May 12 1999 House of Commons................(Appeared in three parts in kickbacks 32,33 and 34)
Mr. Anthony D. Wright (Great Yarmouth): I am pleased to have secured the debate. I look forward to Members' contributions and to the Minister's response on a complex and often controversial subject.
I know from my many conversations with Members on both sides of the House that many in the Chamber today have had first hand experience of myalgic encephalomyelitis or ME as it is more commonly known either as sufferers or through the suffering of relatives or close friends I am especially pleased that the debate is taking place today as it is national ME awareness day.
Many Members will know that I have been active in reforming the all-party group on ME. I was pleased to be elected as its chair. One of the crucial tasks of those who campaign on the issue is to raise awareness of ME and its effects among the general public. One of the stated aims of all-party group is to raise awareness of the issues at Westminster- I am pleased that, to date, it has a membership of 134, as well as a number from another place
My main focus since entering the House has been on the needs of my constituents, so Members will not be surprised to hear that it was through meeting an extraordinary young woman ln Great Yarmouth that I became involved in the ME campaign. My first experience of the hardship caused by ME came some years ago, when I met Tanya Harrison, who lives in Great Yarmouth. She is 23, and has had ME for at least the past 13 years. She experienced a gradual and continual deterioration in her health until she became so severely ill that she was referred, and subsequently admitted, to Great Yarmouth's James Paget hospital.
After months of intensive treatment, varying diagnoses and consultations with specialists, Tanya was eventually diagnosed as suffering from severe and chronic ME. For the subsequent seven years, she has been bedridden for most of the time and has continued to experience additional symptoms. At the beginning of last year, at the age of 22, she developed osteoporosis of the hips and osteopaenia of the spineyet another consequence of living with severe and chronic ME.
Despite all the setbacks in her life, Tanya^s determination has shone through and she grasps with admirable zeal every opportunity to highlight the plight of fellow ME sufferers. To that end, she launched the blue ribbon for awareness of ME campaign in April 1995. Her efforts culminated in the meeting in the Grand Committee Room on 14 May 1998, at which an international line-up of experts on ME addressed an audience of sufferers, along with many Members of Parliament. I am pleased to see that some hon. Membersincluding the Ministerare wearing the blue ribbon today.
What exactly is the disease? The literal definition of myalgic encephalomyelitis is inflammation of the brain and spinal cord, but that definition does not have the universal support of the medical establishment, because it almost implies brain pathology, which has not yet been clerr1y established for the condition. Post-viral fatigue syndrome, or post-infectious fatigue syndrome are other terms used when ME-like symptoms appear after viral infection. From those terms, the hybrid definition of chronic fatigue syndrome, or CFS, has appeared- The term encompasses all the previously mentioned syndromes and has been used increasingly over recent years because of its neutrality. It does not imp1y a specific cause and accepts that there may be a variety of causes, some physiological, some psychiatric and some involving an amalgam of factors.
The difficulty that the medical profession has with a common definition is an appropriate microcosm of the whole ME debate. That is all very disconcerting for the sufferer, whose main concerns are, "What is wrong with me?" and "What can I, or my doctor, do to make me better?" The confusion and fragmentation of approach are well summed up by the title of a book written in 1991 by David Bell: "The Disease of a Thousand Names".
Perhaps more alarming still is the significant weight of evidence to suggest that inappropriate treatments have been prescribed, as exemplified in a letter that appeared in the British Medical Journal of October 1997, from Dr- Alan Franklin, medical adviser on ME. to several of the countrys leading ME organisations. The letter, which seems to sum up the feelings of many sufferers, says:
"Unfortunately, some doctors have trivialised this illness; ridiculed patients and their supporters and subjected a few of them, including children, to oppressive, perhaps even abusive forms of treatment".
Indeed, in the 1980s, ME attracted the most derogatory of labels, "yuppie flu", even though there is no evidence to suggest that it is more prevalent in one social class or grouping than another. He hope that such thinking can be consigned to history. I am optimistic that our debate today will make a contribution, however small, to a more considered approach to the disease, which is estimated -to affect between 5,000 and 10,000 sufferers per 500,000 people in the United Kingdom, according to controversial figures produced by the Roya1 coll- eges of medicine.
Unfortunately, it is difficult to escape the impression that the disease has split the medical and scientific communities into two main factions: those who believe that the root cause is psychological and those who support an organic causation. "Medicine and science do not always provide clearcut answers, and that was reflected in the observations in the report of the national task force on CFS/ME, which was produced in 1994.
On causation, the report says:"The distinction between physical illness and psychological illness is becoming progressively ore blurred. For instance, many psychiatric diseases, including depression, have been shown to have demonstrable physiological and neuro-chemical disturbances. In addition we are gaining an understanding of the influence of psychosocial factors on the development and cause of physical diseases". The report goes on: "However we live in a society which is used to thinking of illnesses as physical or psychological and which harbours differing attitudes towards these. For example, a number of patients with CFS are denied financial benefits on the grounds that these illnesses have been perceived as psychological."
Mr. Tom Clarke (Coatbridge and Chryston): I have apologised to my hon. Friend for the fact that I will be unable to attend the whole of this debate.
I was very sceptical about ME until 1992, when I suddenly discovered that I Had it, I was told by the doctor in the House and by my consultant in general medicine at Monklands hospital, Dr. Harrower, that in my case, as with about 80 or 90 per cent. of ME sufferers, the condition would probably go after about two years, and indeed it went after 20 months. I am very grateful for the remarkable sensitivity that John Smith showed at the time, when 1 was in the shadow Cabinet. I am sure that my hon. Friend will agree that not all employers are so enlightened.
My hon. Friend has done us a great service by bringing the issue to the House. It has an Impact on the Department of Health, the Department for Education and Employment and the Department of Social Security. By bringing the issue into the public domain, he has done a great service to a cause that calls for much more research, much more understanding and a more positive approach from people who, like me were once sceptical.
Mr. wright: I thank my right hon. Friend very much indeed. I am sure that he deems himself fortunate to have recovered from ME; many are not so fortunate,
The report continues: "Since our understanding and management of diseases must take place within such a society, the debate about whether CFS is physical or psychological cannot be totally ignored. This debate has been based on three erroneous premises:
The national task force report goes on to say:
"whatever the origin of the disease, or the views of their doctors, people with chronic fatigue syndromes are disabled. They need and deserve help and support"
On most aspects, the task force report is open minded, objective and ba1anced, and it appears to provide a good basis for advancing the cause in an all-embracing fashion. It certainly does not rule out an organic root to the problem of ME and it is honest in admitting the limits of current medical knowledge.
Anyone reading the document would be surprised to learn that the medical research establishment in the UK is not acting on one important element of the findings: the need for research into the organic causation of ME. The report is unambiguous about the need for a balanced and all-inclusive research programme, including both psychiatric and non-psychiatric disciplines -
Unfortunately, the report from the Royal Colleges of Physicians, Psychiatrists and General Practitioners, on which so much emphasis has been placed, does not seem to give much, if any, support to research into organic causation. It recommends research into the neurobiological aspects of CFS; randomised controlled trials of treatment, especially in primary care; and management of CFS in children.
The report, which came out in October 1996, was commissioned by the previous Government's chief medical officer and compiled by a panel of 16 experts that was top-heavy with psychiatrists or physicians believed by many to be biased towards a psychiatric diagnosis of ME.
Unsurprisingly, great emphasis is given to several studies indicating psychiatric disorder in CFS patients and the report concludes that about half
the patients fulfilled the criteria for affective disorder and a further quarter had other psychiatric illnesses, primarily anxiety and sleep disorders- How many of us in the Chamber today can say we have not suffered from anxiety and sleep disorders at some time in our lives, especially during elections? Does that mean that we are suffering from a psychiatric disorder? I shall not ask you, Mr. Deputy Speaker, to rule on that question. The expert committee rejects, for lack of evidence, any major role for a viral cause of CFS or for structural or functional abnormalities in muscle or the brain.
Many of the report's findings have been criticised by ME charities and associations, leading medical experts and medical journals. In a statement to the Lancet, Dr. Charles Shepherd, medical director of the ME Association, said:
That view was echoed by the lead author of a major physiological study, Durval Costa of University college, London, who told the Lancet:
Furthermore, in its editorial appraisal, entitled "Frustrating survey of chronic fatigue". The Lancet concluded:
There are numerous problems arising from the adoption of the findings of the royal colleges report, but for the sake of brevity I shall concentrate on a few areas of particular concern, including the consequences for research into the disorder. Since the release of the report in October 1996/ the Department of Health and the Medical Research Council have not financed any research into the physical causes of ME. That has dismayed many doctors and scientists who believe that more research is required in the areas of virology, muscle dysfunction, energy production and abnormalities in the immune system and several other neurological aspects.
Perhaps of even greater concern is the potential physical and psychological damage to patients, especially children, who are receiving the wrong treatment. In her appraisal of the royal colleges' report, Dr Terry Hedrick, who is an internationally respected expert in the evaluation of research and methodology, said:
Dr Hedrick is not alone in believing that psychiatrists are not always the best people to be treating ME patients and there is little doubt that her views have the backing of most of the support groups and many thousands of patients who believe that they are receiving inappropriate treatment. However busy GPs can hardly be blamed for recommending a particular course of treatment, if they are doing so on what they believe to be sound advice from a prestigious body of experts.
Although there are certain cardinal features for doctors to look for, diagnosis of ME can be difficult as it is what some practitioners call a hidden illness. Indeed, there are a number of cases of erroneous diagnosis, which on occasions have been quite serious. Recent examples of incorrect diagnosis, which have appeared in medical journals, show that ME has been confused with cancers in some patients. Unfortunately, a significant minority of GPs still refuse to accept that ME exists as a clinical entity, and consequently treats those patients in an unsympathetic or, in some cases, hostile manner.
Furthermore, insurance companies could use the report as evidence for placing time limits on financial support, which could lead sufferers into severe financial difficulties at a time when they are at their most vulnerable. Government policy on welfare benefits could also be influenced by such reports, what impact did the report have on the perception of the illness by people at the Benefits Agency making decisions on sufferers' welfare payments? Sadly, employers do not always look favourably on employees who are diagnosed as suffering from psychological disorders and are very often likely to view physical illness with greater sympathy.
Mr. John McDonnell (Hayes and Harlington): There are numerous cases of people being hounded out of work by unsympathetic employers. I wish to cite the example in my constituency of Andrea Morgan. She was hounded out of work, and eventually won compensation at an industrial tribunal against the London borough of Hillingdon, She also suffered two years of hounding by benefits officers and having to undergo numerous medical tests to demonstrate that she was suffering from the disease. There is not only a lack of sympathy, but an active programme of employers hounding people out of work if they have the illness.
Mr. Wright: I thank my hon. Friend, and I am sure that most hon. Members could probably tell similar stories from their constituencies. The stress that people experience when they fear that they will lose their jobs or may be forced to fight for their rights to benefit adds to the debilitating effect of ME.
There is little room for doubt that in a patient in whom the primary cause for ME. is a psychiatric condition, benefit can be derived from the various courses or treatment- recommended by the royal colleges. However, that has to be set against the negative consequences that 1 outlined earlier in my speech. If the balance is heavily tilted in favour of psychiatric causation, the objectivity of any diagnosis, and hence the exact definition of a patient's disorder, becomes more questionable. Not only does that have consequences for the patient: it makes accurate epidemiological studies much less valid, as such studies are likely to be based on bogus information.
The progress made in AIDS treatment should act as an example of what can be achieved by robust, correctly targeted and well-funded medical research. Although the miracle cure is not yet on the market, drugs have been developed that are already available and producing encouraging results. Indeed, the American Food and Drug Administration has recently approved final-phase clinical trials for the world's first AIDS vaccine. However,, Members with long memories will recall the early problems that the "medical profession had with diagnosis, and that it was only through concerted medical research that a method of detecting the HIV virus in the blood was developed. While I accept that the two diseases may he different in the way they are transmitted and in various other respects, some useful lessons could be learned in comparing the approach of the medical research establishments to the two syndromes.
The pro-psychology bias of the UK's research effort has already been brought to the attention of the House in an early-day motion, submitted during ME awareness week last year, which stated:
In an answer to a parliamentary question asked on 27 April 1998, the Department of Health's funding of four research projects was revealed: two on the management of ME, one on cognitive behavioural therapy and a fourth on the neuropsychological pathogenesis of CFS. Those projects represent a total Government spending of £285,467 but not a penny of that money was allocated to finding a physical explanation for ME. I am sure many hon. Members feel, as I do, that there is a need for the balance of our research effort to be adjusted and I hope that the Minister will respond to that imbalance. I should like to see the Government- encouraging a number of other initiatives that would take the issue forward and enhance the knowledge base of the medical establishmen.
First, there is an obvious need for an exhaustive and extensive epidemiological study of ME to discover just how widespread the disease has become and unlock more of the vital information that medics require if they are to diagnose and treat the disease successfully.
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 HM 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. ITndeed, with so many children and young people like Tanya growing up with the disease, and possibly never able to work, the work force of the future will he denied many talented people. That, in turn, will undoubtedly have implications for the economy.
Thirdly, l 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 compion 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 1 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
That statement, together with the news that the Government have set up a working group to look at the disease, represents the best news for ME sufferers in many years and has been broadly welcomed. My only concern is that the working group should contain a broad cross-section of thinking and have an open mind on all aspects of the disease. If it does, we may have reached the turning point in the ME debate that Tanya, and the thousands like her, have been seeking for so many years.
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. l 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 Caiman, the chief medical officer. He said:
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.
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 exstence 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 £l 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 or 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 reluctancethe 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:
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,
That problem goes further than the benefits system, reaching into education/. social services and other areas. We need to know the roles of the working group, the Minister and the Department of Health in co-ordinating an approach that will ensure that the Government are consistent in their attitude towards ME. Consistency is needed in advice to education authorities, social services departments and so on.
As the hon. Member for Great Yarmouth rightly said, the national task force, which reported in 1994 and 1998, provided a good basis for progress. It would be useful to hear from the Minister what will be done to deal swiftly with the recommendations of the 1998 report. Clarity is required in definitions of ME. Research is needed to determine the organic or physical causes, and we need more sympathetic and co-ordinated approaches across health, social care, education and all parts of the public service.
Dr. lan 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 causesbe they viruses, hormones, chemicals or whateveror 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. 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 meansfor 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.
We must do more to treat ME seriously, and to ensure that the medical profession does- we must eliminate the scepticism associated with the illness. There is an unmet need for ME treatment and a dearth of resources for patients and research - Suspicion of its authenticity remains. I hope that the Minister will confirm that the Government accept the validity of the disease and ensure that sufferers will not be prejudiced in welfare benefit reforms.
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.
I listened carefully to my hon. Friend the Member for Great Yarmouth because of his knowledge and technical expertise. Voluminous information has been presented today that should help to create a situation whereby people certified as suffering from ME will have no problem in having the illness identified or in getting benefits paid.
I urge my right hon. Friend the Minister to take serious note of what we are saying in the Chamber today. I ask that other Departments, such as the Department of Social Security and the Department for Education and Employment, should also take note of what we are saying on behalf of the many people whom we represent. Many forms of hardship are created for many ME sufferers: they are unable to continue their employment? they are unable to receive the appropriate benefits? and they feel that they are socially excluded from their communities, because other people do not understand that they suffer from the stress of employment.
The constituent who visited me recently made it clear that she would have preferred to continue her employment. When her ME was certified, she was advised, like my right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke), that it could clear up within two years. She hoped, therefore, that she would be able to return to work. Sadly, that did not happen. However, because she could not return to work within two years, she has been informed that the superannuation fund cannot consider her claim as she should have made it earlier. That person was doing her level best to return to work, but because her condition deteriorated she was unable to do so. Her condition is still not recognised by those people who decide whether pensions or benefits payments should be made to her.
Mr. Ivan Henderson: One of my constituents, Mrs. Baxter, who is involved with a support group, has written to me about a similar case. She was a teacher. She has not been able to teach for the past 11 years, but she really tries to work because she loves her job. Her case offers a prime example. Some weeks, she can work for one hour, or possibly two, but she then has no further energy to cope with more work. Such people want to work, but are unable to because of this disease.
Mr. OBrien: I am sure that the cases mentioned by my hon. Friend and I can be mirrored a hundred times in each of our constituencies. We all know of people who do not want to remain on benefit; they want to return to work, but find it impossible because of their physical and mental condition.
I realise that other Members want to take part in the debate. I wanted only to make those points on behalf of my constituents. We need to record such serious matters in the House and my right hon. Friend the Minister should take them seriously. I put it to her that the time has now come for us to give serious consideration to identifying and accepting ME. More research must be carried out so that we can prevent the disease, but, in the meantime, ME sufferers should not be denied recognition of their illness, or the benefits to which they are entitled. We talk about reducing social exclusion; this is one way in which we could start to do so. I appeal to my right hon. Friend the Minister to go back to her colleagues and consider the serious issues that have been presented to the House today, and to ensure that the people whom we represent receive the fairness and justice to which they are entitled.
Mr. Jimmy Hood (Clydesdale): I congratulate my hon. Friend the Member for Great Yarmouth (Mr.Wright) on initiating the debate and on affording us the opportunity to discuss this important subject. I also congratulate him and his colleagues on the all-party group on the tremendously good work that they are doing.
I have a slight feeling of deja vu, because, as my hon. Friend the Member for Great Yarmouth will be aware, I was the founder chairman of the all-party group on ME. I started it when I was a newly elected Member of Parliament in 1987. I want to share with the House the experiences that were brought to my attention. Myalgic encephalomyelitis is not an easy word to say, but at that time I had never heard of myalgic encephalomyelitis at all. I heard some insulting expressions, such as "yuppie flu", but was not too sure what that meant; it seemed to be a rude description that people used for something that they knew nothing about.
In late 1987, there was a message on the answering machine in my constituency office from a constituent who was obviously distressed. I realised that that lady was ill and needed my help, but the tape on the machine ran out during her call and she did not leave her name or her telephone number. I could only hope that she would call back. Ten days later, I received a letter from her; that was when I was introduced to myalgic encephalomyelitis. It is a horror.
I do not want to go over the ground that has been gone over so excellently this morning, but will make some points based on my experience. My constituent was involved with the charity organisation, the ME action campaignthat is how I got to know Clare Francis, who was herself a sufferer
from the disease. My hon. Friend the Member for Normanton (Mr. O'Brien) will remember that Brynmor Johnformerly the Member of Parliament for Pontypridd--suffered from ME. He helped me to prepare one of the two private Member's Bills on ME, which I presented during the early part of my parliamentary career. That is where my feeling of deja vu comes in, because that took place 11 years ago. My ten-minute Bill asked for research into diagnostic tests, because the disease could not be diagnosed and still cannot be diagnosed. It proposed that there should be an epidemiological study--epidemiological is another difficult word that I learned to pronounce.
I shall never forget that, while I was preparing some press releases before the presentation of my Billon 23 February 1988the BBC in Northern Ireland asked me to do a live telephone interview for their morning programme. I was telephoned at my flat, and I explained the purpose of my Bill. The press releases went out and I presented my Bill to the House. A few days later, I received a phone call at the House from a woman in Northern Ireland who had heard my radio interview. She had been in the process of committing suicide because although she knew that she was ill, no one would listen to her. She was trying to commit suicide when she heard an interview with a Member of Parliamentsomeone she had never heard ofwho was talking about myalgic encephalomyelitis and what we were trying to do about it. She told me that hearing that interview had given her some hope and had stopped her from committing suicide on that morning.
A tragic aspect that we have not discussed is the high incidence of suicide among ME sufferers. The woman did not leave her name or telephone number, but that experience has stayed with me because, although I was delighted that she rescued herself that time, little has been done to help ME sufferers since 1988 and I do not know what has happened to her since.
An estimated 150,000 people suffer from ME, and I suspect that the true incidence is significantly greater. My hon. Friend the Member for Norwich, North (Dr. Gibson) was right to mention stress in relation to ME, but the impact of stress more commonly arises from misdiagnosis or from people denying that someone is illsaying there is nothing wrong. Clare Francis was told, "There is something wrong with your sex lifegive yourself a shake, woman, there's nothing wrong with you." Such remarks come from snobbery or ignorance on the part of the medical profession. As has been said, doctors do not like to say that they do not know and, sooner than say that, they will say that there is nothing wrong or that something they do know about is wrong.
Most of the GPs working in the national health service are excellent providers of health care, but there are a few who, if they cannot tell a patient to stop smoking, stop drinking or go on a diet, will send that person to a psychiatrist. That is part of the problem: if doctors cannot understand the illness, they say that it is psychosomatic, with the result that 16 per cent. of the NHS budget is spent on psychosomatic illnesses. That is a fantastic sum of money, and I have to ask how much of that expenditure arises from misdiagnosis or from people being referred to psychiatrists or psychologists because doctors do not understand or do not want to understand their condition.
Having said that, I do not want to be unfair to the medical profession, for, thanks to certain doctors, an increasing number of GPs now recognise ME as an illness. There is a light at the end of the tunnel for ME sufferers, but only we in Parliament can bring that light closer. I ask the Minister to tell her advisers, some of whom will be sympathetic and others less so, to press on and to commission proper research and epidemiological studies so as to help ME sufferers. She should invite Treasury Ministers/ support by directing their attention to ME and the financial costs relating to misdiagnosis, because they might be able to save money. Let us get proper diagnostic tests and research to help the many sufferers from ME.
Because we lack hard information, there are many opinions as to what causes ME, and what its nature is. My lay experience suggests that ME is an environmental illness, and that stress is not a cause but a result of the illness. Those of us who have met people who suffer badly from ME and are disabled by it will know that they often have multiple allergies, but that aspect has not yet been properly explored. I always ask ME sufferers who write to me or come to my surgeries whether they have had any allergy tests; invariably, the answer is no. Some of the doctors who understand the illness direct patients to get allergy tests, but the link should be explored in greater depth.
Some years ago, I heard the immune system and the impact of stress on it described as the pail under the dripping tap. People who are healthy and fit can cope with a little stress in their life, but the impact of stress on someone who is ill can take that person over the edgethe pail overflows. ME sufferers' pails are brimming with their illness and related experiences, but often the thing that pushes them over the top is for them to go to a doctor and ask for help, only to be told that there is nothing wrong with them.
We show deference to our doctorswhen we send for a doctor in the middle of the night because we are ill, the first thing that we do when he arrives is apologise for being ill and for disturbing him. When a doctor says that there is nothing wrong, but the person concerned knows that there is something wrong, it can cause great problems. If the doctor tells a family that the illness suffered by their son, daughter, wife or husband is all in his or her own mind, however much the family loves that person, they will trust the doctorthe professionalin the belief that he must know what he is talking about. However, the truth is that, all too often, the doctor does not know, and such misdiagnoses cause stresses within the family that add to the burden on the patient of the stress caused by ME.
I ask the Minister to keep an open mind and to listen to what we have said today. This Government, more than any other, has to offer the helping hand to ME sufferers. Let us have proper research, let us go out and look for a proper diagnostic test, let us commission that epidemiological study, and let us give the tens of thousands of sufferers of ME the help that they need.
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 subjectchildren, 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 places 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.
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 haphazardor, 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 prejudicealthough 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?
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 dayalthough 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 establih, 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 possibleand 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 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?
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 that is changing and progressingalthough perhaps not as quickly as we would 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.
Tanya Harrison, to whom my hon. Friend the Member for Great Yarmouth referred, is a member of the chief medical officers 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 it 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.
Mr. Duncan: I apologise for intervening because I do not want to take up the Minister's time, but, in the remaining minutes of the debate, will she announce positive action that the Government will take in response to the requests of her hon. Friends?
Ms Jowell: The hon. Gentleman should contain his impatience because I shall certainly set out what action the Government will take.
The Department of Health funds research through different sources, and has recently funded research on CFS/ME at the university of Manchester on "The role of noradrenaline in the neuropsychological pathogenesis of the chronic fatigue syndrome." We look forward to the results of that research being made available.
I underline that the Medical Research Council is always willing to consider new ideas for research and will-judge applications on their scientific merits. Everything that we have heard this morning demonstrates that there is a need to prod scientists with an interest and competence in the condition to consider submitting proposals so that we can close some of the gaps in our knowledge.
Important research is being carried out in related areas, including the study of molecules and cells, and genetics and infections and immunity, which will inform our understanding of the causes of CFS/ME.
The Department of Health has been funding, through its own research and development programme, a research project called "Should GPs manage chronic fatigue syndrome? A controlled trial", which has recently reported. Unfortunately, its results were inconclusive. In addition, the NHS standing group on health technology has recently identified the latest series of priority areas for which it anticipates commissioning primary research or systematic reviews. One of the topics identified is management strategies for chronic fatigue syndrome.
In all cases, priorities for our research budgets reflect analysis of the burden of disease, potential benefits and broader Government priorities. I hope that the message will go out to those with an interest in pursuing research on CFS/ME.
The difficulties of defining a cause for CFS/ME mean that there is no single diagnostic test for the condition. Diagnosis hinges largely on the elimination of other possible conditions through a series of specific tests. Treatment to relieve the wide variety of symptoms that patients can experience is, therefore, a matter for individual doctors to decide in consultation with their patients. That causes problems of inconsistency and creates difficulties in developing the evidence-based protocol that we want increasingly to be applied in the NHS. Treatment is largely focused on the relief of symptoms rather than on curing the condition, which should clearly be the aim.
The working group is due to report in summer 2000. There is wide representation in the group so that we can look beyond the medical issues to consider management, care and support for carers. The group includes representatives of carers and voluntary groups. We shall, on the basis of the chief medical officers report, issue practical advice to the NHS to improve support and, in turn, the quality of life of people who suffer from this awful and debilitating condition.
(Note from Kickback 34)
Ed: Well that was the concluding part of this debate, and although it was a rather long article, I myself, found it very interesting. We can only wait to see if the minister addresses the issues, which were raised by the various speakers. In the meantime we should all be prompted to write to our MPs, asking them: Are they aware of the all party group? Do they support its aims? If not, why not! etc,etc. and how this might affect the way you vote in future elections.
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