Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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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. Murph

    Murph :)

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    Wouldn't it be nice to see a big legal win against QMUL create a funding stream for a whole lot of research somewhere else!
     
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  2. PatJ

    PatJ far and free I gaze

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    Canada
    First they ignore you,
    then they laugh at you,
    then they fight you,
    then you win.

    ―Mahatma Gandhi
     
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  3. alex3619

    alex3619 Senior Member

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    Gandhi would know.

    It misses the part where we laugh at them though.
     
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  4. Barry53

    Barry53 Senior Member

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    I find that with such people I cannot help laughing to myself about them throughout the whole process anyway.
     
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  5. A.B.

    A.B. Senior Member

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    If we look past the tragedy, It's quite funny how they are constructing "all in the mind" models describing something that mostly exists in their own minds but not the real world. Their model of CFS involves hysterical irrational patients living in fear of illness and deconditioning themselves. Reality is that patients typically learn to reduce activity levels by first making themselves worse because they underestimate the illness and are taken by surprise by PEM dynamics.

    Stories about mysterious psychosomatic illness and cures are constructed from simple methodological errors or flawed logic,ie. the dozens of unblinded studies with subjective endpoints that measure illness perception and therapies that revolve around changing illness perception. It's so absurd you couldn't make this up.

    How they consistently fail to consider simple and obvious explanations for an observations merely because it doesn't align with their psychosomatic beliefs, ie. membership of a support group correlating with illness severity is interpreted as support groups making patients sicker (by that logic, we should close all hospitals).

    How every thought and action on the part of the patient is interpreted as moral failure and irrationality, ie. the ridiculous idea that seeking treatment and believing to be ill is abnormal.
     
    Last edited: Mar 19, 2017
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  6. Sidereal

    Sidereal Senior Member

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    Wow never in my wildest dreams did I think I'd wake up one morning and see anti-PACE coverage in the newspaper of record. Thank you Julie and David.
     
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  7. Cinders66

    Cinders66 Senior Member

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    I'm continually baffled by how this pile of c**** which is the (B)PS model is shafting us all. The bio is ignored mostly in the writings of Wessely, White, Chalder, Wealden etc although the former have dabbled in it and generally we are treated as if we are essentially out of sorts through lack of activity and basically deluded. We aren't treated with the kindness sick people are or with the patience and decency I hope psychiatric patients are, it's a strange mix of not being worthy at all (as in organically physically ill or psychiatric) but instead presented as psychologically deluded, didficult, weak and wilfully physically inactive.


    It's easy to totally blame the BPS lot with their poor science and insistence on telling the world that all we need is their GET and CBT but it's not quite that simple. Way back around ten years ago Wessely was saying something like 1/3 of patients we can do nothing for, the FINE trial, with null results , was published around 2010 and yet MRC still haven't done much of worth for the severe and entrenched. Their refusal to draw in researchers with the lure of guaranteed ring fenced money whilst brazingky blaming patients supposed hostility for the lack of interest in the field goes unchallenged and now we have their giant sticking plaster of MEGA supposed to placate/distract us for the next few years. We need organised patient action against their organised inaction rather than waiting for isolated teams worldwide to find something that forces change.
     
  8. alex3619

    alex3619 Senior Member

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    Citation - wasn't it David Tuller who said that, without sanitizing? Will this be the eternal judgement of history?
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Can't help on that I am afraid but they have (or had) a copy in the Bellier Hotel in Val D'Isére this morning. It seems to have gone missing....
     
  10. sarah darwins

    sarah darwins I told you I was ill

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    You can buy back issues of the NY Times directly from them, though it's a bit of a hassle as it involves sending them a cheque.

    https://www.nytimes.com/content/help/backcopies.html
     
  11. alex3619

    alex3619 Senior Member

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    Anybody willing to write the musical: PACE, a dark comedy?
     
  12. slysaint

    slysaint Senior Member

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  13. Chrisb

    Chrisb Senior Member

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    Will you need as many changes of tempo as there were of pace?
     
  14. TiredSam

    TiredSam The wise nematode hibernates

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    You'll need a large choir for the villain to preach to.
     
  15. trishrhymes

    trishrhymes Senior Member

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  16. suseq

    suseq

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    Well said. And well done to Julie and David on their brilliant achievement. Thank you.
     
    Last edited: Mar 20, 2017
  17. Barry53

    Barry53 Senior Member

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    Will need to include a strong element of theatrical farce into the mix. Maybe even some science fiction?
     
  18. char47

    char47 Senior Member

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    well
    said AB
    so thrilled this article has made it through. what an achievment for J & D to get it in the PRINT!! edition of the NYT. huge thanks to them.
     
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  19. Esther12

    Esther12 Senior Member

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    Sunday NYT is great for coverage. Perfect. I wonder if PACE will respond? I wonder if it would be good for patients to try to send good letters in?
     
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  20. Cinders66

    Cinders66 Senior Member

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    The thing is what happens in USA isn't rocking boat in uk. It isn't just the PACE authors who won't want to u turn , but the journals, the NHS, the press like bbcs tom fielding who's presented the ilness as psychiatric and who've revelled in the "controversial illness /militants patients narrative '. No ones going to want to admit that the MRC and NHS and themselves had it wrong and that those Whiney people they were advising to exercise were actually very sick with legitimate grievance. And even the current head of the royal colleges of psychiatrists was actually completely wrong.

    It's like the church can't admit the Bible is wrong on homosexuality because then their and it's authority is diminished and up for question
     
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