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NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

Discussion in 'General ME/CFS News' started by Cheshire, Mar 18, 2017.

  1. Yogi

    Yogi Senior Member

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    Here is the original nyt tweet to retweet etc







    Significant. BABCP trying to jump ship, or trying to ride two horses at once?

    Hypocrisy in action. Check it out.





    http://www.babcp.com/Default.aspx

    Trudy chalder headed up BABCP in past.
     
    Last edited: Mar 18, 2017
  2. Yogi

    Yogi Senior Member

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    Retweeted to 72700 followers




    Author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, NYT bestseller and winner of the Samuel Johnson Prize. Photo by Tanya Rosen-Jones.

    San Francisco
    stevesilberman.com
    Joined January 2009
     
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  3. Murph

    Murph :)

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    Seems like it's in the print version as well as online:

    "A version of this op-ed appears in print on March 19, 2017, on Page SR4 of the New York edition with the headline: Wrong on Chronic Fatigue."

    Which is great as a sign they're giving it real coverage. I am very happy!!

    If I may, as a writer, register a small complaint it is that the writing is a little too dense to reach a vast lay audience.
     
    Last edited: Mar 18, 2017
  4. Yogi

    Yogi Senior Member

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    Does anyone know if the NYT paper version can be bought in the UK?

    Would be great way to show thanks to NYT and to keep the paper copy as it is a big moment in destroying Pace given the circulation and respect that the NYT has.

    Been waiting for years for this 30 year scandal of wessely and his partners in crime to breakthough in major news media.
     
    Last edited: Mar 18, 2017
  5. CFS_for_19_years

    CFS_for_19_years คภภเє ɠรค๓թєl

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  6. Forbin

    Forbin Senior Member

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    The 2011 David Tuller article in the NYT that Julie Rehmeyer refers to can be found here.

    The article is broadly about the importance of accurate case definitions of illnesses. It specifically uses the PACE trial as an example of where the use of an insufficiently narrow case definition (Oxford) could impact the treatment of subgroups who happen to fall under that definition.

    The PACE authors responded that the trial was also judged effective in participants who had met two other (unnamed) definitions "favored by some scientists." They concluded by answering a question raised in Mr. Tuller's original piece:
    Tuller countered:

    Little did Mr. Tuller know how much more there would be to write about concerning this study.

    [Does anyone know what those "two other definitions" of CFS were, or if those results were reported?]
     
    Last edited: Mar 19, 2017
  7. Sasha

    Sasha Fine, thank you

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    BTW, BABCP is the British Association for Behavioural & Cognitive Psychotherapies and tags itself as "The lead organisation for CBT in the UK" so its retweet of this appears significant.
     
  8. A.B.

    A.B. Senior Member

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    At some point, when a critical mass of awareness is reached, nobody will want to be associated with CBT/GET for CFS or PACE anymore. Especially when it becomes apparent that there is a real risk of deterioration and harm, and how much dishonesty and incompetence was involved.

    We have to keep working on raising awareness of the problems.
     
    Last edited: Mar 19, 2017
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  9. Snow Leopard

    Snow Leopard Hibernating

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    The real news will be the Psych Med paper being retracted.
     
  10. Barry53

    Barry53 Senior Member

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    Incidentally I think the artwork accompanying this article, by Jacqueline Tam, is superb and thought provoking and could itself help some people perceive ME/CFS differently. A sort of quasi-sleeping beauty syndrome, where a person is overwhelmingly locked down into minimal activity/interaction, and can only observe rather than engage.

    Edit: When I wrote the above I had missed Aurator's earlier post commending the artwork. In fact Aurator spotted what I missed re the doctor :redface:.
     
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  11. Barry53

    Barry53 Senior Member

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    Exactly. We are in the midst of a transition, history in the making, and such times are often hard to perceive in the time. Your phrase "critical mass of awareness" is spot on; the point at which the snowball has had its last push, after which it carries on down the slope on its own. The more public awareness perceives the reality of ME/CFS, and the role PACE and its authors have played, the nearer the point where advancing towards truth and justice will become self-sustaining, carried along by its own mass of public awareness.

    Your phrase "nobody will want to be associated with CBT/GET for CFS or PACE anymore" is also crucial; I think that is becoming evident and playing out now. Such behaviour tends to be exponential - each act of dissociation from PACE itself encouraging/provoking further such acts of dissociation - the snowball effect. It becomes unstoppable (PACE authors and proponents please note).

    We would never have got anywhere near this point without "working on raising awareness of the problems", and now is the time, more than ever, to keep on with that. The race is not won until it is done, and you have to continually strive for the winning post until it is.
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

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    really good news. A couple of missed opportunities to highlight the science though. I get the link to viral onset to tie in with the publication of the letter but they could have made more of key science links to dysfunctional metabolics etc. A lay person would ask ...so what is it then? Reading this, they may be given the impression that it was virus that needs treating.

    The significance of this is an enormous step forward...I hope the British press pick up on it particularly the link to the government considering GP cost saving in the NHS via carting us all off to MUS clinics to receive psychotherapy (ever hopeful).
     
  13. A.B.

    A.B. Senior Member

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    I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.

    There is still a lot of PACE data that hasn't been investigated independently. This includes audio tapes of patients speaking with therapists. Do these tapes contain evidence of harm? Is this why PACE authors are desperately trying to "protect patient anonymity"?
     
    Last edited: Mar 19, 2017
  14. Barry53

    Barry53 Senior Member

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    I hope so. Honest mistakes are one thing, but wilful arrogant pursuance of strategies that put self interests ahead of patient safety, should at the very least warrant a public enquiry. There has never been any solid proof that GET does not risk harm, and in any other safety-implicated field, that would be enough to preclude its use until there was such proof.
     
  15. user9876

    user9876 Senior Member

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    The problem is who would the legal action be against.

    But that is one of the reasons for pointing out the flaws. The authorities cannot say we just looked at what the best science was at the time because they dismissed patients pointing out flaws without putting any serious thought in. So we have the MRC who failed in any governance role to ensure that PACE was correctly reported; we have NICE who failed to take account of the issues with PACE and other trials (particularly over patient reports of harm and only subjective improvements). We then have QMUL who failed to provide proper governance over PACE and spend considerable sums of money to keep data secret so as not to expose the issues. We also have the SMC, SAS and doctors professional bodies who were happy to push a line (or support those with the line) that stigmatized patients by saying they were anti-science nutters who just harassed scientists to deny that ME is psychological. Such view are pervasive and yet would be frowned on if you changed the group to any other patient or minority group.
     
  16. arewenearlythereyet

    arewenearlythereyet Senior Member

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    There must be a lot of people who could claim. I guess without independent testing immediately prior to and after the "treatment" it would be difficult to prove one way or another. The best way would be for a study to show that GET definitely does harm....this would still rely on mainly anecdotal evidence (backed up by the latest scientific theory) so any study would have to have a load of respondents (500 plus?). Any court could then refer to this and this could unlock any claims by simply proving you received the treatment. A bit like PPI insurance. Sadly we don't yet have that crucial piece of evidence. I wish we did.
     
  17. Barry53

    Barry53 Senior Member

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    I think a public enquiry would be a good start.
     
  18. slysaint

    slysaint Senior Member

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    This will be the 'big one'; but I doubt it will get front page unless it's in the context of the damage done to the scientific community in the UK.
    But we live in hope................:)
     
  19. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    For people on Facebook, here is the link to the official post from the NY Times, https://www.facebook.com/nytopinion/posts/1630953536919596

    ETA: We need to give this as much exposure as possible, to "reward" the NY Times for printing it, so even if you've shared the article already please consider sharing this post as well.
     
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  20. Chrisb

    Chrisb Senior Member

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    It's just a pity that Mark Thompson did not encourage such views when DG of the BBC.
     
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