Last two pieces and then that's me for the day.
"The Countess of Mar rose to ask Her Majesty's Government what is their response to the report to the Chief Medical Officer of an independent working group on chronic fatigue syndrome/myalgic encephalomyelitis dated January 2002.
The noble Countess said: My Lords, in view of the publication in the British Medical Journal of 13th April 2002 of its survey of so-called "non-diseases" and the prominence given by the press to chronic fatigue syndrome/myalgic encephalomyelitis as a non-disease, this debate has come at a very appropriate moment. I declare an interest in that I am patron of several ME charities.
On 11th January 2002, the Chief Medical Officer is reported as saying that,
"CFS/ME should be classified as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease".
His choice of MS as an example is apt in view of the fact that this disease used to be known as "the idle man's disease". Like ME now, MS was dismissed as hysteria by some practitioners. The report contains the acknowledgement that,
"CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population".
I shall be characteristically blunt. Since 1969 ME has been formally classified by the World Health Organisation as a neurological disorder. The WHO has confirmed that it has no plans to reclassify it as a psychiatric condition in the next international classification of diseases revision which is due in 2003. However, since 1987 Dr—now Professor— Simon Wessely has been relentless in his proposition that ME does not exist. For example, in the journal of psychological medicine in 1990 he claimed that ME exists only because well-meaning doctors have not learned to deal effectively with what he called "suggestible patients".
"
"Lord Clement-Jones: My Lords, I congratulate the noble Countess, Lady Mar, on initiating today's
16 Apr 2002 : Column 898
debate. I listened to her with considerable interest. I recognise the great strength of her feelings on the matter and her particular interest in the area. I declare an interest as a patron of the Tymes Trust, which supports children and young people with ME. It has an advice line that is manned by trained people with personal experience of the illness. Training days are run for various professionals, and the trust operates a professionals referrals service that enables doctors, teachers and others to consult ME specialists.
I became interested in ME more than 20 years ago when a close family member contracted the illness after having glandular fever. In those days, we had no idea what ME was. Over 20 years ago, there was some excuse for that, but now there is little excuse, least of all for members of the medical profession. ME is a serious illness, with no known cure. It has taken many years for that to be properly recognised. The illness has a profound effect on individuals and on entire families. In this country, it affects up to 25,000 children and, it is estimated, between 100,000 and 300,000 adults. Fifty per cent of long-term sickness absence from schools is attributable to ME. The cost of the illness is estimated at £4 billion.
I want to look forward from the chief officer's report. I will not dwell on the past in the same way as the noble Baroness did. I agree that Professor Wesley has not played a particularly glorious part in the controversy over ME, or indeed in that over Gulf War syndrome. However, I take a more positive view of the chief officer's report than the noble Baroness.
In 1998, the Chief Medical Officer set up a working party to examine the treatment and management of the illness. The document was published this year by the Department of Health. Despite the controversy—in a sense, the final outcome and the resignations may have been a good thing—and the year-long delay, the report came as a relief to sufferers. The new recommendations offer a major opportunity for change in the way that young people, in particular, are treated, supported and educated. The report acknowledges the disabling nature of the illness and the severe limitations that it can impose. It recognises the need for proper, multi-disciplinary assessment at the outset, so that a flexible treatment plan can be created.
The report was described by Val Hockey, the chief executive of the ME Association, as a wake-up call for the entire medical profession. I commend the chairman of the working group, Professor Allen Hutchinson, and the CMO on the outcome."
"Many questions arise from the work of the CMOs working group. First, there is the issue of training for doctors. Some recent articles written by doctors in the wake of the report are absolutely disgraceful and ignorant. I feel strongly about some of those reactive reports, and I shall also come later to the related issue of false allegations, which are relevant in this context. Often, such allegations arise from professional ignorance or, in some cases, sheer bloody-mindedness. We also had officials engaging in covert surveillance of people with ME. There are social workers and education officials who do not understand the condition. All those others need training. The department must say what plans it has. We need good practice guidance for social workers and other professionals, not just for doctors."
"The Countess of Mar rose to ask Her Majesty's Government whether they subscribe to the World Health Organisation international classification of diseases for myalgic encephalomyelitis (ME) under ICD 10.G93.3—neurological disorders.
The noble Countess said: My Lords, first, I must declare my interest as patron of a number of charities that represent people with myalgic encephalomyelitis. ME is not a new disorder. There are many reports in medical literature dating from at least 1934. ME has been classified by the World Health Organisation in the international classification of diseases (ICD) as a neurological disorder since 1969.
In 1978, the Royal Society of Medicine accepted ME as a distinct entity with discrete signs and symptoms. In l988, the Department of Health and Social Security and the British Medical Association accepted ME as a legitimate physical disorder. In 2002, the Chief Medical Officer stated that ME should be classed as a chronic medical condition alongside multiple sclerosis and motor neurone disease.
Conversely, the WHO Guide to Mental Health in Primary Care, produced under the auspices of the Institute of Psychiatry, classifies ME as a mental disorder. I should explain that the Institute of Psychiatry is one of the World Health Organisation collaborating centres in the UK and, as such, is legitimately entitled to use the WHO logo. To the deliberately expedient or unwary, that can result—and, in the case of the classification of ME, has resulted—in confusion with the WHO in Geneva. Despite the fact that a senior civil servant in the
22 Jan 2004 : Column 1181
Department of Health has confirmed that it works to the ICD 10.G93.3 definition of ME/chronic fatigue syndrome, Ministers are providing false information to MPs by advising that it is the WHO itself that has reclassified ME as a mental disorder.
That is untrue. The WHO has confirmed in writing that the WHO Guide to Mental Health in Primary Care does not carry WHO approval and that it is "at variance" with the WHO's position on ME/CFS. The WHO has never classified ME as a psychiatric disorder and has confirmed that it has no plans whatsoever to do so.
Since 1992, one of the terms listed in the ICD as an alternative for ME is chronic fatigue syndrome. It is that term that is now used by international researchers and which has given rise to the confusing terms of ME/CFS and CFS/ME, a confusion that has served well the aims of a group of psychiatrists who assert that, whatever term is used, ME/CFS is simply medically unexplained chronic fatigue and that it should be classified as a mental disorder over which they should exert control."
It concluded with this from Lord Addington:
"Lord Addington: My Lords, I must admit to feeling as if I have put my head in a noose. We have medical disagreement raging across the Chamber and the use of words that I will not even attempt to understand. One thing is clear: the noble Countess's historical basis for complaint is solid. There is a tremendous tradition, when we do not know the medical or physical causes of something, of bringing in the quacks, to put it bluntly. That has happened on numerous occasions.
I shall give the House an example to add to the one that the noble Countess gave. Dyslexia is the one that I know most about. I can remember being told in the mid-1970s that my inability to read and write at the same rate as others was due to the fact that I came from a single-parent family. There are others examples, so I suggest that we take a sceptical look at things. With regard to the noble Countess's speech, I suspect that there are many libel lawyers who, on hearing our
22 Jan 2004 : Column 1190
debate, will react in the same way as someone on a diet looking at a cake shop window. It is a lovely feast that they cannot get at.
We must face facts. There have undoubtedly been occasions on which mental health problems have been suggested for things that turned out to be physical conditions. That has occurred. The fact that ME has a physical component—an initial physical component, at least—has been agreed by, I think, everybody here. "
The research referred to in the debate became the PACE trial!
We await the production by the Government of the Delivery plan (also delayed). De ja vue 26 years later.
