Trial By Error: A Letter to Archives of Disease in Childhood

Discussion in 'General ME/CFS news' started by Daisymay, Jan 30, 2018.

  1. Daisymay

    Daisymay Senior Member (Voting Rights)

    emma, mango, ahimsa and 44 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Inara, sea, MEMarge and 29 others like this.
  3. Allele

    Allele Senior Member (Voting Rights)

    Impressive list of signatories!

    ETA: x-posted with @NelliePledge
    Inara, sea, MEMarge and 23 others like this.
  4. Cheshire

    Cheshire Moderator Staff Member

    Inara, sea, MEMarge and 27 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

    prof. Vincent R. Racaniello
    Lisa F. Barcellos, MPH, PhD
    Robin Callender Smith, Phd
    Lily Chu, MD, MSHS
    Ronald W. Davis, PhD
    Jonathan Edwards, MD
    Valerie Elios Smith
    Rebecca Goldin, PhD
    Leonard Jason, PhD
    Michael Kahn, MD
    Nancy Klimas, MD
    Bruce Levin, PhD
    Steven Lubet
    Marlon Maus, MD, DrPH, FACS
    Patrick McKnight, PhD
    Zaher Nahle, PhD, MPA
    Philip Stark, PhD
    John Swartzberg, MD
    David Tuller, DrPH
    William Weir, FRCP
    Carolyn Wilshire, PhD

    Thank you!
    Samuel, mango, TiredSam and 31 others like this.
  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Let's hope that this flawed SMILE study proves to be the reductio ad absurdum of the BPS mistreatment of ME and at last the PACE appologists and their establishment enablers are forced to step back from their irrational faith in unblinded trials relying on self reported measures.

    It is heartening that the list of academics supporting such as this letter continues to grow.
    TiredSam, Inara, sea and 26 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Brilliant letter. Great list of signatories.
    Inara, sea, MEMarge and 15 others like this.
  8. Trish

    Trish Moderator Staff Member

    This has cheered me up. Excellent letter.
    I wonder whether copies should be sent to Bristol University and to the Ethics committee that approved the trial and the changes to the protocol.
    Inara, sea, MEMarge and 21 others like this.
  9. Alvin

    Alvin Senior Member (Voting Rights)

    I would
    Inara, sea, MEMarge and 9 others like this.
  10. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Thanks to the signatories.
    Inara, sea, MEMarge and 15 others like this.
  11. Esther12

    Esther12 Senior Member (Voting Rights)

    Thanks to all the signatories, and of course to Tuller for organising this. I wonder what response there will be?
    Inara, sea, Samuel and 16 others like this.
  12. Alvin

    Alvin Senior Member (Voting Rights)

    I'm taking bets on nothing (40%), denials (60%) or other (25%)
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    If the previous form of other 'establishment' responses is anything to go by, they will select something that was not in the letter and respond to that or deliberately misunderstand a point in the letter and respond to that misrepresentation, but ignore all the main points. They may also add the claim that all these points have already been adequately dealt with elsewhere, so don't need to be answered again.

    However the letter is very heartening and there might actually be an honest response. Journals and Universities can not go on ignoring clear and valid points for ever.
    TiredSam, Inara, sea and 28 others like this.
  14. Amw66

    Amw66 Senior Member (Voting Rights)

    Just forwarded the link to Carol Monaghan MP who raised COI in research as issue for parliamentary committee looking into research . She can keep it up her sleeve
  15. Esther12

    Esther12 Senior Member (Voting Rights)

    I also thought that this works as a useful summary of problems for those who do not need some of the scientific terminology explained to them. Tuller's previous blogs on this needed to be really long, partly because things needed to be explained in a way that a general audience could understand. The brevity of this letter might encourage more researchers to read it, and take an interest?
  16. Revel

    Revel Senior Member (Voting Rights)

    @Alvin, will you be swapping the odds around if it starts to look like you might lose money on the result? :rofl:
  17. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    As a child I was an "adult pleaser" (probably not unusual). I would usually tell adults what they wanted to hear, rather than tell the truth, if there would be no immediate consequences to doing this. It was so much easier than disagreeing with them.

    If I was a child enrolled in something like LP, and had adults telling me I must never say I had ME or CFS or must never say I was fatigued or tired, then when asked how I felt 6 or 12 months later by people involved in the same study, I would have done exactly what I always did when I was young. I would have taken the easy way out, and answered with what the adults wanted to hear.

    In any study that involves teaching children they must lie to themselves and others, how can anyone involved in it ever know how they (the participants) truly feel? As far as I can see the results will always be nonsense.
    fossil, TiredSam, Inara and 27 others like this.
  18. Valentijn

    Valentijn Guest

    Very clear and to the point. I also like that the demanded action is relatively mild and very reasonable. No one could rationally object to it:
    mango, Inara, sea and 25 others like this.
  19. Adrian

    Adrian Administrator Staff Member

    I do wonder if a complaint to the ethics committees would be a good idea. I think the Exeter ethic committee acted inappropriately in converting a feasibility study to a full trial (and doing so via a subcommittee of 2 people). I think the ethics committee should have bounced the changes and said its a new trial reapply. But then its not a new trial but it is being presented as one but under the same ethics approval as the feasibility study. Its all very dodgy.
    Inara, sea, Webdog and 20 others like this.
  20. Alvin

    Alvin Senior Member (Voting Rights)

    Of course, i learn from the best in reality denial :emoji_japanese_goblin:

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