Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Prof Hooper's response to the Department of Health regarding the classification of ME

Discussion in 'General ME/CFS News' started by Daisymay, Aug 30, 2011.

  1. Daisymay

    Daisymay Senior Member

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    Permission to repost.

    On the 18th of July, Professor Hooper sent a letter to the Secretary of State for Work and Pensions and to the Secretary of State for Health on the discrepancy between the departments' classifications of ME. This letter is already in the public domain:

    http://www.meactionuk.org.uk/dwp_doh_classification.htm

    and here: http://forums.phoenixrising.me/show...e-classification-of-ME-as-psychiatric-disease

    To date he has received no response from the Secretary of State for Work and Pensions but has received a reply from the Department of Health. The following letter is Professor Hooper's response to that reply:


    http://www.meactionuk.org.uk/Butler-letter-reply-28-8-11.htm



    From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
    Emeritus Professor of Medicinal Chemistry
    University of Sunderland, SUNDERLAND SR2 3SD

    Chief Scientific Adviser to the Gulf Veterans' Association
    President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

    Mr Adam Butler
    Customer Service Centre
    Department of Health
    Richmond House
    79 Whitehall
    London
    SW1A 2NS

    28th August 2011

    Your ref: TO00000632586

    Dear Mr Butler

    re: The major discrepancy between the Department of Health and the Department for Work and Pensions on the same medical issue

    Thank you for your letter of 11th August 2011 sent in response to my letter of 18th July 2011 to The Rt Hon Iain Duncan Smith MP, Secretary of State at the Department for Work and Pensions that was copied to The Rt Hon Andrew Lansley MP, Secretary of State for Health, on whose behalf you replied.

    I am grateful for the courtesy shown by Mr Lansley, a similar courtesy not having been shown by Mr Duncan Smith from whose Department I have received no acknowledgement, so this letter will be copied to him.

    In my letter I drew attention to a serious error in the Statutory Payments Manual (SPM 50605) used by decision-makers, namely the categorisation of ME as a mental health disorder.

    In your reply you confirm that this error was the responsibility of the DWP: You suggest that guidance used by decision-makers in the Department for Work and Pensions (DWP) is unsatisfactory. The DWPs Health and Benefits Division was responsible for drafting the guidance. It is, of course, the case that Professor Peter White, a psychiatrist who works for the permanent health insurance industry, was and remains lead advisor on CFS to the DWP and, despite irrefutable evidence that he is incorrect, he is firmly committed to his belief that ME is a somatoform (mental) disorder and he advises the DWP accordingly.

    Herein lies the major discrepancy between two Departments of State: whilst the DWP rejects the WHO ICD-10 classification of ME as a neurological disorder and follows Professor Whites beliefs that it is a mental disorder, the Department of Health nominally accepts the WHO ICD-10 classification of it as a neurological disorder.

    There are in fact two related issues, one being the discrepancy between two Departments of State outlined above and the other relating specifically to the DoH, this being the failure of the DoH to comply with the 1995 mandate to observe the WHO-ICD-10 classification system (see below).

    The first issue

    To summarise (and reiterate) the position of both Departments of State and their previous public statements about the nature of ME:

    1. the Department of Health accepted ME as an organic disease in 1987 (Hansard, HC 27th November 1987, column 353)

    2. in a letter dated 13th March 1992 to James Pawsey MP (ref: POH (3) 2484/200), in his capacity as Parliamentary Under Secretary of State for Health, Stephen Dorrell MP set out the official view of the Department of Health on ME: referring to the Disability Handbook produced by the Disability Living Allowance Board, the Minister stated: The Handbook recognises that in some persons with ME there is evidence of persisting viral infections in muscles, with some evidence of muscle damage. Hence, a physical cause for ME is recognised.

    3. on 16th August 1992, Stephen Dorrell MP, Minister of Health, went on public record confirming that ME is established as a medical condition when he addressed a meeting of the Leicestershire ME Group

    4. not only the DoH but also the DWP recognises that ME is a physical disorder. In the British Library Current Awareness Topics Update for March 2000 is listed (on page 6) the following: Social Security Ruling, SSR 99-2p; titles II and XVI; evaluating cases involving chronic fatigue syndrome (CFS). Fed Regist 1999 Apr 30;64(83);23380-4: In accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling explains that, when it is accompanied by appropriate medical signs or laboratory findings, CFS is a medically determinable impairment that can be the basis for a finding of disability. This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS, and provides a consolidated statement of these policies and procedures.

    5. this was reported in the Disability Rights Bulletin, Summer 2000, in the following terms: In assessing DLA higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. The Commissioner, in CDLA/2822/99, held that an award of the higher rate mobility component can be made on the basis of the physical element of the condition. Guidance (DMG Memo Vol 10-3/00) advises decision makers that, in the vast majority of claims, if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement.

    6. on 18th September 2002, the Director of Communications at NICE issued a Communications Report which stated: Following discussions with the Department of Health and other national agencies the Institute has adopted a new classification system that will be applied Institute-wide (2.7.1.1); The ICD classification has been used as a basis for the new Institute classification directed at the informed reader (2.7.1.4); ICD-10classification codes are mandatory for use across England (.2.7.1.5)

    7. ME has been included as a neurological disorder in the UK Read Codes (F286) used by all GPs since 2003

    8. by letter dated 11th February 2004 to the Countess of Mar, the Parliamentary Under Secretary of State at the Department of Health, Lord Warner, confirmed that the DoH accepts the WHO classification of ME as a neurological disorder. That letter was placed by Lord Warner in the House library for access by all MPs.

    9. ME has been included in the National Service Framework for long-term neurological condition since its inception in 2005

    10. the DoH has confirmed on numerous occasions, many documented in Hansard, that the DoH itself and the UK Government accepts ME to be a neurological disorder, for example on 2nd June 2008 the then Parliamentary Under Secretary of State, Lord Darzi, was unequivocal: My Lords, the Government accept the World Health Organisations classification of CFS/ME as a neurological condition.I have acknowledged that CFS/ME is a neurological conditionthe Governmenthave made it clear that it is a neurological rather than a mental condition.

    11. by letter dated 3rd August 2011 (reference TO00000632783), Tim Morgan from the Department of Health Customer Services Centre confirmed the following: The ICD-10 is an NHS Information Standard.The NHS has a long history of using the ICD. There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation (emphasis added). Implementationapplies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre. (It is, of course, the case that Government officials such as yourself may use bogus names -- known as office names -- when writing to members of the public [Civil servants use bogus names to sign official letters; Roya Nikkhah; Sunday Telegraph; 20th June 2004], so the true authorship of both your own letter and that of Tim Morgan remains unconfirmed but must nonetheless be taken as authoritative documents).

    You say in your letter: As you may know, in 2007, NICE published Clinical Guideline 53 (CG53) on the diagnosis and management of CFS/ME in adults and children, to advise the NHS on the treatment of CFS/ME in England and Wales. The documentary evidence outlined above makes it all the more troubling that the NICE Guideline Development Group which produced CG53 expressly rejected the WHO classification of ME as a neurological disorder and voted to remove from its deliberations its initial acceptance of ME as an organic disorder, this being confirmed by patient representative Tanya Harrison in her letter of resignation dated 16th July 2007 from the GDG: the final straw came when the group voted to remove that ME/CFS is a physical illness, which reflects the beliefs and advice of Professor Peter White to the DWP.

    Mindful of the above evidence, it will not be sufficient for you to reply to this current letter saying that this discrepancy between two Departments of State is a medical matter for the PCTs to address.

    It is a policy issue and thus a matter for the two Secretaries of State themselves to address and resolve without further delay.

    The WHO has classified ME as a neurological disorder since 1969 and ME cannot be taxonomically considered by the DWP or any other Department to be a somatoform disorder; that the DWP persists in doing so is all the more disturbing when, in another Department of State, the entire NHS is mandated to regard ME as a neurological disorder.

    The second issue

    Given that the NHS has been mandated since 1995 to implement the ICD-10 classifications, and given that mandatory means obligatory, compulsory and that a mandate is an official or authoritative instruction or command, not only the DWP but also the NHS has patently failed to comply with the 1995 mandate to implement ICD-10 classifications.

    Influenced by the Wessely School (who act as advisors to other Government departments and to NICE as well as to the DWP), not only the Wessely School themselves but also many NHS neurologists are in breach of the 1995 mandate that pertains throughout the NHS: 84% of neurologists questioned stated that they do not believe ME exists as a neurological condition (J Psychsom Med 9th April 2010), despite the reported evidence of markers of severe ganglionitis having been found in the central nervous system in several post mortem samples.

    In one particular case, that of 32 year-old Sophia Mirza who died in November 2005 (whose death certificate recorded that she died of [ME]CFS), examination of her spinal cord showed inflammatory changes affecting the dorsal root ganglia, which are the gateways for all sensations going to the brain through the spinal cord. These inflammatory changes affected 75% of Sophias spinal cord.

    At the inquest held on 13th June 2006, one of the pathologists stated: ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory because there was inflammation in the basal root ganglia.

    Dr ODonovan (the neuropathologist who had examined the spinal cord) stated that ME lies more in the realms of neurology than psychiatry, in my opinion.

    Given that NHS staff are mandated to use ICD-10 codes, I should be grateful if you would explain why such a medically unsustainable situation has been allowed by the DoH to remain unchallenged for the last 16 years, since there is a legal obligation for the DoH to provide accurate ICD data to the WHO.

    Recently, 26 expert authors (from 13 countries) produced the International Consensus Criteria for ME (Carruthers B et al; J Int Med 20th July 2011) and they strongly advocate that ME be removed from the NICE CG53 definition of CFS/ME.

    This should become a priority since, despite the fact that in ICD-10 the WHO currently indexes CFS only to ME at G93.3, the Wessely School psychiatrists and their adherents who work for the insurance industry have hijacked the term CFS to mean a syndrome of chronic fatigue (which is classified in ICD-10 at F48.0 as a mental disorder but which the Wessely School erroneously insist is synonymous with ME).

    It is essential that in relation to internationally defined ME, UK Departments of State begin implementing evidence-based policy instead of creating expedient policy-based evidence (which the Wessely School has done successfully for almost 25 years) and separate ME from CFS/ME. This is now very important, especially as Professor Peter White confirmed in writing to the Editor-in-Chief of The Lancet (a copy of which was sent to me) that: The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME. That statement is mystifying, since the PACE Trial documentation consistently refers to CFS/ME. Professor Whites statement also raises the question as to why he received 5 million from the MRC (co-funded by the DoH, the DWP and the Scottish Chief Scientists Office) to study chronic tiredness that is prevalent in many primary psychiatric disorders, yet he asserts that the results of his PACE Trial are generalisable to those with a serious neurological disorder that he now claims he was not studying after all.

    These issues are of utmost importance not only to 250,000 people in the UK and their despairing families who are struggling to cope with a devastating neurological disorder, but also to the clinicians who see for themselves that people with classic ME are physically, not mentally, ill but who are thwarted in their attempt to investigate and support them by the overarching influence of the Wessely School.

    I therefore once again call upon both Secretaries of State to provide informed and firm leadership by re-circulating directions that the 1995 mandate to comply with the ICD-10 classifications must legally be complied with by clinical and clerical staff in both Departments of State and that any individuals who refuse to comply are held personally and publicly accountable for any failure to observe that mandate.

    It is obviously imperative that different Departments of State have a unified position regarding the nature of a serious disease such as ME and it is equally important that the legal requirements of the WHO be observed by the UK, which currently is not the case as far as ME is concerned. I should therefore be grateful if you would clarify what action is being taken by your own Department about these important issues.

    Yours sincerely,


    Malcolm Hooper


    2, Nursery Close
    SUNDERLAND
    SR3 1PA
    Phone 0191-5285536
    e-mail:
    hoopersecundus@talktalk.net



    cc. The Rt Hon Iain Duncan Smith MP, Secretary of State, Department for Work and Pensions.[/B]
     
  2. Enid

    Enid Senior Member

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    Thanks for posting daisymy - and thanks Pro Hooper for all his continuing hard work to correct things.
     
  3. Trooper

    Trooper Senior Member

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    Thanks from me too.
     

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