Earl Howe
Earl Howe made a very good statement on 22 Jan 2004.
However I am not as impressed with his recent XMRV statement.
It is possible he could be helpful to the cause as he has been sympathetic at least in the past.
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm
Earl Howe: My Lords, this is an unusually difficult debate for non-medical parliamentarians such as myself, who come cold or nearly cold to what is, by any standards, a highly technical subject. However much background reading I may do on the clinical character of ME—I have done a good deal—I am aware that it does not qualify me in any way to pontificate on those matters and certainly not to pronounce on the essentially aetiological issues underlying the noble Countess's Question. The noble Countess, on the other hand, is in a quite different position, as she is of course steeped in the subject. She deserves to be listened to with particular care; and it is not surprising that I should find myself impressed by what she has said today.
In trying to summarise her concerns, I hope that it is not too colourful to say that we are looking at a doctors' battleground; for it is apparent that, for some years, there has been a sharp division of opinion in the world medical community about what ME actually is.
Since 1969, as the noble Countess said, ME has been formally classified by the WHO in its international classification of diseases as a neurological disorder—in other words, an organically based condition, albeit with psychiatric components. To others, it is first and foremost a psychiatric or behavioural diagnosis, albeit with a range of physical symptoms that are psychosomatic in origin. I hope that that is not too simple a way of describing the essential difference of view.
It is a difference, as we have heard, that has profound implications. For legal and medico-administrative purposes, the formal classification of a disease determines who treats the patient and how—in other words, whether one is referred to a psychiatrist or to another specialist such as a neurologist. If ME is an organic, physical illness, a psychiatrically oriented response, particularly one focusing on cognitive behavioural therapy, might not, to a layman, appear to get to the root of the difficulty, although I take note of everything that the noble Lord, Lord Turnberg, said in that context.
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The WHO guide to primary care is one of the key sources of guidance for English-speaking doctors in general practice. That is why it was with surprise that patient groups noted a couple of years ago that the guide and its associated web guide appeared to take a stance completely opposite to the official WHO line, classifying ME under the heading of "Mental and Behavioural Disorders". The diagnostic criteria for ME as listed in the guide were totally inconsistent with the internationally accepted criteria, omitting to mention numerous biological abnormalities and placing undue emphasis on lifestyle factors. How were such inconsistencies to be explained?
It turned out that that part of the WHO guide had been compiled by the Institute of Psychiatry at King's College Hospital, London, and the Department of Psychiatry at Oxford University, where a number of the proponents of the "psychiatric abnormality" school of ME are based. In September 2001, the WHO issued a statement effectively repudiating the classification of ME in the WHO guide and on the website.
When I was in the Ministry of Defence, I heard nothing but good about Professor Simon Wessely, and it is no purpose of mine to make his position difficult. I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.
The noble Lord, Lord Turnberg, was kind enough to give me some papers that defend Professor Wessely's position, the tenor of which he reflected in his speech.
I have to say that I did not find those papers as useful as I had hoped. While making clear that the professor does indeed regard ME as a real condition—I accept, of course, that he does—they not only gloss over many of his numerous published pronouncements but also skirt around the key issue of what he regards the nature of ME as being. That is important because of the very considerable influence exercised over government policymaking by those who believe that ME is an inherently mental illness.
If in the UK not enough emphasis is being placed on the WHO definition, it is likely that research on ME, which everyone agrees is vitally necessary, may be wrongly balanced. I should be interested to hear from the Minister how much research is being directed to the possible neurological and physical causes of ME as opposed to other possible causes.
There are other consequences too. If the UK, for some reason, departs from the long established WHO line, there is an obvious potential impact on disability benefits. I understand that, at present, the mobility component of DLA is not available to physically incapacitated individuals diagnosed with ME. It would be helpful to hear from the Minister why that is.
I am concerned, too, that if the definition of ME as a mental disability gains further ground, there will be profound implications in the context of the reform of the Mental Health Act. The Government's original proposals included a power to enable doctors to
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impose compulsory treatment orders on adults and children. I have considerable difficulty with the concept of compulsory treatment orders in any case, without the thought that they might capture those who should not be classified as being mentally ill in the first place.
Reputable doctors of my acquaintance will say that in treating a patient with ME, the best approach by far is a holistic one, involving mind and body, in which the patient feels that the doctor has a real empathy for him and that all his concerns are being taken seriously. But that is far from being the universal experience. There is a risk of my being too anecdotal, but I have read numerous accounts of patients who have presented to their doctor with the debilitating and distressing physical symptoms that are ascribed to ME, and who have been told, in essence, that the symptoms are psychosomatic and that they should stop making a fuss and go home.
Once we get onto that kind of territory we are on a dangerously slippery slope.
I have a particular concern for children with ME. A child presents with symptoms consistent with ME and is classified not as having an illness with an organic cause, but as being mentally disturbed. So the question is asked: what is making him mentally disturbed? All too often, the answer is that it is the parents; that is, that a parent is in some way inducing the symptoms in the child. If a parent is inducing them, the cause is clear. What is behind it is Munchausen syndrome by proxy—that ill-founded diagnosis which is so flimsy yet so powerful and which, as recent criminal cases have shown, has been instrumental in bringing about desperate travesties of justice for mothers and families. So instead of asking how the child should be treated, the question becomes: is the child safe to be left with the parent? Should care proceedings be considered? That is a train of thought that in general practice and social services is far from uncommon; and all because children who are genuinely physically ill are classified as though they are not.
Those are the issues that we have to confront.
I hope that the Minister will do so head on and that in his characteristically thorough way he will take away with him the many important questions raised in this debate and ensure that they are followed up with a proper reappraisal of this distressing and complex condition, and the guidance that is given on it. What matters is that patients with ME are treated appropriately and well. In turn, that depends on clarity from academics and evidence-based treatment guidelines. It is clear from this debate that we have some way to go before that point is reached.