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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:
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 balancedand 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:
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:
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 of treatment recommended by the royal colleges. However, that has to be set against the negative consequences that I 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 be 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:
"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:
1. 'Because a physical illness exists therefore no psychological illness exists, or vice versa.' This either/or approach is wrong. Both types of illness may co-exist within the same person.
2. 'Because there is no evidence available to confirm a physical cause for an illness therefore the illness must have a psychological cause.' It may be psychological. Alternatively, it may be physical, and the absence of evidence to confirm this may be the resultof limitations of current medical knowledge. For example, consumption was believed to be a psychological disorder before the discovery of the tubercle bacillus.
3. 'Because an illness has a psychological origin it is not disabling or not real.' This is not true."
"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 balanced, 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.
"the committee was rigged, with dissenting voices excluded".
That view was echoed by the lead author of a major physiological study, Durval Costa of University college, London, who told The Lancet:
"The committee was too quick to reject his work because members had 'technical difficulty' with understanding whole-volume, single-photon emission tomography, the technique he used in his research."
Furthermore, in its editorial appraisal, entitled "Frustrating survey of chronic fatigue", The Lancet concluded:
"We believe that the report was haphazardly set-up, biased, inconclusive, and is of little help to patients or their physicians."
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.
"Several clinicians I spoke with expressed concern about the child with CFS who unsuccessfully participates in a poorly developed program of cognitive behavioural therapy, or CBT, and/or graduated exercise and feels like a failure because he or she is not able to resume normal activities within a few weeks or months. We need to remember that unproven treatments, whether pharmacological or psychological, are capable of having negative side-effects".
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.
"That between 1996 and 1998 no resources were allocated by the Department of Health or the Medical Research Council to investigate the physical cause of ME."
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 establishment.
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