Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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simon wessely vs prof malcolm hooper

Discussion in 'Action Alerts and Advocacy' started by heapsreal, Aug 29, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I Stole this from another site but i dont think they will mind, its all for the cause.




    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:


    http://www.meactionuk.org.uk/Response-to-Observer-article.htm

    Observer article about Professor Wesselys allegations of death threats:
    Professor Hoopers 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
    years.

    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 industrys 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 Wesselys 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 Schools 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 Schools 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
    media.

    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
    fitness).


    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
    patients.

    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 doesnt mean that doctors will pay any
    attention.


    The Wessely Schools 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
    patients.

    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 todays 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
    ME.

    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 MEI will argue that this line here (pointing to a
    slide) representsthe 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
    diagnosis.

    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 GPs 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:///www.meactionuk.org.uk/magical-medicine.htm) 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
    report.

    The Wessely Schools 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:
    http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf).

    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).Implementationapplies 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.
     
  2. Mya Symons

    Mya Symons Mya Symons

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    Washington
    Thank you for posting this excellent letter, heapsreal. I wonder if it would help to send this letter to all reporters who have done stories on CFS, especially if they have portrayed ME as a psychological illness without giving the other side? Do you know who he has sent this letter to?

    I did not know Wessley had said and written all these things. I read this and started thinking about the posts here where people mentioned suing for libel and slander. If only we could come up with the money....
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    he has a conflict of interest with insurance companies and ME. Be interesting to send a copy to all the newspapers etc. I think he is just the devil in disguise.

    cheers!!!
     
  4. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    What a great letter. Thank you once again, Prof. Hooper!
     
  5. Enid

    Enid Senior Member

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    UK
    Thanks heapsreal - it's always good to see Prof Hooper's knowledgeable writings aired publicly now.Especially now in the light of a very public attempt to discredit ME sufferers in certain parts of the Press (and certain journalists). Their motives are pretty transparent.
     
  6. Francelle

    Francelle Senior Member

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    Victoria, Australia
    Prof Hooper has such a wonderful handle on the history, the politics and current state of affairs of M.E. and writes it so well. Always very long dialogues of course but to cover it all adequately I guess it needs to be long!

    Why do we 'to a man' see such relative evil and deception behind the way this whole condition has been handled over the years, yet it continues to perpetuate? May justice prevail....and very soon!
     
  7. eric_s

    eric_s Senior Member

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    Switzerland/Spain (Valencia)
    I wonder how a small group of people who are not MPs or gov't ministers/PM can have such an influence. How is it possible an MP who has had ME will collapse and die and yet this misinformation can continue? Won't other MPs then realize how serious this is and stop this bs and make sure this illness is funded and researched properly? It's hard to understand.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its all about money and or saving money in the UK by not paying disability for ME. I think other countries see the benefits of keeping it psychological as well, eg in australia if antivirals like famvir were approved for ME then it would cost $30 a month, but because its not subsidsed by the govt and classed as off label prescription this cost raises to about $200 a month and some places i have seen it sell for $400 off label, totally rediculus. If u have genital herpes u get it for $30 and i suppose many other meds would cost the health care system more. But if they spent the money on making us well then they would keep more ME patients in the work force and paying taxes, its like spending $50 to save $20 just doesnt make sense.

    I still think we should put a campane together to all go and donate blood and wessely to be given the first infusion of donated blood from ME patients, he knows he wont get sick by using GET and lots of positive thinking and exercise, yeah right!! What a dickhead, really??
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    As I keep saying and it IS relevant, what occured in Germany and Russia, and elsehwere, is much the same crap
    "Same team, different jersey" as we say here.
    Just means for an end, Wessely etc are tools, even though they are the "villains" of the piece, they, like those before, are mere tools for those who want agendas pushed.

    Look at the obscenity of the Iraq war, to see how much the media, even politicians and government itself, can be manipulated to fulfill the desires of some sick, powerful bastards.

    ME victims, like most disabled, require more care, this costs money...scum don't like this, they scream over paying taxes yet live in mansions, and would rather the "excess population died off" and will help them too if they can, merely to save a few thousand dollars/pounds.
    Which also runs into the evils of the health insurance companies, because it's in their interests to make people "untermensch"..because if you have an underclass who get no medicla help, this terrifies folk into paying obscene amounts to avoid this fate. See UNUM, they are EVIL.
    Additionally the possibility of vaccines being involved is another impetous for this abuse.

    Don't damn well kid yourselves folks, that evil didn't somehow die in Berlin, or with Stalin, it's always there.
    It's a constant fight against it, and in last 30 years, we've seen it growing, and resultant atrocious results in many areas.
     

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