit so that there may be clear guidelines--if that is possible--and no argument about whether people are genuine sufferers?

Many hon. Members have pleaded this morning for more research into ME. Sympathy for ME sufferers binds hon. Members on both sides of the House. It is all very well our being terribly sympathetic and wearing blue ribbons, but we must ask whether the Government intend

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to do anything about it. Our concern will not add up to a row of beans if the Government do not act. As a significant number of Labour Members are calling for more research into ME, will the Minister announce today what the Government's policy in this area is and will be?

12.16 pm

The Minister for Public Health (Ms Tessa Jowell) :I begin by expressing my gratitude to my hon. Friend the Member for Great Yarmouth (Mr. Wright) for introducing this important debate. I pay tribute to him both for his contribution today and for his tireless work on behalf of ME sufferers through the all-party group. I also pay tribute to my many hon. Friends and other hon. Members who have spoken in the debate to highlight, through the painful experiences of their constituents, the need for action and the need to do much more for ME sufferers. That task will not be easy, and I shall set out where we are in relation to Government action and where we need to go.

I recognise the important work of the ME Association, made possible by grant aid and the Department of Health's section 64 programme. This is a major area of health policy which is changing and progressing--although perhaps not as quickly as we should like. We are engaged in a process of discovery and will apply our conclusions to the provision of support for ME sufferers through the national health service.

I want to pick up the point about carers and ME sufferers. Many hon. Members have paid tribute to their constituents who suffer from ME and who have taught them about the seriousness of the condition. It is essential that we convey our willingness to learn about, and to act upon, the experience of ME sufferers. We know very little about the causes of ME and we are groping to establish a proper framework for treatment. Therefore, we owe a debt of gratitude to those ME sufferers who are prepared to share their experiences with us. In the absence of a clear understanding about causes, we can make at least some progress by learning more about the condition and by applying the painful lessons of what it is like to live with ME.

Uncertainty about causation means that, certainly departmentally, the condition is referred to by two names: chronic fatigue syndrome, or CFS; and myalgic encephalomyelitis, or ME.

As we have heard this morning, CFS/ME is a distressing, debilitating and disabling condition, possibly initiated by viral infection. It is complex and difficult, and poses a challenge to medicine and the NHS. I accept that medicine is not always sufficiently humble when presented with a challenge, the origins of which it does not fully understand. Despite a great deal of commitment from professionals and voluntary organisations, enormous gaps remain in our knowledge about the cause, diagnosis and treatment for some conditions, of which CFS/ME is a prime example.

That is why the previous chief medical officer, with strong ministerial support, set up a working group to take the first steps towards improving the quality of understanding, support and care for patients with this distressing and debilitating condition. Although we do not understand its causes, we know that the condition is real for those who suffer from it and for their families. I hope that we can make a fresh start in our work on CFS/ME.

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Tanya Harrison, to whom my hon. Friend the Member for Great Yarmouth referred, is a member of the chief medical officer's working group.

I turn now to what we know about the incidence and prevalence of CFS/ME. It affects many people and their families in Britain and elsewhere. Information about actual numbers of people with the condition is hard to establish because of the problems in producing a precise definition of the illness. It is thought that as many as one or two people in every thousand may have the illness, with numbers peaking in the 20 to 40 age group.

We know that the condition is more prevalent among women and that, as my hon. Friend the Member for Erewash (Liz Blackman) made clear, it can, distressingly, affect children as young as five. More recently, we have become aware that CFS/ME is becoming increasingly common among school-age children. For that reason, we have established, as part of the CMO's working group, a sub-group that will specifically examine children's needs. Representatives of the Department for Education and Employment and social services will sit on that sub-group.

Differences in age and sex distribution, social conditions and, possibly, genetic composition probably also affect the frequency of CFS/ME. There is probably under-reporting of the illness in some social groups. Defining the condition is fraught with difficulties. A definition of CFS/ME has been the subject of much debate, inside and outside the medical profession. It is more often defined by what it is not than by what it is. Those difficulties are compounded by the way in which the condition has been given different names.

Terminology is important, but we need to move beyond the rather doctrinaire debate about names to tackle the yawning gap in our understanding about causation, provide better care and support and concentrate on treatment and rehabilitation. If the exact cause of the condition were known, as well as the method of acquiring it and its pathophysiology, I am sure that there would be less focus on what the illness is called.

There is a great deal of debate about the causes of CFS/ME. As hon. Members have said this morning, some doctors believe that the cause is primarily psychological, but others are equally vociferous in saying that there is an entirely organic basis to the illness. No one has yet been able to provide conclusive evidence to support either view, although research is now increasingly concentrated on the organic aspects of the illness. As one of my hon. Friends said, there is a great deal of research in the United States on the organic origins of CFS/ME and the physiological changes that it creates. We hope to learn from research in this country, but fortunately such learning knows no international boundaries.

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