1. Guest, click here and read the 'News in Brief' post for w/c 8th July.
    Dismiss Notice

Watt from MRC defends PACE in letter to Times

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

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    4,704
    Likes Received:
    49,311
    Well, if the word on the street here is that he is a good egg I might have a go at contacting him. Since LSHTM has an excellent biomedical ME research group and is part of UCL and fur is flying in the public domain there are probably enough excuses for me to approach him without him seeing me as SPAM.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    4,704
    Likes Received:
    49,311
    @Robert 1973 has alerted me to a book 'Psychology in Crisis' coming out that mentions PACE and a few of us. I think everyone on S4ME should get a copy.
     
    janice, Liessa, Indigophoton and 27 others like this.
  3. Andy

    Andy Committee Member & Outreach

    Messages:
    6,720
    Likes Received:
    50,009
    Location:
    Hampshire, UK
    Might be this?
    http://amzn.eu/d/gAGPn5z
     
  4. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,048
    Likes Received:
    19,351
    Location:
    UK
    At £25 a pop, I think Palgrave (the publisher) should have produced an e-version so that the public, as well as academics (presumably the target for the paper version) could have a look too.
     
    Indigophoton, WillowJ, Simone and 9 others like this.
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    6,720
    Likes Received:
    50,009
    Location:
    Hampshire, UK
    Yeah, I'm not keen to pay that kind of price.

    The author is on Twitter here, https://twitter.com/b_m_hughes?lang=en, if any Twitter user wants to check that it is the correct book and to see if he can convince his publisher to produce an e-book version.
     
    Indigophoton, WillowJ, Simone and 9 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    13,579
    Likes Received:
    74,444
    Location:
    UK
    Just had a look on Amazon. Costs £25.
    Psychology in Crisis by Brian Hughes.
    From the preview I like his terminology: ''Rampant methodological crisis'' - describes how psychologists invent their own study methods, change them part way if the data don't fit their preconceptions, misuse stats etc etc. Sounds familiar.
     
    inox, janice, Indigophoton and 20 others like this.
  7. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    1,807
    Likes Received:
    13,497
  8. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    1,873
    Likes Received:
    12,943
    Apparently the author has held a visiting academic appointment at King's College , London.
     
    Indigophoton, Simone, MEMarge and 6 others like this.
  9. Mark Vink

    Mark Vink Established Member

    Messages:
    18
    Likes Received:
    248
    @JohnTheJack, @Jonathan Edwards
    Great letter I couldn't sign it because I only saw it this morning. I do not have a subscription to the times how can I post the following comment ?

    Sir, according to Professor Fiona Watt, Executive chairwoman, Medical Research Council, there was nothing wrong with the PACE trial as it "was funded following expert peer review, was overseen by an independent steering committee, and its published findings have also been independently peer-reviewed."

    Yet according to the trial itself, 11 months after the trial began, they changed the entry and recovery criteria which created an overlap in being ill enough to take part and being recovered at the same time to the point that 13.3% of participants were already recovered according to one or two of the recovery criteria before receiving any treatment and without a change to their medical situation. This should never have happened in a properly conducted trial. It should also never have passed a properly functioning independent steering committee or properly functioning independent peer review either. No wonder that this trial was called "one of the biggest medical scandals of the 21st-century" in UK Parliament. It's a shame that Professor Watt blames the patients instead of acknowledging the severe problems of the PACE trial.

    Mark Vink, family and insurance physician. I was nominated for the 2016 John Maddox prize for standing up for science for my PACE trial review.
     
    Maggie, inox, janice and 42 others like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    13,579
    Likes Received:
    74,444
    Location:
    UK
    I'm not a subscriber either, but I found this:

    https://login.thetimes.co.uk/links/contact
    • Letters*: letters@thetimes.co.uk
    • * for publication only; please include postal address and daytime telephone number
    Edit to add: Very good letter, @Mark Vink. I hope they publish it.
     
    Maggie, janice, Indigophoton and 19 others like this.
  11. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    424
    Likes Received:
    5,455
    Location:
    UK
    No I didn’t! Must have been someone else but thanks for alerting me.

    Just to add that I fully support @JohnTheJack’s letter, although, for the reasons @Dolphin suggested, I decided to submit my own.
     
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    769
    Likes Received:
    5,296
    Location:
    betwixt and between
    The book fits this thread's topic perfectly...

    From p. 140:
     
    inox, janice, Indigophoton and 14 others like this.
  13. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    948
    Likes Received:
    5,685
    Location:
    Australia
    Exactly. CBT has been shown to be effective at changing cognitions in CFS patients, at least when it comes to answering questionnaires. The problem is that questionnaire answers are biased in unblinded trials and there has been a lack of evidence of objective improvements in disability. Sharpe and others keep saying that they use questionnaires because the illness is subjectively defined and that it is the subjective experience of patients that matters to patients. But we are the patients, he has no right to make that claim when we are the ones asking for objective evidence for a reduction in disability.
     
    Maggie, janice, Indigophoton and 18 others like this.
  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    798
    Likes Received:
    7,796
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    4,150
    Likes Received:
    24,929
    Should someone tweet Sharpe to ask him if he has read the book? :laugh:
     
    Maggie, janice, Indigophoton and 21 others like this.
  16. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

    Messages:
    424
    Likes Received:
    5,455
    Location:
    UK
    Another potential signatory to @dave30th Open Letter to The Lancet:


     
    Maggie, inox, Indigophoton and 26 others like this.
  17. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    1,391
    Likes Received:
    8,051
    Location:
    Liverpool, UK
    Ordered the book. Arrives on 30th August. Really looking forward to reading it! :) Oh, I followed Brian Hughes on Twitter, within a minute he followed me back and also re-tweeted a thing I'd posted on The Case against Mars Colonisation from the Grauniad. So he seems to be a friendly person. :) Perhaps we should invite him to join us here?
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    4,704
    Likes Received:
    49,311
    Your'e right, it was @BurnA. Apologies to all.
     
  19. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,574
    Likes Received:
    13,045
    From the book, p137, last sentence, 2nd last para:

    "In short, rather than taking steps to avoid the threat of participant expectancy bias, the PACE Trial authors could hardly have done a better job had their intention been to actively cultivate such an effect (Edwards, 2017)."

    Well, exactly.
     
    Maggie, inox, janice and 27 others like this.
  20. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    879
    Likes Received:
    5,357
    MRC now have lengthier response on their website. Below for link. My response is this:
    Well regurgitated, lengthy BS doesn’t make it any better. As boris johnson said eloquently “you can’t polish a ****”. I think we are all getting very weary of the establishment defences, refusal to engage with legitimate criticism, patient blaming and their woefully underfunded massive umbrella CFS approach
     
    Binkie4, Maggie, janice and 16 others like this.

Share This Page