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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. Keela Too

    Keela Too Senior Member (Voting Rights)

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  2. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I seem to remember Peter White talking about it as being a huge hassle - but I can't remember where - was it early during the FOIA tribunal? (I've checked the final docs, but it isn't mentioned there.)
     
  3. Stewart

    Stewart Senior Member (Voting Rights)

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    If your MP spoke in the recent Westminster Hall debate on ME, it could well be worth drawing their attention to the letter from Prof Watt and asking if they'd be prepared to write to her to convey:

    a) disappointment that she has publicly repeated unsubstantiated allegations against ME patients that were shown to be baseless at the Information Tribunal hearing in 2016.

    b) surprise that the MRC continues to stand fully behind this trial considering the numerous methodological flaws and the growing concern in the scientific community - especially given the fact that millions of pounds of public funds were spent on this study. The MRC's failure to engage with these issues in any meaningful way raises legitimate concerns about whether it is fit for purpose.​

    Professor Watt obviously isn't prepared to listen to privately well-reasoned concerns from people like Jonathan Edwards, but perhaps a bit of criticism from politicians will give her pause to reconsider.
     
    JellyBabyKid, Maggie, janice and 22 others like this.
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    betwixt and between
    from the MRC's website:
    from Merriam-Webster's website: https://www.merriam-webster.com/dictionary/some :
    ETA: Is there yet a more unspecific wording than saying "some" patients?
     
    Last edited: Aug 29, 2018
  5. Andy

    Andy Committee Member & Outreach

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    Facebook post from the MRC
    Code:
    https://www.facebook.com/MRCComms/posts/1386431784821427


    and tweet from them
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    Very interesting that that was the reason. Brings that issue into sharp (Sharpe?) focus.
     
  7. Barry

    Barry Senior Member (Voting Rights)

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  8. Barry

    Barry Senior Member (Voting Rights)

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    Yeah ... a bit like good science seems to be a huge hassle for them.
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes indeed did she get Sharpe to draft the letter for her it reads as if that’s the case
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    Reading the excerpt from @Brian Hughes' book made me think (it happens occasionally :)) that the bad-science psychiatrist' running trials, seem to fall into a trap of their own short-sightedness.
    1. They are trialing psychological treatments.
    2. There are psychological factors that can influence their trial design and methodology.
    They seem incapable of distinguishing between the two. As if they see the whole thing as a continuum, and the methodological psychological factors can just be bundled in with the treatment aspects. If it 'works' (i.e. gives the results they want) then they must have got it right ... :rolleyes:.

    They seem so wedded to their trials' greatness, and so blind to others' justifiable criticisms, I really do begin to wonder if this is what it is with them. Scientists who really do not understand how to run trials, psychological or otherwise. As if "If it's psychology, then we can do what we want with it's, because it all about psychology anyway isn't it?"
     
    Last edited: Aug 29, 2018
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Thanks. Could somebody download the file and attach it here or post it somewhere e.g. dropbox. I don't want to give my credit card details to Scribd.
     
  12. Adrian

    Adrian Administrator Staff Member

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    I think one of the most worrying things is that the MRC isn't even trying to understand what the criticisms are let alone address them. This shows that they have no intent of applying any form of governance to the research they fund and as long as there are reviews an a committee then no questions will be asked and support given. It would be different if the MRC were to address in detail the issues raised and explain why they think they are not issues (although I think they would struggle to do so). The statement really suggests they have not bothered to find out.
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    There are a few examples of this, but I can only remember the details of this one now.

    It looks like the page is now inaccessible, but here's a copy of White submission to a FOIA review that I copied previously. In the second to last paragraph he mentions the trouble of destroying these patients' data, although rather misrepresents the reason this was done (implying it was out of concern data would be released via FOIA):


     
  14. Stewart

    Stewart Senior Member (Voting Rights)

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    I think the MRC understands the criticisms perfectly well, but has decided that they don't want to acknowledge any responsibility for the failures of oversight that allowed the situation to occur and public funds to be squandered. If they admit that they messed up with PACE, people might start to wonder whether this was indicative of a wider problem and begin looking into how other trials were run or other aspects of the MRC's operation - and who knows what they'll find then.

    Like the Lancet and the BMJ, they seem to have decided the best approach is to vigorously deny that there's a problem while refusing to engage with the detail of the complaints, in the hope that the story will blow over.
     
    Binkie4, Maggie, janice and 16 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have emailed Stuart Pocock and he does not want to get involved.
     
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  16. Adrian

    Adrian Administrator Staff Member

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    They show no sign of understanding the criticisms because they are not addressed in any public statement and their statement would suggest that they are unaware of the methodological criticisms as they point to other trial results. It may be that they do understand and are just covering up but they show no evidence of having taken the trouble to understand. I think its more of a simplistic defense action to just bluster rather than spending time to understand.
     
  17. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Thanks, @Esther12 , that's the one I remembered.

    Seems a little different from the account given to @dave30th though.
     
  18. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Thanks for doing that. I feared as much. :(
     
  19. Adrian

    Adrian Administrator Staff Member

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    I suspect few academics in the UK who look towards the MRC for funding will want to get involved.
     
  20. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    And, that in itself, should be raising red flags all over the place. It seems to have become a political entity, where it's best to keep your mouth shut to keep in with them, rather than an council dedicated to good, rigorous research carried out in the interests of public health.
     

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