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Mr. Ivan Henderson (Harwich): One of my constituents, Mrs. Baxter, who is a member of the Tendring ME support group, has written to me about a young man in Clacton who has to travel some 80 miles to London for treatment from a specialist consultant. Does my hon. Friend agree that that is an unreasonable distance to have to travel? The other point that has emerged from my support group in Tendring is that some of the research is into managing the illness, instead of treatment or a cure for the illness. Does my hon. Friend agree?
Mr. Wright: My hon. Friend makes a good point. Probably one of the greatest problems for ME sufferers depends on where they live. If they live in an area where doctors understand the problems of ME sufferers, they are fortunate indeed. Having to travel to London, as my hon. Friend's constituent does, adds to the stress. I also agree that insufficient funding has been made available for research into ME.
Such a study would need to address the duration of the illness, identify vulnerable age groups and examine the life styles of sufferers. It would also have to consider the variability of the disease according to gender, assess environmental factors, and gather a great deal of other invaluable data. A number of epidemiological studies and surveys have already been undertaken, but they have been on a small scale.
Perhaps the most cited study is the "Case History Research on ME", or the Chrome survey, set up in July 1995. Its purpose is to identify as many severely disabled ME sufferers as possible and to monitor and update, on an annual basis, the course of their illness over a 10-year period. That survey might provide a useful starting point for the broad-based study for which many medics, researchers and ME sufferers have called.
Secondly, great benefit could be gained from co-ordinating the data from all the information that has been gathered and creating a national database. For researchers and doctors to gain the maximum benefit from epidemiological data, a well-funded and expertly run information unit or centre would be an invaluable asset. An information centre would act not just as a data gatherer, but could also give advice on best practice.
In addition, it could support GPs in a number of different ways, such as by providing detailed information to aid accurate diagnosis. The close monitoring of treatments could also provide a useful function for the unit, as at present exercise regimes are often too harsh, or in some cases totally inappropriate. Using the information collated, it should be possible to produce a management manual for all those involved in the treatment of ME patients.
Perhaps such an initiative could be funded by a partnership of private and public funds. That would seem a logical step, as both the private sector and public services are victims of a disease that leads to the loss of millions of working days every year. Indeed, with so many children and young people such as Tanya growing up with the disease, and possibly never able to work, the work force of the future will be denied many talented people. That, in turn, will undoubtedly have implications for the economy.
Thirdly, I believe that there is some resonance between this debate and last year's debate on cancer, instigated by my hon. Friend the Member for Norwich, North (Dr. Gibson). That debate called for the creation of a national cancer institute to act as an umbrella organisation for clinicians, researchers, carers, voluntary organisations and other interested parties sharing the common cause of treating and curing cancer. The disease ME could lend itself to that approach equally well.
There is always room for healthy competition in any sphere of life, but it is important that we pool our knowledge for the overall good. Nowhere can that be more important than in the pursuit of cures and treatments to the major diseases that threaten the quality of our lives--and life itself.
As with AIDS and cancer, there is unlikely to be one single research project that produces a miracle cure to ME. Answers will emerge through the slow and painstaking research of many thousands of people working on the numerous different facets of the disease. There is a definite need for a fresh look at the way in which the medical profession approaches ME, and I hope that my hon. Friend the Minister will leave the debate with that point in her thoughts.
With that in mind, I very much welcome the remarks made last year by the Government's chief medical officer, Sir Kenneth Calman, when he said that the disorder
Mr. Paul Burstow (Sutton and Cheam):
I congratulate the hon. Member for Great Yarmouth (Mr. Wright) on his initiative in seeking this debate, especially as today is the ME awareness day. I am a member of the all-party group that the hon. Gentleman has done so much to bring back to life. He is to be congratulated also on his efforts to raise awareness in the House about ME, and I hope that today's debate will go some way towards raising that awareness further.
My interest in ME began not all that long ago. At the Sutton carers centre in my constituency, I was invited to meet a group of parents whose children suffer from ME. It proved a very useful lesson. I was asked a series of questions about the way in which various public services cut the parents out when it came to dealing with their children. To be honest, I had no adequate answers to the questions that were put to me. I started to make inquires about ME and about how Governments--Labour and Conservative--had dealt with it over a period of years. I tabled a series of parliamentary questions last year, culminating in the early-day motion to which the hon. Member for Great Yarmouth referred.
Moreover, as part of that awareness-raising exercise, I attended the meeting organised last year by the hon. Member for Great Yarmouth. I had the good fortune then to meet Mr. Graham Baker, the co-ordinator of the local support group in my constituency. Last Saturday, I was pleased to attend an event in my constituency that was part of the launch of the awareness week now taking place across the country. Despite the weather, that event succeeded in getting the message across to more people. There is no doubt that ME is the subject of too much misinformation, prejudice and ignorance. Anything that can be done to change that will go a long way towards helping sufferers.
The hon. Member for Great Yarmouth ended his speech with a quotation from Sir Kenneth Calman, the chief medical officer. He said:
First, there is the question of definition. The material that I read made it clear that the sensitivities involved with ME are a minefield. For example, is the disease to be called ME, or chronic fatigue syndrome? Different terms can cause great offence to sufferers. There is no doubt that the use of words can provoke strong feelings.
In 1992, the World Health Organisation listed ME as a neurological brain disorder, but many people have expressed concern--outrage, even--at the 1996 report from the Royal College of Physicians. That attempted to define ME out of existence by lumping it in with a more generic term, chronic fatigue syndrome. As the hon. Member for Great Yarmouth rightly noted, The Lancet was critical of the report, on the ground that it was too ready to dismiss viral causes of CFS in favour of structural and functional abnormalities in muscle or brain. In its editorial, The Lancet concluded that the report from the Royal College of Physicians was biased and inconclusive.
That report has fuelled the debate and, in some ways, caused further misconception. As a consequence, severe ME sufferers especially have been offered inappropriate treatments. They include cognitive behaviour therapy, which may be suitable for other categories of chronic fatigue syndrome, and graded exercise. The latter, again, may be appropriate in some cases, but, in others, can give rise to serious concern.
As I studied the question of definition, I began to realise how difficult the problem is. Even so, the national task force on CFS/ME concluded last year that, perhaps as a result of some the misconceptions and misunderstandings in the medical profession and of the pursuit of psychological rather than neurological explanations, the overall cost to the United Kingdom of the mismanagement of ME patients came to about £1 billion a year.
The same task force also identified an urgent need for training and the raising of awareness in the medical profession. It would be useful to know what role the working group is playing in that. The fact that the group was set up by the chief medical officer last year is welcome, but there is understandable cynicism among some of those who suffer ME and some carers about what the group will achieve. Can the Minister tell us something about the timetable and progress of the group, and when it might produce some tangible results for Members and for ME sufferers?
The group must lay the ground for new research into ME so that we may better understand its causes, prevalence and treatment. It is disappointing that neither the Department of Health nor the Medical Research Council has spent anything on identifying the physical or organic causes of ME. We must look to Australia or the United States of America to see any lead being given by Governments. A couple of years ago, the United States Government voted $11.8 million for ME research, and classed it as a priority one illness for research.
Several Members, including me, have tabled written questions on ME, and the Government have been reluctant to commit themselves to such research. I have some sympathy with the reason for their reluctance--the problem of definition and the lack of agreement among medical professionals. What role will the working group have in breaking that definitional logjam? In particular, what role will it play in commissioning future research? There would be some sense of purpose and direction if we could hear what progress is being made, if not on securing consensus, at least on deciding what definition will apply for an epidemiological survey.
On the matter of public services and benefits, I have received a vast number of e-mails over the past few days from people who suffer ME. They are concerned about
how the benefits system discriminates against them, and how advice to medical officers and adjudication officers is out of date, ill-informed and inadequate. All too often, poorly informed adjudication officers take appalling decisions which disadvantage many of our constituents, leading them to the trauma of the appeal process before they can receive the living allowance, incapacity benefit and other benefits to which they are entitled and which go some way towards meeting their needs. The hon. Member for Hayes and Harlington (Mr. McDonnell) spoke persuasively on the way in which the system works.
All too often, people find themselves being labelled by the benefits system as malingerers. I did not choose that word: it was used in letters to me by sufferers of ME. That attitude is hardly surprising, given the advice offered in the "Handbook for Medical Service Doctors". It states:
"is a real entity, distressing, debilitating",
and affecting many people.
"ME is a reality. It affects large numbers of people and poses a significant challenge to the medical profession."
I want to deal with three matters in this speech, which stem from my correspondence and the reading that I have done. They are the definition of ME, the overwhelming need for research, and the way in which different public services have different approaches and agendas when dealing with ME sufferers and their carers.
"There is no firm evidence to suggest that CFS is a physical disease. If you do not complete a mental health assessment, you must explain your reasons for not doing so."
The handbook continues in similar vein, giving adjudication officers almost no guidance and containing nothing that would allow them to help people suffering from impairment. As a consequence, our benefits system is disabling those people still further.
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