simon wessely vs prof malcolm hooper

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Aug 29, 2011.

  1. simpsons

    simpsons Member

    many of you will not know about the media in the uk, however now for some weeks prof sw has been publishing articles saying we are as bad as animal rights activists and he claims to have had death threats. interesting as he also claimed this from golf war vets a few years ago too

    the wonderful malcolm hooper has replied and i thought this would be interesting for all countries to read as it covers some interesting facts regarding our illness

    the recent pace trial has caused a lot of problems with peter white now seeming to have the heat taken off of him by simon.

    also this coincides with the new international guidelines being published. which has not made the press at all.

    Professor Hooper has given permission for this longer article he
    submitted to the Observer to be made public:

    Observer article about Professor Wessely’s allegations of death threats:
    Professor Hooper’s response

    25th August 2011

    No right-minded person could condone any campaign of vilification
    against scientists (“Chronic fatigue syndrome researchers face death
    threats from militants”; The Observer, Sunday 21st August 2011);
    equally, no right-minded person could condone what psychiatrists such
    as Professor Wessely have done to the UK ME community for the last 25

    No matter what the degree of provocation, it is indefensible to liken
    people with myalgic encephalomyelitis (ME) to the Animal Liberation
    Front extremists. This will create a further tidal wave of loathing
    against them. It is an inexcusable attack on the whole ME community,
    not just on those few people who may have behaved irrationally. It
    might be thought that, of all people, psychiatrists would know how to
    recognise and deal with unbalanced behaviour instead of exploiting it.

    Wessely says he is concerned that such behaviour is putting off
    researchers but it is he who is putting them off by his endless
    purveying of so much negative publicity about people with ME. He
    perpetuates the dismissive, often contemptuous, attitude of many
    healthcare professionals toward those with the disease.

    The problem is that although these scientists claim to be studying
    patients with ME, they are studying people with chronic “fatigue” (ie.
    chronic tiredness) but then claiming that their results apply to those
    with ME; this has resulted in a lack of appropriate NHS medical
    services for those with ME and in incalculable harm and distress to
    patients and their desperate families.

    Even though the World Health Organisation has classified ME as a
    neurological disorder since 1969, the Wessely School teaches that it
    is not a neurological but a psychosocial (behavioural) disorder.

    There are about 250,000 ME patients in the UK. By comparison, there
    are about 83,000 people in the UK suffering from multiple sclerosis,
    yet the far larger numbers of ME patients coping with an equally
    serious neurological disorder are not only denied both medical and
    social support but are ridiculed, mocked, disbelieved, derided and
    abused by those charged with their medical and social care.

    Dr John Greensmith noted in a letter to The Scotsman (when Wessely was
    making the same claims of vilification by patients seven years ago):
    “It is deplorable if he has been so treated, no matter how
    controversial his views. It is instructive, however, to examine how
    Professor Wessely has raised passions to this level of fervour by,
    perhaps, more than any other single individual, being responsible for
    making the area as controversial as it is”.

    There has been a constant drip-feed of denigration of patients with ME
    and a dismissal of ME as an organic disease over the last quarter of a
    century by Professors Simon Wessely, Michael Sharpe and Peter White;
    they all belong to a group dominated by psychiatrists (named in
    Hansard in December 1998 as the “Wessely School”).

    Most of them work for the medical and permanent health insurance
    industry. The industry is panicking because it stands to lose
    millions if it has to pay out for a severe life-long physical illness
    whose worldwide incidence appears to be escalating out of control. In
    1994, Wessely went on record about the industry’s concerns: “By 1990
    insurance and disability claims (for ME) were doubling every year”.
    There is plentiful written evidence that the Wessely School advise
    their insurance industry paymasters that ME is a “functional” (ie.
    non-organic) disorder, which is to the financial advantage of the
    industry, as functional disorders are excluded from cover.

    Wessely and his colleagues are also advisors on ME to Government
    Departments of State (and Wessely’s wife is Chair of the Royal College
    of General Practitioners); as a result, people with ME are
    specifically targeted by the Department for Work and Pensions, making
    it difficult for them to claim State benefits, with the financial
    support necessary for basic survival being ruthlessly withdrawn. Many
    very sick and destitute ME patients have had no alternative but to
    commit suicide, rates of which in ME are known to be higher than
    average (sadly, a fact does little to mitigate the charge that they
    were “mental malingerers”).

    The Wessely School’s blatant financial conflict of interest has been
    roundly condemned by a group 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.

    The Wessely School’s endless assertions that ME does not exist except
    as an aberrant illness belief by those who are seeking secondary gain
    (an assertion for which there is not a shred of evidence, as the many
    doctors, nurses, medical scientists, lawyers, teachers, and others who
    have lost their valued careers, salaries, homes, marriages and even
    families because of ME will readily confirm) has created a climate of
    disgust for patients with ME, giving rise to such banner headlines as
    “GPs despise the ME generation” published in the medical trade
    magazine “GP Medicine”. Since the 1980s, they have made a point of
    mocking and denigrating sufferers from ME in a way they would not dare
    do about patients with multiple sclerosis or other neurological
    disorders and this has been fed to and reflected in the national

    The Wessely School insist that they can cure ME by “cognitive
    restructuring” (ie. brain-washing patients into believing that they do
    not suffer from an organic illness but from wrong illness beliefs) and
    by forcing them to ignore their symptoms and engage in a programme of
    incremental exercise (one MP suffering from ME collapsed and died
    leaving the House of Commons gym, having been told to exercise back to

    What is ME?

    ME is a chronic, acquired neuroimmune disorder that affects every
    bodily system, not only the neurological and immune systems but also
    the endocrine, cardiovascular and respiratory systems as well as the
    musculoskeletal and gastrointestinal systems.

    There is evidence of widespread, chronic inflammation and of serious
    problems with the blood vessels in both adults and children.

    The muscles of people with ME have been shown to take much longer to
    recover from minimal exercise. Direct impairments in oxygen delivery
    have been clearly demonstrated. Cardiac output in ME patients has been
    shown to barely meet metabolic demand, so it is no wonder that
    patients feel – and are – extremely ill, with profound incapacity and
    nausea; many patients cannot stand unsupported and often have
    difficulty maintaining their balance.

    There are more abnormal genes in ME than in cancer: there is
    compelling evidence linking ME with exposure to environmental toxins
    and chemical warfare agents. Gene expression research has demonstrated
    16 genes as having an expression profile associated with ME. Genes
    affecting the immune system and the functioning of muscles have been
    shown to be abnormal. A neuronal component was identified that is
    associated with hypomyelination of the central nervous system. The
    researchers specifically pointed out the association of
    organophosphates (which include household pesticides) and chemical
    warfare agents with the damaged genes.

    Notably, after one of the researchers who discovered these acquired
    (not inherited) gene abnormalities in ME, Dr Jonathan Kerr, publicly
    criticised the psychiatrists who control funding for ME research at
    the Medical Research Council, he lost his tenure and his contract was
    not renewed.

    He was not hounded out of his research by patients with ME, but by
    those whose mission seemed to be to ensure that his voice was
    silenced, leaving the way open for more dismissal and disparagement of
    those battling a devastating disease.

    At a press briefing in the United States on 3rd November 2006, ME was
    described by Anthony Komaroff, Professor of Medicine at Harvard and a
    world-renowned ME expert as “this terrible illness”.

    People die from ME and UK coroners have recorded it as a cause of death.

    Evidence from autopsies of ME patients is chilling: there is evidence
    of oedema, inflammation in 75% of the spinal cord, damaged arteries,
    congestion of the liver and spleen, ischaemia of the bowel,
    rhabdomyolysis (the breakdown of muscle fibres with release of muscle
    fibre contents into the circulation, some of which are toxic to the
    kidney), and degeneration of the brain. The Medical Director of one US
    support foundation commented: “Every time you look closely at someone
    with this disease, you see immense suffering. There appears to be no
    limit as to the human toll that this disease is capable of exerting on

    However, when in 2002 the UK Chief Medical Officer publicly stated
    that ME should be recognised alongside disorders such as multiple
    sclerosis and motor neurone disease, the British Medical Journal
    quoted Professor Michael Sharpe responding by saying that just because
    the CMO says something, it doesn’t mean that doctors will pay any

    The Wessely School’s published views about people with ME

    Since about 1987 the Wessely School have consistently rejected the
    biomedical evidence of serious organic pathology in ME.

    In 1990 Wessely asserted that ME exists “only because well-meaning
    doctors have not learnt to deal effectively with suggestible

    That same year he wrote in a medical textbook: “The description given
    by a leading gastroenterologist at the Mayo Clinic remains accurate:
    ‘The average doctor will see they are neurotic and he will often be
    disgusted with them’ ”.

    In 1991, he cited medical comments made between 1880 and 1908 on
    patients with neurasthenia, with the clear implication that such
    descriptions apply equally well to today’s ME patients: “always
    ailing, seldom ill; a useless, noxious element of society; purely
    mental cases; laziness, weakness of mind and supersensitiveness
    characterises them all; the terror of the busy physician”.

    In 1992 the Wessely School directed that in patients with ME, the
    first duty of the doctor is to avoid legitimisation of symptoms; that
    same year, Wessely went on record about his intention to “eradicate”

    In 1994 ME was described by Wessely as merely “a belief” and a “myth”
    (“I will argue that ME is simply a belief, the belief that one has an
    illness called ME……I will argue that this line here (pointing to a
    slide) represents…the line between real and unreal illness”) and he
    openly named and mocked a seriously ill ME patient in a lecture; that
    person is now dead.

    In 1996, under the guise of a Report from the Joint Royal Colleges of
    Physicians, Psychiatrists and General Practitioners, the Wessely
    School recommended that no investigations should be performed to
    confirm the diagnosis. (This advice to doctors was re-stated in the
    2007 NICE Clinical Guideline on “CFS/ME” in which the Wessely School
    were instrumental. This means that investigations such as a
    comprehensive immune profile cannot be ordered in the UK -- even
    though one specific immune test always corresponds to disease severity
    in ME patients -- nor can patients be sent for fMRI scans that show
    clear evidence of hypoperfusion in the brain, nor can doctors request
    SPECT scans that show reduced blood flow through the brain stem in ME
    patients in a particular pattern that to date has not been found in
    any other disease process).

    In 1997 Professor Michael Sharpe referred to ME as a “pseudo-disease

    In 1999 Sharpe 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”.

    Between February and April 2002 Wessely was involved with a poll of
    “non-diseases” carried out amongst doctors by the British Medical
    Journal: along with big ears and freckles, the poll found ME to be a
    non-disease that is best left medically untreated. As a result,
    patients with ME were struck off their GP’s list, one extremely sick
    person being told scathingly “This practice does not treat
    non-existent diseases”.

    For those who want or need to find out about the published organic
    pathology in ME, a summary of the biomedical abnormalities can found
    in Section 2 of “Magical Medicine: How to Make a Disease Disappear”
    (http:/// and those who
    want a fully referenced account of what the Wessely School and the
    insurance industry are really up to can read the rest of the 442 page

    The Wessely School’s dismissal and rejection of the biomedical
    evidence on ME has continued unabated. It was not the fact that UK
    scientists such as Professor Myra McClure failed to find evidence of
    the retrovirus XMRV found in ME patients by US researchers that caused
    such an eruption of anger within the ME community: it was the utterly
    triumphant and contemptuous comments of certain of those scientists
    whose studies failed to replicate the original XMRV study published in
    Science (2009:326:585-589) that so incensed some people with ME and
    the medical scientists and clinicians who are striving to help them.

    Patients with ME know what Wessely really thinks about them, as his
    published views leave no room for doubt or conjecture (for
    illustrations of his descriptions of ME/CFS patients, see “Quotable
    Quotes about ME/CFS”:

    The views of the Wessely School about ME have repeatedly been shown by
    medical scientists of international repute to be completely wrong: the
    recently published International Consensus Criteria for ME produced by
    26 world experts from 13 countries points to widespread inflammation
    and multisystemic neuropathology, consistent with the WHO
    classification of ME as a neurological disorder, of which the cardinal
    symptom is post-exertional nalaise. The authors state: “Myalgic
    encephalomyelitis (ME), also referred to in the literature as chronic
    fatigue syndrome, is a complex disease involving profound
    dysregulation of the central nervous system and immune system,
    dysfunction of cellular energy metabolism and ion transport and
    cardiovascular abnormalities. The underlying pathophysiology
    produces measureable abnormalities in physical and cognitive function
    and provides a basis for understanding the symptomatology.”

    What is astonishing is that no NHS clinician has the autonomy to
    regard ME as a somatoform disorder because the WHO classifies it as a
    neurological disorder; the Department of Health has confirmed in
    writing that: “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)….Implementation…applies to NHS organisations and their system
    suppliers, such as acute and foundation trusts, primary care trusts,
    and the NHS Information Centre”.

    Not only the Wessely School themselves but also many GPs and NHS
    neurologists are in breach of that mandate: in 2010, 84% of
    neurologists questioned stated that they do not believe that ME exists
    as a neurological condition.

    Who is abusing whom?

    For the Wessely School to ignore the scientific evidence that ME is a
    biomedical disorder is abusive of patients with the disorder; for them
    to advise the DWP decision-makers and to train ATOS examiners that ME
    is a mental disorder is abusive; to section patients with ME and
    remove them from their distraught families is abusive; to make sick
    people worse by inappropriate interventions is abusive; to deny them
    financial support necessary to survive is abusive; to mock them and to
    misinform others about their serious disorder is abusive; to insist
    that they suffer from wrong thinking and a fear of activity when they
    suffer from a very serious and significant medical disorder with
    reproducible multiple systemic abnormalities is abusive.

    This widespread abuse of ME patients continues unabated in the UK.

    Robin McKie implies that it is these scientists themselves who are
    being abused by the very patients they are trying to help. If this is
    true – and if it is corroborated by the police and is not another
    public attack on people with ME so often used by the Wessely School in
    the past when yet more research appears that vitiates their own
    beliefs -- it is an entirely unacceptable state of affairs and must be
    condemned without reservation.

    However, responsible journalists should exercise the requisite
    journalistic neutrality when reporting a “story” and report the whole
    issue, not just regurgitate uncritically what they are fed by those
    with well-established vested interests. McKie would do well to redress
    the balance by reporting the presentation by Catriona Courtier at the
    Royal Society of Medicine meeting in the “Medicine and me” series on
    11th July 2009 in which she emphasised the scandalous situation faced
    by ME patients in the UK:

    “Over the twenty years I have had this illness, what has really
    bedevilled the situation of patients with ME has been the belief,
    which has been persistently promulgated, that we are suffering, not
    from a physical illness but from an illness belief. This is at the
    root of all the problems we experience: the lack of resources, the
    hostility and disbelief from some doctors, the ignorance and
    disinterest in our symptoms, the ineffective treatments, the harmful
    treatments and in the very worst cases, the imposition of psychiatric
    treatment against the patient's wishes.

    “Those who promulgate the view that ME is an illness belief have
    undermined the mutual trust and respect that should exist between
    doctor and patient. They have done a great disservice to both patients
    and to the medical profession.

    “I began by describing the severely affected as the weakest among us.
    In some ways they are the strongest… to live for many years with an
    illness like ME is a huge feat of human endurance and courage but is
    seldom recognised as such. People with ME at all levels deserve to be
    respected. They deserve to be listened to”.

    That patients with ME continue to be neither listened to,
    appropriately investigated nor correctly cared for but abused and
    effectively abandoned is believed by many to be the shameful legacy of
    the Wessely School.

    Notes for Editors

    1. All the above statements can be substantiated by literature references.
    2. Much other information has been omitted purely for reasons of
    space; there are many harrowing stories, as documented by Natalie
    Boulton in her book “Lost Voices” and her DVD “Voices from the
    Shadows” that is to be shown at an international film festival in the
  2. mbofov

    mbofov Active Member

    very well done by professor Hooper. Do you know if his response was published in the Observer?

  3. simpsons

    simpsons Member

    no mary it was not published surprise surprise

    i felt sure that they would have the guts to do so however not even in a short version

    the science media council must have put their foot down, a closed shop in the uk for the press
    as you prob know

    it is the usual manipulation and media smoke and mirrors at the time the pace trial and the international guidelines are released

    malcolm hooper is really a hero lets hope that there is a reporter out there who has the guts and smells the real story here.

    the daily telegraph also publshed a negative story and needs comments asap.

    i would love to see some calm letters and comments that are not drawn into the slanging match but state the science out there. calmly and clearly stating the research we would like to be reported on

    malcolm hooper has done such us proud here, such a shame that johnathon kerr has been pushed out

  4. mbofov

    mbofov Active Member

    I've just been reading a book called The Virus and The Vaccine - all about the carcinogenic monkey virus SV-40 which contaminated millions of doses of the polio vaccine back in the late 1950's and early 1960's. It's a very good book, I'm about 3/4 of the way through and realize am getting very depressed reading it, because the medical powers that be had no interest in protecting the public from this virus for decades. I can understand taht initially they were just concerned about getting a vaccine to market ASAP because polio was such a scourge. No one intended for the contamination.

    But the researcher who discovered the contamination was punished, her career halted, and further research was discouraged or just not done. Instead of doing research, they relied on "conventional wisdom" that this extremely carinogenic virus did not cause cancer in humans (even though it readily caused cancer in laboratory animals). But no one did the human research till the mid-90's.

    Now there is lots of evidence that this monkey virus is linked to several human cancers (including mesothelioma and brain tumors). But the medical powers refused to change the growth medium for the polio virus (for the vaccine) from virus-ridden monkey kidneys for decades. Oh, Europe got a clean medium some 20 years before the U.S. did. I think it wasn't until 2000 that the U.S. finally changed. But there is evidence that some vaccines are still contaminated. The book contains a story about a 2-year-old boy who died from a brain tumor which turned out to be filled with SV-40, and he did not get it from his mother. Sorry to go on so long - it's an amazing story and extremely depressing.

    Medical research history is just extremely depressing. Politics trumps truth.

  5. simpsons

    simpsons Member

    there really needs to be more press release done by all the charities world wide regading the new international guidelines

    international press cannot be underestimated. i believe we are weak at doing press releases from our charities. this is an area we need to build on

    the second point is that the unum usa insurance firm is very much involved in this.

    unum and reinsurance firms as mr hooper states in a position whereby they stand to have to pay out a lot more money if this is counted as organic not mental health

    this is the point of the vested interests being made and the wessely school

    this is not just a uk fight but also a usa fight, together we stand divided we fall

    regarding your points mary very true
    i was reading about the polio virus that it comes back later in life

    many many years later

    i think maybe its capitalism trumps truth

    ie money talks and rules

    there shoudl be some international ruling human rights that states that there should be a time limit on payouts and that there should be an group who has powers to investigate

    prof garth nicholson is really good on vaccines his data is v v good i remember his invest in me dvd and that malcolm hooper was very impressed with the data from gw vets

    you should order it and watch if you have not done so already

    we are really under attack here by sw

    almost every newspaper has carried the story and even the spectator

    lynn gilderdale became ill after jabs at school

    sofia mirza had travel jabs too

    i also relapsed after my second lot of travel jabs

    i wish that the story of jaba would break so more do not become ill and proper testing is done

    [This Message was Edited on 08/29/2011]
  6. Mikie

    Mikie Moderator

    Thank you so very much for posting that this was reproduced with permission. It certainly makes our jobs easier as moderators when our members get permission to reproduce articles here.

    Love, Mikie
  7. simpsons

    simpsons Member

    you are welcome i never repost anything that i do not have permission to repost

    reposted with permission also these poems.

    Prayer 1: For the Politicians

    Our Politicians who art in Westminster,
    Temporary be thy fame.
    Thy election won
    They campaigning done
    In the provinces as it is in the Capital
    Give us this day our civil rights
    And forgive us our suspicions
    As we forgive those who have legislated against us
    and lead us not into litigation
    But deliver us from the world of disbelief,
    for therein lies the hypocrisy,
    behind the power and the glory
    Never and never admitted
    In your names

    Prayer 2 : For the Journalists

    Our Journalists who art in Docklands
    Hollowed be thy fame
    Thy scandals come
    Thy copy done
    Printed in The Rimes as it is in The Pun
    Forgive us this day
    Our ‘Daily’ Dread
    And forgive us this debilitation of our bodies,
    As we forgive those who have written of mental sickness against us
    And lead us not into publication
    But deliver us from the reification of a free press
    Hawking ‘Yuppie Flu’ as free speech
    Which puts the label and the -kiss and sell - story
    For ever and ever
    In our names

    Prayer 3 : For the Experts

    Our Experts who art in consultancies
    Harrowing is they fame
    Thy funding come
    Thy findings done
    In Working Groups as it is in Sounding Boards
    Forgive us this day
    Our daily dread of forced excercise
    And forgive us our debilitation’s
    As we forgive those who have disbelieved us
    And lead us into co-operation
    But deliver us from Departmental ignorance
    For therein lie the untruths
    Of malingerers and pretenders
    For ever and ever
    In our names

    and to end this one

    Reposting with permission from Emma Hughes

    Our fatigue

    Which art chronic

    M.E be thy name

    Thy illness come

    There will be pain

    In joints as it is in muscles

    Give us this day a break from bed

    And forgive us our brain fog

    As we forgive GP's that don't believe us

    Lead us not into psychiatry

    But deliver us from physio

    For theirs is the G.E.T. the C.B.T. and the pacing.

    For ever and ever

    Harming.[This Message was Edited on 08/30/2011]
  8. mbofov

    mbofov Active Member

    Actually the book I mentioned is about contamination of the polio vaccine by a carcinogenic monkey virus. The contamination occurred when researchers were cultivating the polio virus to make the vaccine, using monkey kidneys as a growth medium. The monkey kidneys were infected with various viruses, including SV-40, which is very carcinogenic. So people who got those vaccines (and there were millions) not only got a dead or weakened polio virus which is the vaccine, but also the monkey virus SV-40, which has been showing up in various cancers for many years now.

    So I wasn't talking about the recurrence of the polio virus, but a totally differnet issue, which has been buried by the press and the medical powers that be. It's a fascinating very depressing story.
  9. simpsons

    simpsons Member

    mary granted good point however this is a serious battle we have in the uk and the usa unum insurance as per magical medicine explanation me action uk is clear and has good refs regarding the involvement. for the time being we need tofocus on the amazing fight that prof malcolm hooper is putting up not just for uk patients but m.e. patients around the world who suffer at the hands of the wessely school. with respect

    reposted with permission and
    Permission to repost in public domain

    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:


    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:


    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,

    Mr Adam Butler
    Customer Service Centre
    Department of Health
    Richmond House
    79 Whitehall
    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 DWP’s 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 White’s 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” (;
    “The ICD classification has been used as a basis for the new Institute
    classification directed at the informed reader” (;
    “ICD-10…classification codes are mandatory for use across England” (

    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 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”

    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)….Implementation…applies 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
    Sophia’s 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

    Dr O’Donovan (the neuropathologist who had examined the spinal cord) stated
    that ME “lies more in the realms of neurology than psychiatry, in my

    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

    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 White’s 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 Scientist’s 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

    cc. The Rt Hon Iain Duncan Smith MP, Secretary of State, Department for Work
    and Pensions.
    [This Message was Edited on 08/30/2011]