Benign Myalgic EncephalomyelitisME InternationalMyalgic EncephalomyelitisME International

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Countess of Mar's address in the House of Lords,  Jan 22, 2004

Moved accordingly, and, on Question, Motion agreed to.

House resumed.

Myalgic Encephalomyelitis

1.39 p.m.

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

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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.

How has that situation arisen? A very small group of UK psychiatrists, known colloquially as the "Wessely school", led by Professor Simon Wessely of Kings College, claims to specialise in ME—a discrete term denoting a discrete disorder, but a term that it uses interchangeably with chronic fatigue or tiredness; with psychiatric states of ongoing fatigue; with its own interpretation of chronic fatigue syndrome; and even with neurasthenia—all different terms representing different conditions but which that group insists are synonymous. That is despite the fact that chronic fatigue has been shown time and again to be biologically different from ME.

The group has gained dominance in the thinking about ME/CFS. Wessely is politically astute and, in conjunction with his colleagues, has gained respectability in medical and political establishments by producing vast numbers of papers that purport to be about ME. I am glad to inform the House that the matter may soon be settled once and for all. A new paper from Jason et al from the US demonstrates that ME is clinically distinct from CFS and that the current criteria for CFS do not select those with ME.

Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder, for which he claims to have developed a more intensive form of the psychiatric intervention known as cognitive behaviour therapy (CBT). That consists of using intensive, mind-altering techniques to convince patients that they do not suffer from a physical illness. It also includes forced regimes of graded exercise to be supervised by a Wessely school-trained psychotherapist aimed at getting patients back to fitness.

Wessely school psychiatrists are about to receive £11.1 million, including £2.6 million from the Medical Research Council, in an attempt to strengthen the

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weak evidence that his regime actually works for those with ME. Among his 53, largely undeclared, interests it should be noted that he is a member of the supervisory board of a company, PRISMA, that is supplying such rehabilitation programmes as CBT to the NHS for those with ME, even though such regimes have been widely shown, at their best, to be of limited and short-lasting benefit and, more importantly, at their worst, to be actively harmful to those with the disorder. The constant theme running through the Wessely School's published papers is that ME does not exist, that CFS is a psychiatric disorder and that the factors that play an important role in the perpetuation of the disorder include female gender, too much focus on normal bodily sensations, discrete personality traits, avoidance behaviour, learned helplessness, faulty thought processes, lack of motivation, secondary gain, inadequate coping strategies, interpersonal conditioning and contagious sociological hysteria.

Wessely states that patients belong to,

"a cult recruited from the environmental subculture",

and that those with ME,

"feel no guilt about their condition: sufferers from mysterious illnesses that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses".

Wessely has made numerous statements about the non-existence of the disorder that can only be described as savagely cruel to the ME community. For example, he refers to ME as a "myth". He believes that it,

"should not be dignified by [its] own formal case definition and body of research".

He asserts that symptoms found in ME,

"have no anatomical or physiological basis",

and that "muscle weakness is simulated". He advises that, to the majority of professionals, ME symptoms,

"are indeed all in the mind".

I can provide corroborative evidence of all those statements.

Neither the fact that they may be wrong nor the well documented errors of psychiatrists in the past who authoritatively misdiagnosed Parkinson's disease, multiple sclerosis, epilepsy, diabetes and thyrotoxicosis as mental disorders before medical science revealed their true aetiology, seem to have occurred to the Wessely school. It is certain that it, and it alone, is right. As the world-renowned psychologist, Dr Dorothy Rowe, pointed out:

"People who know absolutely that they are right are very dangerous".

The group's activities have stifled access to research funding for any UK researchers who want to consider organic causes of the disorder. Crucially, researchers have shown that ME may be either virally or chemically induced. There is substantial and significant published evidence not only of neurological deficits, including cerebral hypo-fusion and hypo-metabolism, but also of endocrine dysfunction, immune system dysfunction, vascular disturbances and convincing laboratory evidence of serious

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abnormalities in muscle, including abnormal recovery after exercise—not the result of de-conditioning through voluntary lack of use, as Wessely claims. There is evidence of pathology of both the central nervous and the immune systems. In particular, there is new evidence of changes in about 50 genes involved with the immune system. As long ago as 1994, Professor Paul Levine from the US National Cancer Centre stated that,

"the spectrum of illnesses associated with a dysregulated immune system must now include ME/CFS".

The recently published Canadian case definition, based on a study of more than 20,000 ME/CFS patients, provides definitive evidence for clinicians to assess and diagnose patients accurately. Wessely, the self-proclaimed "world expert" in ME/CFS, does not accept that case definition. He has said that the authors, who are universally recognised world-class experts, are not "unbiased scientists" and that there is no need for any more "poor quality science".
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