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Prof Hooper's complaint to DWP re classification of ME as psychiatric disease

Discussion in 'General ME/CFS News' started by Daisymay, Jul 19, 2011.

  1. Daisymay

    Daisymay Senior Member

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    This is being sent on behalf of Professor Hooper. Permission to repost.


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


    The Rt Hon Iain Duncan Smith MP
    Secretary of State for Work and Pensions
    The Department for Work and Pensions
    Level 4
    Caxton House
    Pothill Street
    LONDON
    SW1A 9NA

    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; 2.7.1.5).

    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 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).

    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 Bartholomews 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: Its not an illness that people can simply imagine that they have and its not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over. Brain imaging studieshave shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain.

    However, your Departments 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 belief2; 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 Departments 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/Resou...ments/get-informed/ME 2008 What progress.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.

    Yours sincerely


    Malcolm Hooper
    Emeritus Professor of Medicinal Chemistry
    University of Sunderland.

    Please reply to :
    Professor Malcolm Hooper
    2,Nursery Close
    Sunderland
    SR3 1PA

    Email: hoopersecundus@talktalk.net


    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 Wesselys 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).
     
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Go GO THAT MAN!!! *wild applause* :)

    Yeah Wessely *IS* a bigot and a quack, by definition and his own words damning him as the perverse monster he is.
     
  3. Enid

    Enid Senior Member

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    Thanks dasiymay - it is good to see Prof Hooper tracking these things for us.
     
  4. Jemal

    Jemal Senior Member

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    There's only quote that fits this letter:

     
  5. alex3619

    alex3619 Senior Member

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    Hi, is there an error? I think the line on 88% being housebound is either wrong or lacks clarification. For example, this might be right for the twenty five percent most affected, 88% of whom are bed or housebound. Alternatively, maybe he means 18% ?

    At this time of heightened scrutiny in the UK I am pleased to see this letter.

    Bye
    Alex
     
  6. Purple

    Purple Bundle of purpliness

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    Hello Alex,

    The 88% appears to come from the attached PDF document by AFME - on page 3, under the heading of 'Severity of illness', it states: "At their worst, 36% had been bedbound and a further 52% had been housebound."
     
  7. alex3619

    alex3619 Senior Member

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    Thanks Purple, that makes sense. What Hooper means by "at their worst" is therefore during the worst period of their illness, but not at other times. Bye, Alex
     
  8. max

    max

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    wonder if the "Quiet Man" will be decent enough to reply.
     
  9. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    Another wonderful letter by Prof. Hooper! We are so lucky to have his help. God bless him!!
     
  10. Min

    Min Guest

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    these are Prof Michael Sharpe's words, not Wessely's


    Thank goodness for Prof Hooper, there are so very few medical professionals in the UK prepared to stand up to the Wessely school of psychiatry
     
  11. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Prof Hooper's complaint

    Hoopers heart may be in the right place and in this case hes at least produced something of relative brevity (by his logorrheic standards ) but this is hardly the acme of a persuasive complaint. Effecting any change via Government is almost always best achieved with the support of an elected represntative - in this case an MP could have legitimately been recruited to make the complaint on behalf of a constituent. It is also something that would have been better co-ordinated with other UK orgs. As it happens, given the difficulties that the UK Government currently faces in other areas, this parochial issue will probably be conceeded by the DWP, nevertheless should the political masters insist that the DWP must hold the line then there are some rather obvious rebutals that would negate Hoopers complaint. If I were the bureaucrat charged with making the response Id go for:

    1. The designations used by the DWP are based on the advice of clinical experts who consider a wide range of medical opinion, the Secretary of State as a matter of course, does not override the advice that clinicians provided to the Department.

    2. Chronic Fatigue Syndrome and Myalgic Encephalitis are challenging diseases and certainly there have been many studies, producing conflicting data, the Department is confident that the advice it has been given is based on the most up to date research. You state that there have been 5,000 studies demonstrating that CFS and M.E are neurological diseases; despite extensive searches our medical advisors have been unable to verify this claim of supporting literature and have expressed the view that the preponderance of recent evidence reflects a designation appropriate to a mental health designation.

    3. You refer to the United Nations system of disease classification, while it is indeed the case that CFS and M.E are located within the Neurological section of the UN ICD, the Department is of the view that the ICD is primarily of epidemiological rather than clinical purpose and can not therefore be helpful in defining the clinically sensitive categories that best serve those whose employment is limited by ill health.

    4. The Secretary of State has every confindence in the professional competance of those advising the Department and it is neither his nor the the Departments policy to consider ad hominen attacks upon those who assist the Department in its work on the public behalf.

    5. The Secretary of State thanks you for your concern in this matter however he wishes it be made explicit that your assertion that the Department specifically targets those with a diagnosis of ME/CFS for removal of their Incapacity Benefit/Employment Support Allowance and other sickness/disability benefits has no basis in fact, rather the introduction of new assessment proceedures ensures an equality treatment irrespective of medical condition.


    Were it not for the timing of this, there would be a real danger of blow back from Hoopers letter. The 5,000 studies figure is indefensible and just makes anyone claiming it, look silly but its not a fatal problem in itself. More serious is the conflation of the simple complaint over what may be a no more than a typographical error (two asterisks wrongly located), with an attack on the credibility of a Government Department (even an aside that takes a swipe at "your Coalition Government") and Government advisors. What this type of atack encourages is defence, so rather than getting the politicians and Civil Servants on our side, the whole thing is structured to evoke a bunker response. Being right doesnt win you friends and influence and unless those who seek to advocate for the best interests of M.E/CFS affected people learn the difference between warring and diplomacy, then M.E/CFS is going to remain stuck in the Governmental and bureacratic intray marked cranks deal with firmly.

    IVI
     
  12. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
    Unfortunately correct in every respect.
     
  13. max

    max

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    Hello In Vitro

    "and unless those who seek to advocate for the best interests of M.E/CFS affected people learn the difference between warring and diplomacy, then M.E/CFS is going to remain stuck in the Governmental and bureacratic intray marked cranks deal with firmly.

    I think we have played their game for long enough, we have sought representation from 'sympathetic' representatives in Parliament and the House of Lords, we have contributed financially to support groups to voice our opinion, we have played by their rules for decades - where are we now?

    Personally I will continue annoying the hell out of our government and the MRC until they arrest me or shut me up in some other way.

    This morning, we saw yet another NHS 'specialist' (I use the term very loosely), we heard the same old garbage and rhetoric that we have heard for the last 15 years. Her abnormal bloods are unexplained, and no need to worry.

    In a nutshell, I say fight harder. They will not listen or make any changes to our benefit unless we do.


    max:headache:
     
  14. Enid

    Enid Senior Member

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    IVI - instead of criticising Prof Hooper how about getting up and fighting all the years he has done for the correct recognition of ME in the UK. Perhaps you are not aware of the whole history here of his and small groups in various capacities fighting for years. Prof Hooper has a very grateful and large (international) ME audience. I'm bed and chair bound after 11 years and much welcome his expertise and continuing fight, wish I could do more.
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Fighting them in a "gentlemanly way", will not work, for the have no honour, no scruple, no mercy, no compassion, no honesty, nor slightest shred of common decency.
    no I'm not talking violence or crap like that, merely that going around trying to act the gentlemen does BUGGER all use in a fight against gangsters, organized deceit, organized conspiracy form on high to have this "go away", and quacks and killers.

    The system's rotten top to bottom, and intent on letting us all die off out of sight and mind and their purse strings/financial ties to pharma corps etc.
    Seventy+ years ago, they had folk with this illness worked ot death in concentration camps, it's the SAME crap, now. All these kind of bastards see is: "what benefit is someone to the Mechanistic Society?"
    if you do not produce, they want you eliminated.
    Just nowadays they haven't got the guts to build slave labour camps or restart the "T-4 Program", don't damn well think they haven't thought about it though, just listen to a few of the gaffes the high-and-mighty SOBs have come out with over the years and you'll "scratch through the veneer to see what lies beneath".

    If the US and UK government will ruthlessly condemn thousands of soldiers, and their offspring, to horrible linger disease and death (Gulf War SYndrome), then anyone who thinks there is NOT an utter contempt, a lack of humanity, an arrogance so profound it would sacrifice anyone on the altar of so-called "progress", well, they are the ones out of touch with reality, not I.

    The deep contempt, the lack of Humanity, the incredible arrogance of the Medical Establishment in the UK requires it's utter destruction to the bedrock, root-and-branch criminal investigations and punishments, both professionally and criminally.
    Not gonna happen: they are part OF the "Establishment" so this will not be allowed to happen, they'd rather we died than admit they are wrong.
    If you doubt that, see the case of Dr John Bodkin Adams, as hard proof that 163 murders are NOTHING versus any hope of the Establishment changing
    http://en.wikipedia.org/wiki/John_Bodkin_Adams

    "IF YOU WANT TO MAKE ENEMIES, TRY TO CHANGE SOMETHING!"
     
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I say fight smarter.

    IVI
     
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    The problem is that the audience that gives Hooper the applause (M.E/CFS affected people), isn't the audience that can effect the changes we want. The point about my above post isn't to make a criticism of Hooper, (although I'm not a Hooper fan) but to demonstrate the failings of the position he's taken. I do find it interesting how the often the term 'fight' is used in respect of M.E/CFS activism/advocacy, yet there seems almost no conception of what successful 'fighting' entails - first rule - don't lead with your chin and give your opponent a free shot. My own view is that where one is dependent upon ones opponents to effect change, making the process into a fight is a sure way to lose.

    IVI
     
  18. max

    max

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    IVI ..... "I do find it interesting how the often the term 'fight' is used in respect of M.E/CFS activism/advocacy, yet there seems almost no conception of what successful 'fighting' entails - first rule - don't lead with your chin and give your opponent a free shot. My own view is that where one is dependent upon ones opponents to effect change, making the process into a fight is a sure way to lose." -

    Splendid if you're in a boxing ring with impartial referees - we, on the other hand are pinned on the floor getting our heads smashed in - your literary style suggests to me a high level of education - perhaps you should engage the UK authorities, get them on side, share brandy and cigars and persuade them to do a 180 in their thinking.

    Its survival of the fittest - ME peeps are not fit - we have no alternative but to fight - oh how I wish it was a level playing field, it is not, it never has been and it never will be. Those that suggest it is are either deluded, or are involved in making the rules of the game.

    IVI, I do not agree with you - you do it your way and I will continue my fight.

    regards
    max
     
  19. Enid

    Enid Senior Member

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    IVI - you say "fight" smarter - that is exactly what Prof Hooper (knowing more) has and does do. Fight in this context is not literal obviously.
     
  20. Mark

    Mark Former CEO

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    IVI, in my opinion you have made some strong points about strategy and about polarising forms of engagement, but can I ask you to concentrate some effort on framing some positive alternative suggestions please? You've hinted at the idea of approaching politicians rather than science and the BMJ, but that's the only hint I can see in your posts of a suggested alternative approach, and of course plenty of campaigning at the political level is ongoing as well so it's not an either/or. And it does seem to me that when campaigning at a political level, we hit a different brick wall where the scientists and senior politicians agree that this is a matter for scientists (read psychologists) to decide, so we seem to be in a Catch-22...

    Also, it's not clear to me yet as to what you actually see that is wrong with the current approach to ME/CFS in the UK: what you would like to see changed and why. If you don't actually object to the same things that others object to then your suggested methods may be effective in your own terms, but not in terms of achieving the kind of changes that others want to see. But, on the other hand, if you do have the same objectives for change then that could help us to start from a foundation of some agreement.

    So perhaps it might help people to better understand where you are coming from if you set out a view on what you think should change and how that change might best be achieved - it might help other members to see what objectives you have in common with them, and then other forum members can either agree with your approach, or critique it, as they see fit. But if you just post here to criticise the strategy that other advocates have adopted, then ironically your approach on this forum seems to be quite closely analogous to the very approach of patients writing letters criticising 'science'/the BMJ that you are objecting to...
     

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