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Watt from MRC defends PACE in letter to Times

Discussion in 'General ME/CFS News' started by JohnTheJack, Aug 27, 2018.

  1. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Am I wrong to be worried that this attitude is going to have a knock on impact on any possibility of getting MRC to actually fund biomedical ME research. They say they support CMRC, Chris Ponting talked about a window of opportunity is that still ajar?
     
  2. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I've just been looking at that site: First, only researchers at institutions can access it, and it was you patient scientists who revealed the flaws in PACE. Second, any new analysis has to be set out beforehand, so no digging around in the data to sniff out problems, and the data cannot be used for any other reason. Three, this analysis has to be approved beforehand.

    It's data-sharing, but...
     
    Binkie4, Maggie, janice and 22 others like this.
  3. dave30th

    dave30th Senior Member (Voting Rights)

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    During the FOIA tribunal they used it as an example of someone so concerned about confidentiality that she withdrew her data--in other words, they used it to support her argument. In fact, the only confidentiality she was worried about was that she was in dispute over disability and the PACE authors had connections with insurers. So she was worried her information could leak from the trial to her insurers. I'm not sure where or if White talked about it, but both he and Chalder tried to get her to change her mind.
     
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    What would be the point of trying to get an unwilling participant to change their mind when subjective measures are used? they could simply give false responses to try to screw up the results.
     
  5. dave30th

    dave30th Senior Member (Voting Rights)

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    The participant that I know of who withdrew did it after she had finished the trial. That's when she found out they had links to disability insurers. So they already had all her data. That's why they claim it took months to recover from the removal. I fail to understand how, with computers, removing one person's data would take a team on a big trial "months" of work, but that's what the claim is, I guess. I'm not sure who the second person referenced in that paragraph is. The 2011 paper itself only shows one person's data removed after completion.
     
  6. AR68

    AR68 Senior Member (Voting Rights)

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    Again, I'm not reading all the posts etc so forgive me for perhaps a touch of repetition but any potential letter being considered in reply to The Times should point out that the allegation of harassment on the level that Watt and others have repeated was questioned in the PACE tribunal and, arguably, very much worked against the case put forward by QMUL.
     
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    They have a track record of exaggerating.
     
  8. Lucibee

    Lucibee Senior Member (Voting Rights)

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    There would have been reams and reams of paper data collected too, and audio records of all therapy sessions etc. And it would have been anonymised too. Probably quite an exercise to make sure they hadn't expunged the wrong participant.

    But it's a condition of consent - so they should have had procedures in place to deal with that.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think you are probably wrong to worry. However much they dig heels in on PACE the possibility of letting themselves off the hook by funding some decent biology will be attractive to them. After all, they do not want activism to discourage people from researching ME.
     
  10. Wonko

    Wonko Senior Member (Voting Rights)

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    A demarcation issue perhaps? They apparently see it as their job to stop people researching ME and "activists" may threaten their exclusivity?
     
  11. Andy

    Andy Committee Member & Outreach

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    Spoonseeker has sent a letter direct to Watt.
    Read more at https://spoonseeker.com/2018/08/29/letter-to-professor-watt-of-mrc/
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    When trial investigators glibly and wilfully twist the truth so deceitfully, it seems almost inevitable that how they report their trials' findings is likely to be of the same ilk.
     
  13. Hutan

    Hutan Moderator Staff Member

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    That's a great letter by Spoonseeker.

     
  14. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Binkie4, Maggie, janice and 15 others like this.
  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Is it on The Times too? It might get ignored on a blog.
     
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    There has been correspondence on the MEA fb page today requesting the MEA to write to the Times about the inaccuracies about patients in Fiona Watt’s statement




    CS has recently posted the following.

    “A letter has been sent by The MEA to The Times this afternoon. I will not disclose the wording right now- as some newspapers do not like pre-publlication of letters to the editor. CS“

    EDIT: layout, punctuation
     
    Last edited: Aug 31, 2018
  17. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Let’s hope they go gung ho on the getting off the hook front then £££££££
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Institute of Psychiatry tweeting the MRC statement, and quoting from the Watt's letter on "it is important that researchers are not discouraged from working on [CFS/ME]"

     
  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have no idea what MEA will be putting in its letter to the Times but I hope it includes something to the effect that this is an inaccurate characterisation of pwme, that we are being traduced.

    ETA: grammar
     
    Last edited: Aug 30, 2018
  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Last edited: Aug 30, 2018

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