Professor Malcolm Hooper:
The Rt Hon Iain Duncan Smith MP
Secretary of State for Work and Pensions
The Department for Work and Pensions
18th July 2011
Dear Secretary of State
re: The major discrepancy between your Department and the Department of Health
on the same medical issue
I write to alert you to a serious error in the Statutory Payments Manual (SPM) which addresses how HM Revenue and Customs administer statutory payments including Statutory Sick Pay (http://www.hmrc.gov.uk/manuals/spmmanual/SPM50600.htm). The document (SPM50605 – Medical Referrals - Incapacity Reference Guide) which is currently used by decision makers states that matters concerning policy on these statutory payments are the responsibility of your Department.
The error concerns the description of myalgic encephalomyelitis (ME, synonymously known as ME/CFS or as CFS/ME) as a mental health disorder, despite the fact that the World Health Organisation has formally classified ME as a neurological disorder since 1969.
According to NICE, adherence to the WHO classification is mandatory in the UK (see Communications Progress Report from the Director of Communications, 18th September 2002; 18.104.22.168).
ME/CFS is not a mental disorder but a serious multi-system neuroimmune disorder affecting the central, autonomic and peripheral nervous systems as well as the immune, cardiovascular, respiratory, neuroendocrine, gastrointestinal, musculo-skeletal, visual and reproductive systems.
It is a matter of record that there are over 5,000 published papers demonstrating serious organic pathology in ME/CFS; that the Royal Society of Medicine accepted ME as a nosological organic entity in 1978; that the Department of Health accepted ME as an organic disease in 1987; that the Health Minister, the Rt Hon Stephen Dorrell MP, confirmed that “ME is established as a medical condition” in 1992; that the Chief Medical Officer, Professor Sir Liam Donaldson, publicly confirmed in 2002 that ME should be recognised alongside disorders such as multiple sclerosis and motor neurone disease; that ME has been classified as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003; that ME has been included in the UK National Service Framework for long-term neurological conditions since its inception in 2005, and that ME is accepted to be a neurological condition by the UK Government as recorded in Hansard, Lords, 2nd June 2008 (the Parliamentary Under Secretary of State for Health, Lord Darzi, was unambiguous: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition….I have acknowledged that CFS/ME is a neurological condition…the Government…have made it clear that… it is a neurological rather than a mental condition”).
There is thus a major discrepancy between two Departments of State, because your Department rejects the status quo and perversely categorises ME/CFS as a mental disorder, along with hysteria, nervous debility, neurasthenia, neurosis and personality disorder.
You may be aware that since 1987, a small but influential group of UK psychiatrists and their supporters known as the Wessely School (Hansard, Lords, 9th December 1998:1013) who are closely involved with the medical and permanent health insurance industry have consistently rejected the significant body of biomedical evidence and continue to assert that ME/CFS does not exist except as an aberrant belief held by those who claim to suffer from it and by those clinicians and medical scientists naive enough to believe and support them.
The lead advisor on ME/CFS to your Department, Professor Peter White from St Bartholomew’s Hospital, is a prominent Wessely School psychiatrist, whose vested interest in maintaining ME/CFS as a mental disorder is a serious concern to a number of senior Parliamentarians including the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology; a member of the Home Affairs Select Committee; a Minister of State for the Environment; a former President of the Royal College of Physicians; the Deputy Speaker of the House of Lords, and a former Health Minister and Honorary Fellow of the Royal College of Physicians (http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf).
An international perspective on the disorder was given in the Press Briefing held on 3rd November 2006 by the US Centres for Disease Control to announce its ME/CFS awareness campaign, referring to it as “this terrible illness”, Anthony Komaroff, Professor of Medicine, Harvard Medical School, said: “It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over. Brain imaging studies…have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain”.
However, your Department’s lead advisor on the disorder teaches UK clinicians to ignore the WHO classification of ME/CFS as a neurological disorder (http://www.meactionuk.org.uk/magical-medicine.htm pages 53-54) and in 2004 he was awarded an MBE for his work on CFS, the citation being “For services to medical education”.
This is disturbing, because since about 1987 the Wessely School have consistently denied and rejected the biomedical evidence on ME: in 1992 they directed that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms and reinforcement of disability1; in 1994 ME was described by them as merely “a belief”2; in 1996 they recommended that no investigations should be performed to confirm the diagnosis3; in 1997 they referred to ME as a “pseudo-disease diagnosis” 4, and in 1999 they said about ME patients: “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service” 5.
I should be grateful if the error in SPM50605 and any associated documents could be corrected immediately and the manuals amended accordingly.
Please also ensure that members of your Department, officials and advisors to the DWP will henceforth act in accordance with the Department of Health and with NICE about the correct categorisation of ME/CFS, the idiosyncratic stance by your Department being an illogical and insupportable position for it to adopt.
Your Department’s error is not a matter of semantics or opinion, since the DWP specifically targets those with a diagnosis of ME/CFS for removal of their Incapacity Benefit/Employment Support Allowance and other sickness/disability benefits, a matter of grave concern to informed clinicians and of immense distress to sick and vulnerable ME/CFS patients of whom, at their worst, 88% are bed/housebound, being unable to shower, bathe or wash themselves, with 15% being unable to eat unaided (http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/ME%202008%20%20What%20progress.pdf).
In the interests of transparency favoured by your Coalition government, this letter will be placed in the public domain.
I look forward to hearing from you.
Emeritus Professor of Medicinal Chemistry
University of Sunderland.
cc. The Rt Hon Andrew Lansley MP
Secretary of State for Health,
The Department of Health
Richmond House, 79 Whitehall LONDON SW1A 2NF
1 Medical Research Council Highlights of the CIBA Foundation Symposium on CFS, 12-14th May 1992, reference S 1528/1 (section entitled “The Treatment Process”), now held in the MRC secret files on ME/CFS at the National Archive, Kew, and closed not for the customary 30 years but for the unusually lengthy period of 73 years
2 “Microbes, Mental Illness, The Media and ME – The Construction of Disease”. Simon Wessely; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, 12th May 1994 (transcript and Wessely’s own working notes)
3 Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners; Royal Society of Medicine (CR54), October 1996
4 “Chronic Fatigue Syndrome and Occupational Health”; A Mountstephen & M Sharpe; Occupational Medicine 1997:47:4:217-227
5 “ME. What do we know – real physical illness or all in the mind?” Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde (transcript).
Please reply to :
Professor Malcolm Hooper
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