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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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PRESS RELEASE - Magical Medicine: How to make a disease disappear

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Jan 3, 2010.

  1. shrewsbury

    shrewsbury member

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    Magical Medicine: How to make a disease disappear - Hooper and Williams - Spring 2010

    Stephen Ralph's post to co-cure of Jan 2 10

    Magical Medicine: How to make a disease disappear - Hooper and Williams - Spring 2010

    (if:) I'm a Canadian, quite uninformed about the PACE Trials - and while my heart and thoughts are with you UKers, my brain and body are not up to following too closely right now. But this developing list looks like it could be of use to all of us if we have medical practitioners that need some "proof" that ME/CFS is a"real" organic disease.

    (SR:)Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.

    These documents form part of a more substantial document that has the provisional title Magical Medicine: How to make a disease disappear.

    This document has a dedicated web page at: http://www.meactionuk.org.uk/Magical-Medicine.htm

    This web page will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.

    Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.

    -----------------

  2. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Love this title. Will investigate their postings more tomorrow.

    Thanks, islandfinn. And thanks for all the new info you're bringing here. I'm reading it all (almost).
  3. Lily

    Lily *Believe*

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    Sounds like a winner to me! Too bad I'm running out of steam right now. So I'll get 'er tomorrow!
  4. xanadu

    xanadu

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    Magical medicine

    The guy on the right works the Institute of Psychiatry, Kings College London, aided by his loyal dog. The guy on the left works his own pitch in Edinburgh. Here they are working a pitch together, at a crucial DSM-5 meeting on somatoform disorders.

    [​IMG]
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    East Coast
    Xanadu!

    LOLOLLOL at your picture!!!:D:D:D:D:D:D:D
    :):):):):):):)


    Not funny, of course, I am still very impressed with all of the severely ill people on this list who have been able to maintain their senses of humor.

    Hope the New Year will be better for all of us.

    Take care,

    Maxine
  6. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    This is good to see. Thanks for posting that IF and your picture is perfect Xanadu.
  7. Herbiv4

    Herbiv4

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    MEActionUK PRESS RELEASE:-

    Professor Malcolm Hooper has today made a formal complaint to The Rt Hon The Lord Grayson and to the Medical Resarch Council about issues relating to the UK PACE Trial.

    The document below blows the lid on the techniques and tacttics used and it includes some really useful and interesting information for anyone in the ME community who wants to be aware.

    Magical Medicine: How to make a disease disappear

    http://www.meactionuk.org.uk/magical-medicine.htm

    The document Magical Medcine is 442 pages long and for now it is presented in .pdf format.

    You can download it from any of the links on the above web page.

    Or you can download this document directly from...

    here....

    http://www.meactionuk.org.uk/magical-medicine.pdf

    File Size 6Mb

    Please let others know about this. When you read the document; you will know why :eek:)

    Thank you.
  8. Herbiv4

    Herbiv4

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    Alternative download sites for Magical Medicine

    Please repost

    Magical Medicine: How to make a disease disappear

    From Professor Malcolm Hooper

    http://www.meactionuk.org.uk/magical-medicine.htm

    Alternative download links

    The file is in .pdf format and 6Mb and 442 pages long.

    http://tinyurl.com/yega4hr

    http://tinyurl.com/yzza82x

    http://tinyurl.com/y9n3bll

    http://tinyurl.com/yaevy8o

    http://tinyurl.com/yzruptn

    http://tinyurl.com/yjxts39

    http://tinyurl.com/yhunue6

    http://tinyurl.com/yjtw26x

    http://herbiv4.wordpress.com/

    http://magical-medicine.blogspot.com/
  9. Nina

    Nina Senior Member

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    Great document, all the good info in one place!
  10. starryeyes

    starryeyes Senior Member

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    Ooooooooooooooo! This is sweet! It's nice to wake up to this this morning. :) Wahoo! Thank you herbi4. I got some reading to do now...
  11. Nina

    Nina Senior Member

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    Do we expect this to get picked up by newspapers? Or how can we make sure that as many people as possible are going to read this?
  12. Herbiv4

    Herbiv4

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    Hi there,

    People from my group are contacting newspapers but the more that do so the more chance there will be of the newspapers taking notice.

    Also, if you think this document would be interesting to anyone you know then let them know :eek:)

    If you know any groups who might want to host this document along with the Press Release describing it's purpose then that would help as well.

    Thanks,

    Stephen.
  13. bullybeef

    bullybeef Senior Member

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    North West, England, UK
  14. Nina

    Nina Senior Member

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    Who would I have to contact to ask for permission to translate parts of it and make them available to German groups?
  15. Tammie

    Tammie Senior Member

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    Woodridge, IL
    wow- that is quite a wonderful publication!! haven't finished reading all the way, but so far, really, really great!!!!
  16. jahoolie

    jahoolie

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    east midlands,uk
    how to make a disease disappear:press release

    Magical Medicine:

    How to make a disease disappear



    PRESS RELEASE: MEDICAL RESEARCH COUNCIL

    12th February 2010



    A formal complaint has been lodged by Professor Malcolm Hooper with the Rt. Hon The Lord Drayson, Minister of State with responsibility for the Medical Research Council (Science and Innovation) about the PACE Clinical Trial of behavioural modification interventions for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).

    PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.

    The MRCs PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.

    Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it -- that CFS/ME is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation.

    In 1992, the Wessely School gave directions that in cases of ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described by Professor Simon Wessely as merely a belief; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as the undeserving sick.

    The complaint is supported by a 442 page Report which addresses areas of major concern about the PACE Trial.

    These include apparent coercion and exploitation of patients, flawed methodology, apparent lack of scientific rigour, apparent failure to adhere to the Declaration of Helsinki, the unusual personal financial interest of the Chief Investigator, the vested financial interests of the Principal Investigators and others involved with the trial and the underlying non-clinical purpose of the trial.

    The psychiatrists unproven beliefs and assumptions are presented as fact and trial therapists have been trained to provide participants with misinformation; therapists have also been trained to advise participants to ignore symptoms, a situation that may in some cases result in death.

    There are some extremely disquieting issues surrounding the MRC PACE Trial and documents obtained under the Freedom of Information Act allow the full story to be told for the first time.

    People with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those who suffer from other classified neurological disorders. As shown in the Report that accompanies the complaint, the MRC PACE Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.

    The Report can be accessed at http://www.meactionuk.org.uk/magical-medicine.pdf

    File Size 6Mb

    Adobe Acrobat format

    CONTACT: Professor Malcolm Hooper Tel. +44 191 528 5536



    See alternative download sites below





    Letter of complaint to the Rt Hon The Lord Drayson



    Professor Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC

    Sunderland
    SR3

    11th February 2010
    The Rt Hon The Lord Drayson
    Minister of State
    (Science and Innovation)
    1, Victoria Street
    London
    SW1H 0ET



    Dear Minister

    re: Complaint about the Medical Research Council

    It is with deep concern that I lodge this formal complaint about the Medical Research Council with you in your capacity as Minister with responsibility for the MRC.

    You will doubtless be aware of the serious problems at the MRC that were documented in the 2003 Report of the House of Commons Select Committee on Science and Technology (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. MPs found evidence of poor planning and of focusing on politically-driven projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC.
    Sadly, very serious problems continue to exist at the MRC, with disastrous results for patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

    The attached 442 page Report addresses the background to the MRC PACE Trial on CFS/ME, the biomedical evidence that disproves the assumptions of the MRC trial Principal Investigators, the many extremely disturbing issues surrounding the PACE Trial, and illustrations from the Manuals used in the trial.

    The unproven beliefs and assumptions of the MRC Investigators are presented as fact; trial therapists have been trained to provide participants with misinformation, and therapists have also been trained to advise participants to ignore symptoms arising from the interventions, a situation that may in some cases result in death.

    Patients with ME/CFS do not seek any special consideration; they simply wish to be treated equally to those with other classified neurological disorders. As shown in the commissioned Report that accompanies this complaint (a bound copy of which will follow), the MRC Trial clearly demonstrates that people with ME/CFS are not treated equally to those with other chronic neurological disorders.

    Given the long-standing recognition that at least one of the interventions used in the trial is contra-indicated for people with ME/CFS, an intervention that is already known to have adverse effects on 50% of those who have already undertaken it, there is international concern about the MRC PACE Trial.

    I urge you to read the attached Report and to respond to it with due attention and alacrity. You may wish to know that the Report is already on international academic websites.

    Yours sincerely





    Magical Medicine:

    How to make a disease disappear



    Alternative download sites:

    (all files are in Adobe .pdf format)

    442 pages

    File size - Approx. 6Mb



    http://tinyurl.com/yega4hr

    http://tinyurl.com/yzza82x

    http://tinyurl.com/y9n3bll

    http://tinyurl.com/yaevy8o

    http://tinyurl.com/yzruptn

    http://tinyurl.com/yjxts39

    http://tinyurl.com/yhunue6

    http://tinyurl.com/yjtw26x


    http://herbiv4.wordpress.com/



    http://magical-medicine.blogspot.com/
  17. Marco

    Marco Old blackguard

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    Near Cognac, France
    Please EVERYONE. Try to read at least some of this document. This does not just affect the UK. Expect the same coming to the USA, Canada, Australia, New Zealand, continental Europe.

    I used to believe we were just suffering from misunderstanding and neglect, after browsing this I'm wondering if a criminal conspiracy at the highest level would be a better description.

    Every journalist who reported on the Lyn Gilderdale story should be made aware of this.
  18. Adam

    Adam *****

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    Not being involved in the 'CFS/ME world/community' ( more or less throughout my 13 year to life sentence) I saw it like that too. Misunderstood. At worst, neglected. Now I think we have been (excuse my use of the vernacular) shafted. But to show I am a good person, who believes in redemption not revenge, I promise to make at least one prison visit to all of the guilty parties, and, even though I am devout atheist (with deep admiration of many religious teachings), forgive them their sins .
  19. JAS

    JAS

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    I am writing to investigative journalists to see if they will run with this. Please would it be possible for those who have links about stories/video of how various CFS/ME sufferers have been mistreated which I can add to my email please could you post them here. I know there is a link for a short documentary made by Margaret Williams about Ean Proctor but i can't find it...any others? Like Adam I have not been involved within the CFS/ME community for very long either but I am already fed up with this Wessely bloke!
  20. Frickly

    Frickly Senior Member

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    Texas
    This is from page 36 and refers to a "Wessely Schools Training Video for Physicians (Training Physicians in Mental Health"). I think it is very frightening that this is the mind set.

    In the video, Tylee says: Is it important to sort of put somebody right if they believe its due to a virus? and Chalder replies:

    I mean I think its important to incorporate that belief in a more sophisticated model of understanding the illness than you would share with the patient. people think that theres something lurking in the cupboard as yet undiscovered that is creating the problem and of course thats I think in their mind a bit silly (sic). Its really important that patients keep a detailed diary of their activities so that you can then re‐order all of the activitiesWe know the degree of pathology is not necessarily correlated with the degree of disability.

    Professor Chalder seems to believe that patients and even their doctors can be difficult to brain‐wash with (and about) CBT, so she seems to have a strategy to overcome such difficulties.

    In Biopsychosocial Medicine edited by Peter White referred to above (chapter 12: Discussion: What are the barriers to healthcare systems using a biopsychosocial approach and how might they be overcome?), Trudie Chalder made a seemingly disturbing contribution: Rather than start with the physicians, which might be quite a difficult task, we could make a start with youngsters in schools. My experience is that they are much easier to educate. The only barrier is the parents. Once we have the child on our side we are in a very good position (http://www.meactionuk.org.uk/PROOF_POSITIVE.htm ).

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