Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Peter White/Barts - comments on draft NICE guidelines - insight into their views

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 15, 2009.

  1. chipmunk1

    chipmunk1 Senior Member

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    this is true because only the quality of psychiatry/psychology research is so low that they can show an effect where there is none. Biomedical research needs to produce real evidence and this can take a long time. The psychs can make up evidence anytime they need it.
     
    alkt and Min like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    It is difficult for many with ME to get together to file suit. Someone healthy needs to start the ball rolling. Somewhere out there perhaps is a close friend or relative to someone with ME who can be groomed/educated as to the facts. In the way that some ME Dr.s have stepped up.

    There are some good things happening; the documentaries, news articles, and research findings.

    When there is a biomarker that will rule out simple prolonged fatigue people. I would guess that should make any psych research finding harder to diddle with.
     
    alkt likes this.
  3. Sean

    Sean Senior Member

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    It is a sad ugly fact about humans that power tends to concentrate into the hands of workaholics and fanatics, who then use it to try to make the rest of us like them.

    Which never works out well.
     
    chipmunk1, alkt and Bob like this.
  4. Dolphin

    Dolphin Senior Member

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    He previously wrote:

     
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  5. Dolphin

    Dolphin Senior Member

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    Valentijn, Sean and Wildcat like this.
  6. Dolphin

    Dolphin Senior Member

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    From:
     
    Roseblossom, mango, Valentijn and 2 others like this.
  7. Min

    Min Guest

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    It should not be forgotten that Prof White is Chief Medical Officer for reinsurers Swiss Re.

    It is not in insurance firms' interests to acknowledge that myalgic encephalomyelitis is classified as a neurological illness, hence the huge 30 year long cover up by the psychiatrists they employ:

    http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
     
  8. user9876

    user9876 Senior Member

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    I would disagree with this. Insurance companies make money by understanding risks, associated costs and pricing policies accordingly. After Asbestosis insurance companies are very well aware of the problems with getting risks and costs wrong and also the long term consequences. So White may think he is saving Swiss Re money but as biomarkers are found they are will be in a very difficult position due to White's advice. Particularly where his advice may fit with his spin from PACE but not the actual data. It seems to me medical insurers are likely to run additional unexpected costs in believing White. What is perhaps interesting is if they QMUL liable especially for badly spun trial results.
     
    Valentijn likes this.
  9. Esther12

    Esther12 Senior Member

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    I'd be surprised if people were able to get any sort of compensation for things like that, and in the short-term White's approach has helped insurance companies pay out less money. We'll just get something like: 'the evidence submitted shows that they had the best of intentions, and should not be liable for these unfortunate problems given the limited evidence available at the time'.
     
  10. user9876

    user9876 Senior Member

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    But they will be on going policies and these won't reflect future treatment costs for people with ME or employment insurance. By pushing his theories White will have encouraged them to get their calculations wrong.

    As well as any class actions carried out by previously dismissed patients in the states. Such actions could look at the very weak basis for the medical evidence that the insurance companies relied on deny previous benefits.

    I guess I'm starting to wonder in our efforts to get PACE data is it worth trying to contact actuaries to enlist them in the attempt to get data.
     
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  11. Wildcat

    Wildcat

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    April 2009:

    http://www.meassociation.org.uk/200...rance-industry-phiincome-protection-policies/

    'ME/CFS and the insurance industry: PHI/Income Protection policies'

    The ME Association has become increasingly concerned about feedback from our members regarding the way in which some insurance companies are behaving when it comes to claims for private sickness/disability related benefits – PHI (income protection/replacement) policies in particular.


    We do not believe that the NICE guideline on ME/CFS is helping matters, especially the way in which one insurance website has interpreted the outcome of the NICE guideline judicial review to mean that ME/CFS is now classified as a psychiatric illness rather than a physical illness. As a result, it is claimed that insurance companies can opt of making payments to people with ME/CFS where there is a psychiatric illness exclusion clause in the contract. See also our report on the Countess of Mar raising this issue during a House of Lords debate by clicking here.

    We have therefore arranged a meeting with representatives from the Association of British Insurers (ABI) to discuss these and other insurance-related concerns. The meeting will take place on Wednesday 8 April.

    Whilst we cannot undertake to deal with individual insurance related problems at this meeting, we are keen to hear from anyone who has any important general points which ought to be raised at this meeting. The agenda for the meeting will be based on the concerns noted above about the NICE guideline and the various problems that are discussed in the new MEA information leaflet on PHI policies.'
     
  12. Wildcat

    Wildcat

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    October 2007:

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


    Dr Chris Bass was formerly at King’s College Hospital, London, but is now a Consultant in Liaison Psychiatry at the John Radcliffe Hospital, Oxford. Between 1993 and 1997 he was Chairman of the Liaison Psychiatry Section at the Royal College of Psychiatrists. His listed areas of research and clinical interest include patients with persistent medically unexplained physical symptoms and patients with fabricated illnesses. He has edited or co-edited five books since 1990.


    His article in the 2007 Unum Report is titled “The Interface between Psychiatric and Physical Disorders” and begins by bemoaning what Bass calls the firewall that he says continues to exist between psychological and physical disorders and services, alleging that the purchasers of healthcare operate as if the firewall was a permanent fixture. Bass then goes on to talk about the “problematic word ‘psychosomatic’”.


    “Most physicians are not trained to recognise patients with concurrent physical and psychiatric illness, nor do they realise the impact emotional problems have on the clinical, functional and economic outcomes for these patients”.


    “UK newspapers found that the word ‘psychosomatic’ had a perjorative meaning (imaginary or ‘made-up’). Clearly more needs to be done to educate the media to make it attractive to patients”.


    “In the last decade high quality research has demonstrated the key role of psychosocial factors in disorders that have previously been conceptualised as ‘medical’, such as Chronic Fatigue Syndrome (CFS)”.


    “These so-called ‘somatoform disorders’ are the third most common cause of workplace absence, which has forced the government and insurance companies to sit up and take notice”.


    “Recent figures have revealed that 70% of individuals in receipt of Incapacity Benefit have non-organic disorders, which in my opinion represents a failure of not only the medical model but also the training of doctors”.


    “Hadler, (a rheumatoligist) has pointed out that the key difficulty with fibromyalgia lies in framing the problem as biomedical. Similar processes occur in patients with CFS”.


    “These patients with nonorganic complaints are overrepresented in the clinics of alternative practitioners, where they are often provided with explanations for their symptoms that re-inforce a ‘somatic’ ailment where none exists. Patients do not need more complementary practitioners peddling non-evidence based medicine treatments – doctors need to be better trained. Regrettably, most physicians continue to be oblivious to the role of illness perception and beliefs in these disorders”.


    “Of course, patients do not like to be informed that psychosocial factors are more important than physical ones”.


    “Another gross anomaly is the provision of funding of services for patients with ‘non-organic’ disability. What is particularly galling is that the purchasers of healthcare do not appear to understand basic facts”.


    “In a recent article, a rheumatologist suggested that by 2050, ‘neurotropic blockers will put an end to the problem of fibromyalgia and myalgic encephalomyelitis’. This is the medical model run riot, and it does not bode well”.





    …… Bass continues:

    My impression (carrying out insurance medical exams for the last 10 years) is that some orthopaedic surgeons, rheumatologists and occupational physicians have become aware of the key importance of psychosocial factors in the maintenance of these disorders”.


    .……Bass finishes his article by referring to a book which he asserts “has been the cause of much cheer” but which others have referred to as “one of the worst in existence and a shameful display of ignorance on the part of its author” (see “The Mental Health Movement: Persecution of Patients?” M.Hooper et al, available at http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm ).


    The book in question is “Whiplash and Other Useful Illnesses” by Andrew Malleson, who was born and brought up in England but who is now a psychiatrist with Toronto University Health Network; he is also psychiatric consultant to the Canadian Government Occupational Health and Safety Agency and has done medico-legal work for over 15 years.


    Bass states with apparent satisfaction: “Malleson’s masterly book (2002) has raised the profile of some of the issues raised in this paper”.


    ~~~~~~~~~~



    ‘For the avoidance of doubt, what Malleson actually said in his book is this:


    “Somatizers had dropped neurasthenia like a hot brick. Fatigued somatizers needed a new diagnosis (so) they developed “chronic fatigue syndrome” (CFS) in North America and “myalgic encephalomyelitis” (ME) in the United Kingdom. Chronic fatigue syndrome has gone from strength to strength. At the end of the 1980s, conventional medicine focused on the acquired immunodeficiency syndrome of AIDS. AIDS left its victims in a chronic state of exhaustion. In the typical way that fashionable illnesses have of acquiring serious-sounding pathology, CFS quickly incorporated this concept. The chronically fatigued promptly renamed their illness “chronic fatigue and immune dysfunction syndrome (CFIDS), a condition satisfactorily endowed with all the pathological glamour of AIDS, but respectable.


    “Victims of CFS and ME, like the neurasthenics before them, are mostly young to middle-aged women from the middle and professional classes. Epidemics of ME, CFS (and) environmental hypersensitivity do not occur in the industrially underdeveloped countries. Fashions and affluence go together.


    “I have used the word ‘victim’ to designate the sufferers of fashionable illnesses. I have done so deliberately, because these sufferers are quick to adopt the victim role. They often see themselves being harmed by members of the medical profession who inflexibly refuse to recognize the validity of their suffering.


    “As well-educated members of the middle and professional classes, these victims are often vocal advocates for their own anguish. Victims aim much of their copious literature at the unbelieving doctors and their callous disregard for such illnesses (because) in order to provide compensation or support, insurance companies and government social services require medical validation of the illness.


    “Some doctors, perhaps out of a sense of scientific integrity, out of bloody-mindedness, or even, as the claimants for fashionable illnesses sometimes maintain, because of payments from insurance companies, refuse to validate these pseudo-illnesses”. '


    .
     
  13. Sidereal

    Sidereal Senior Member

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    What I really wanna know is if Peter White actually believes in his heart of hearts the stuff that he writes.
     
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    I googled Andrew Malleson.
    He is now a 'retired' psychiatrist who is 'self-employed'.
     
  15. Dolphin

    Dolphin Senior Member

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    from @maxwhd on Twitter https://twitter.com/maxwhd/status/629304320907833344:

    http://www.nihr.ac.uk/funding/RfPB_regional-advisory-committees.htm#tab10

    National Institutes for Health Research (NIHR) (UK)

     
  16. Griffin

    Griffin

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    I too have no problem with this. My issue is also with CBT based on GET. A good way of putting it Dolphin. It is clear they "invented" GET first, and then twisted and contorted CBT into something they continued to call CBT, requiring a special manual for practioners. CBT based on something else is not CBT; it is a travesty.

    The number of areas and issues affected by misrepresentation (falsification?) are too many to count.
     
    Roseblossom likes this.
  17. Kati

    Kati Patient in training

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    This is a very old thread, and what strikes me most is that people from 6 years ago are still sick, most of them still here on the forum or on other social media.

    Patients using assistive devices (wheelchairs, scooters) is a mere attempt at having a life, no more. No one would ever choose to use a wheelchair or scooter for any other reasons.

    i can't believe we are still fighting this, 6 years later. It shows the deep root that the psych lobby has, at least in the UK.
     
  18. chipmunk1

    chipmunk1 Senior Member

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    why they are doing this? because they are insane? Maybe, but they also believe wheelchairs are a secondary gain and will reinforce our "illness" behaviour and give us "patient status".

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1295910/

     
  19. Dolphin

    Dolphin Senior Member

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    Also 7:23 here:
     
  20. Dolphin

    Dolphin Senior Member

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    C8lRjE_XYAEG3Re.jpg large.jpg
     

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