"Zombie Science in ME/CFS?"

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 15, 2008.

  1. tansy

    tansy New Member

    by Margaret Williams
    15th August 2008

    Mental health researchers at The Institute of Psychiatry (London) are currently undertaking a study of “social cognition”. The project seeks to find out whether “the processing of social information” is affected in people with anorexia nervosa and whether or not people with anorexia can recognise complex emotions in other people.

    The anorexia group will be compared with healthy controls and also with people who have “CFS”, the latter being recruited through outpatient services of The South London and Maudsley NHS Foundation Trust.

    The project was announced in 2007 just before the publication of the NICE Guideline on “CFS/ME”.

    Recruitment for this “research” will run until the end of 2008 and the project will be completed in 2009.


    The study literature states: “The comparison with CFS will allow (researchers) to gauge whether any social cognition deficits are unique to anorexia, or reflect more global symptoms of psychiatric illness with marked physical symptoms”.

    So there we have it in black and white: according to researchers at the IoP (the home of stalwart supporters of CBT and GET for “CFS/ME” Professors Simon Wessely and Trudie Chalder), “CFS” is “a psychiatric illness with marked physical symptoms”.

    The background to the project states: “Anorexia nervosa and chronic fatigue syndrome are classical psychosomatic disorders where response to social threat is expressed somatically (e.g. Hatcher & House, 2003; Kato et al 2006; Schmidt et al 1997). Other similarities between these disorders include strong female preponderance and overlapping personality characteristics, such as being introverted and avoidant. Aberrant emotional processing is a strong candidate as a maintaining factor for these disorders (Schmidt & Treasure 2006)”.

    Is it by chance alone that this “research” coincides with the publication of the NICE Guideline and that the only “evidence” upon which the NICE Guideline Development Group relied is that of the Wessely School, whose assumption about the nature of “CFS/ME” is that it is a psychosomatic disorder and whose model and management recommendations are based on “fear avoidance” and “deconditioning”?

    It is surely remarkable that the beliefs of the Wessely School about “CFS/ME” (in which they unequivocally include “ME/CFS”) remain uninfluenced by the ever-mounting biomedical evidence which proves their beliefs to be seriously misinformed.

    A possible explanation has been put forward by Professor Bruce Charlton, Editor-in-Chief of Medical Hypotheses; Emeritus Professor of Public Policy at the University of California and Reader in Evolutionary Psychiatry at the University of Newcastle (UK).

    Charlton is well-known for his campaign to breathe new life into academic medicine in order to capture issues that matter to patients and which would make a difference to their lives.

    In a compelling Editorial (Zombie science: A sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest. Medical Hypotheses, 26th July 2008) Charlton debunks the ideal of impartial and objective science. The following quotations apply with particular resonance to the current ME/CFS situation in the UK:

    “In the real world it looks like most scientists are quite willing to pursue wrong ideas – so long as they are rewarded for doing so with a better chance of achieving more grants, publications and status”.

    “This is ‘enlightened self-interest’ a powerful factor in scientific evaluation because the primary criterion of the ‘validity’ of a theory is whether or not acting upon it will benefit the career of the scientist; ‘enlightened’ because the canny career scientist will be looking ahead a few years in order to prefer that theory which offers the best prospect of netting the next grant, tenure, promotion or prestigious job opportunity”.

    “When a new theory is launched, it is unlikely to win converts unless (they) are rewarded with a greater chance of generous research funding, the opportunity to publish in prestigious journals and the hope of increased status exemplified by admiration and respect from other scientists”.

    “Theories may become popular or even dominant purely because of their association with immediate incentives and despite their scientific weaknesses”.

    “Even the most conclusive ‘hatchet jobs’ done on phoney theories will fail to kill, or even weaken, them when the phoney theories are backed up with sufficient economic muscle in the form of funding. Scientists will gravitate to where the money is so long as the funding stream is sufficiently deep and sustained”.

    “Classical theory has it that a bogus hypothesis will be rejected when it fails to predict ‘reality’, but (this) can be deferred almost indefinitely by the elaboration of secondary hypotheses which then require further testing (and generates more work for the bogus believers)”.

    “That the first theory is phoney, and always was phoney, is regarded as simplistic, crass (and) a sign of lack of sophistication”.

    “And anyway, there are massive ‘sunk costs’ associated with the phoney theory, including the reputations of numerous scientists who are now successful and powerful on the back of the phoney theory, and who now control the peer-review process (including the allocation of grants, publications and jobs)”.

    “False theories can therefore prove very long-lived”.

    “The zombification of science (occurs) when science based on phoney theories is serving a useful but non-scientific purpose (so it is) kept going by continuous transfusions of cash from those whose interests it serves”.

    “For example, if a branch of pseudo-science based on a phoney theory is valuable for political reasons (e.g. to justify government policies) then real science expires and ‘zombie science’ evolves”.

    “(This) can be explained away by yet further phoney theoretical elaborations, especially when there is monopolistic control of information”.

    “In a nutshell, zombie science is supported because it is useful propaganda (and) is deployed in arenas such as political rhetoric, public administration, management, public relations, marketing and the mass media generally. Indeed, zombie science often comes across in the mass media as being more plausible than real science”.

    “Personal careerist benefits seem easily able to overwhelm the benefits of trying to establish the ‘real world’ of truth”.

    “In current science, there seems to be a greater possibility that large scale change may be fashion rather than progress, and such change may be serving propagandist goals rather than advancing scientific understanding”.

    “Modern science may have a lumbering pace, and its vast bulk means that once it has begun to move in a particular direction, trying to deflect its path is like stopping a charging rhinoceros”.

    “Perhaps funders co-operate, co-ordinate and collude, and therefore should be regarded as a cartel”.

    To halt this raging rhinoceros, Charlton says: “Individual ambition should ensure a sufficient supply of debunkers to keep the gardens of science weeded of bogus theories, and to banish the zombies of science to the graveyards where they belong”.

    The ME/CFS community can have no doubt that Charlton has hit the nail on the head.

    For how much longer must these desperate people be sacrificed on the defiled altar of zombie science?
  2. quilp

    quilp New Member

    why on earth did these people become 'scientists' in the first place ?
  3. tansy

    tansy New Member

    he found many of his classes boring; he became fascinated by Hysteria which he found more interesting.

    tc, Tansy
  4. tansy

    tansy New Member


    More Zombiefication of ME/CFS?

    Margaret Williams 17tb August 2008

    Not only is NICE facing a judicial review of its Guideline on "CFS/ME", it has
    also come under fire from other quarters, with calls for it to be abolished
    after "a series of 'barbaric' and 'crazy' decisions" ("Call to abolish NICE
    over 'crazy' decisions"; Daily Telegraph, 14th August 2008). The article quoted
    Jonathan Waxman, Professor of Oncology at Imperial College, London: "Professor
    Jonathan Waxman said NICE was bureaucratic, unaccountable and run by economists,
    not doctors". The article also said: "There were concerns that some of its
    processes were not transparent" and it quoted Professor Waxman verbatim: "NICE
    should be abolished. It is an unaccountable body that has made some barbaric
    decisions and is preventing patients getting the care they need".

    Four days earlier, in an article entitled "NICE distinctions may save money but
    they don't save lives" (Sunday Telegraph, 10th August 2008), Professor Karol
    Sikora said: "A conspiracy theorist would think that the conclusion was given to
    NICE by the Government and that data was found to justify the outcome. Current
    policy-making is reminiscent of the line in one of the Indiana Jones movies
    where the heroine asks Indiana at a point of crisis: 'What shall we do next?'
    He responds: 'I don't know. I'm making this up as we go' ".

    The ME/CFS community is well aware that evidence continues to mount showing that
    in the production of its Guideline on "CFS/ME", the conclusion may indeed have
    been given to NICE and that "data was found to justify the outcome".

    It cannot be denied that powerful forces are at work to deny the validity of

    It is irrefutable that certain UK psychiatrists, all deeply involved with the
    medical insurance industry, have worked unceasingly to deny the nature of
    ME/CFS. The three key players are Professor Simon Wessely, Professor Peter White
    and Professor Michael Sharpe, but there are others with undue influence such as
    Dr William Hamilton, a member of the NICE Guideline Development Group, who for
    the past 15 years has been Chief Medical Officer of a medical insurance company
    (Exeter Friendly Society) and who drew up that company's policy to exclude
    ME/CFS from benefit cover as long as it remains categorised as a "behavioural"

    Following publication of the Chief Medical Officer's Working Group Report on
    "CFS/ME" in January 2002, the medical insurance company was alarmed and set
    about tightening control of such claims with heightened self-preservation. The
    following quotations come from an article by Peter Pallot:

    "Official recognition has not brought clarity for insurers. Insurers see the
    devil in the long-term nature of CFS. Take for instance a 30-year-old City high
    flier who succumbed aged 30 when earning £75,000 a year. (He) might be in line
    to get two-thirds salary -- £50,000. Over 35 years, if the condition never
    resolved, the insurer would be paying out £1.75 million".

    "Renaming the condition CFS and discarding earlier labels, including myalgic
    encephalomyelitis (ME), was helpful".

    " 'Syndrome' implies a range of causes and symptoms, rather than a specific
    reaction to an organism".

    "Sun Life Financial of Canada managing director Paul Davies thinks the condition
    could account for as much as ten per cent of claims by value".

    "Norwich Union's Louise Zucchi says this accounts for a considerable part of the
    gamut of mental illnesses which make up a third of all claims".

    "Friends Provident technical claims manager Andy Parkinson says: 'Mental health
    and chronic fatigue claims comprise round about a quarter of all the claims we

    James Vallender, benefits operations manager of the largest company, UNUM, said:
    " 'We experienced a big rise in the 1990s but in the last 18 months or so it's
    got quieter. In 2000, cases accounted for 1.5 per cent of the caseload but
    increased last year to two per cent'. According to Vallender, some claims that
    formerly might have been classified as chronic fatigue are today examined more
    thoroughly. To this end, it is becoming standard practice for insurers to pay
    for medical interventions such as cognitive behaviour therapy in CFS cases".

    "Norwich Union uses neurologists (and) psychiatrists. Zucchi recalls: 'We had
    our first claims 12 years ago and they have continued to grow. We send trained
    people to their homes. We have put more and more emphasis on home visits and
    rehabilitation over the past five or six years' ".

    "A typical rehabilitation programme could be designed to entail exercise in a
    gym (and) this might be paid for by the insurer".

    "Sun Life Financial of Canada has co-opted the German occupational health
    company PRISMA Health to help. At the insurer's Basingstoke offices, Davies
    says insurers need just such a specialist company. The company's exposure to
    chronic fatigue claims has pushed it into a very proactive approach. Davies
    explains: 'We are probably a little more expensive but we have put a lot greater
    effort into getting people back to work. We've been looking at cases that have
    been on the books a couple of years. The crux is that if you did not apply
    rigorous medical attention and rehab programmes you really would have very long-
    term claims. We get PRISMA to talk to the family and also the partner and
    PRISMA will work out a programme to get that person's life back".

    "PRISMA's assessment costs 'a significant sum' says Davies. The group insurer
    could spend £50,000 on one rehabilitation".

    "Until recently, the role of IP (income protection) providers stopped at paying
    claims. Now they are initiating intervention in a way that seems to help all

    The article can be accessed at

    This confirms what the ME/CFS community has known for many years, namely, the
    influence of the medical insurance industry on the management of people with
    ME/CFS, which is reflected in the NICE Guideline.

    It would seem to be proof that medicine has been commandeered by industry and
    that the only outcome measure regarded as important is company profits.

    As one comment on an ME internet group so aptly noted, it is an unmitigated
    disaster "when the basic definition of the disease is wrong, when the guidelines
    for treatment are not grounded in credible evidence or in science at all, and
    the guidelines misinform health professionals so badly. We need another word
    for what we mean by 'multidisciplinary', because we mean relevant immunology,
    cardiology, neurology (and) endocrinology, and the psychosocial school don't"
    (16th August 2008; MEActionUK@yahoogroups.com ).

    Of course they don't - the paymaster of the psychosocial school is the medical
    insurance industry, which for the most part excludes "mental" disorders from
    eligibility for income protection payments.

    On the fees known to be charged by these psychiatrists for reports for the
    insurers on "CFS/ME" patients advising against the payment of insurance benefit,
    it has been calculated that each psychiatrist could easily earn an additional
    £4,000 per week on top of their NHS and academic remuneration.

    Many ME/CFS patients have to fight - in future, likely to be every three months
    -- for the right to exist on £84.50 per week.
  5. Spinetti

    Spinetti New Member

    To quote Dr. Byron Hyde in the Nightingale Definition of Myalgic Encephalomyelitis:

    Psychiatrists should not ever be
    placed in charge of diagnosis and treatment of M.E.
    patients. It is simply not their area of expertise and
    their meddling has at times caused great harm to M.E.
    patients. Also, during the 20 years that I have
    investigated M.E. patients I have yet to see a single
    case of real M.E. that has responded to psychiatric
    pharmacological treatment such that the patient has
    recovered and been able to return to work or school.

    This conclusion is based on observation and experience.

    Once reason and evidence are perverted by self interest and economic interests, science as a means to reliable knowledge cannot exist.

    Enter the Zombies.
    [This Message was Edited on 08/19/2008]
  6. tansy

    tansy New Member

    I'm putting together letters to our Department of Health and my MP to accompany the two articles above. Byron Hyde's comments will now be included in my letter.

    Byron Hyde has spoken at conferences in the UK and also contributed to the Gibson Parliamentary Enquiry; so a quote from him is especially relevant.


    tc, Tansy
    [This Message was Edited on 08/18/2008]
  7. Spinetti

    Spinetti New Member

    I thought another quote from Byron Hyde might be of interest to you, as it was to me when I read it this morning.

    In his discussion of the difference between his definition of M. E. and the CDC's definition of CFS, under the heading, "The Psychiatric Label:" Hyde says:

    If you are still not convinced, check the Internet
    for the definition of: DSMIII Somatization
    Disorder. (DSM) You will find that there is
    little substantial difference to distinguish the
    DSMIII definition from the 1988 and 1994
    CDC definitions of CFS. It is difficult to believe
    that the CDC medical bureaucracy is not aware
    of this similarity. It is thus understandable why
    the insurance industry, as well as some
    psychiatrists and physicians, have simply
    concluded that CFS, if it exists, is a
    somatization disorder.

    Tragically, the bureaucratic bungling and bad faith of our CDC, in creating the category CFS, has opened the door for UK psychiatric opportunists.

    I hope your letters have the desired effect.

    Best wishes,

    [This Message was Edited on 08/19/2008]
    [This Message was Edited on 08/19/2008]
  8. victoria

    victoria New Member

    I can't believe that all this is still going on, but wait, I can. We have our own problems here with gov't, insurance, etc., getting involved in diagnoses of what will or will not be considered 'real'.

    I sure hope that your letters and everyone else's will do some good. I am so sad to see that the CDC still uses that...

    all the best in your efforts! I sure hope some docs over here and elsewhere are writing letters too.


  9. tansy

    tansy New Member

    Hi Victoria

    It's not just that this is still going on but that the overall situation has become worse. Too many vested interests: poltical and financial.

    I have had some valuable support and more in the pipeline but little will be achieved unless everyone insists upon their illness being taken more seriously.

    tc, Tansy