PACE trial TSC and TMG minutes released

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by JohnTheJack, Mar 23, 2018.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    I am going to put something together on the objective measures at some point, but it's taking a while to get my brain in gear. In the meantime, here are all the mentions of The Lancet in the TMG/TSC minutes:
     

    Attached Files:

  2. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    Thanks for that. The more of these I read, the more I think that I need to go through them methodically myself.

    Yeah.... they were careful.

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext
     
  3. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    I've put Tom's comments on the PACE trial protocol all together into a PDF (with ref links) for ease of access, with @Tom Kindlon 's permission. Hope this is useful.

    Let me know if you spot any glaring errors, and I shall fix forthwith.

    [ @Woolie - Is this suitable to be added as a resource in the Science Library, maybe here https://www.s4me.info/threads/publications-from-the-pace-trial.60/ ?]
     

    Attached Files:

    Last edited: Apr 18, 2018
  4. Woolie

    Woolie Senior Member

    Messages:
    2,922
  5. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    Would it be useful to add a link there? I can't do it myself, because I don't have the necessary permissions.
     
    Woolie likes this.
  6. Woolie

    Woolie Senior Member

    Messages:
    2,922
  7. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    Thanks @Woolie

    (sorry if I seemed impatient. It's a bad trait)
     
    Last edited: Apr 22, 2018
  8. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
  9. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    Just noticed this in TMG minutes #4, re withholding/excluding treatments specific to CFS:

    TMG4_putativetreatments.png
    Thoughts?
     
    Inara, mango, Sly Saint and 9 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    It looks like a series of disconnected statements with a couple of grammatical errors to me. Presumably they thought that standard medical care should not include treatments that had been claimed to have an effect on CFS, even if without formal evidence. Which seems to imply that standard medical care really means b***** all.

    I would love to know what trial equipoise is. Never heard of it.
     
  11. Sarah

    Sarah Senior Member (Voting Rights)

    Messages:
    1,510
    From the ABC interview:

    "Norman Swan: What were the doctors doing for them?

    "Michael Sharpe: The doctors also had guidance on what to do and they do some very important things. The first thing, obviously, is to be clear with the patient what's wrong with them; then to give them some general guidance on not overdoing things but not resting too much; and if the patient wanted to assume a self-help approach, providing materials and support in doing that. The doctors would also prescribe medication for conditions such as pain, sleep problems and depression."

    "
    Not overdoing things but not resting too much". This sounds like pacing advice.

    Would be interesting to know who "equipoise" usage started with.
     
    Inara, Woolie, MEMarge and 4 others like this.
  12. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    4,789
    I know the minutes for the first couple of meetings were drafted by Sharpe. It's possible he did them all, though it's not publically (sic) known. He uses 'equipoise' in his (false and misleading) COI statement.
     
    Inara, Woolie, EzzieD and 5 others like this.
  13. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    I guess by "trial equipoise", they are trying to indicate that they are not favouring any particular treatment over another, but I'm not sure they really had any control over their own implicit biases in that way.

    wrt to the prescriptions, I though it was interesting that they noted that there were "putative" treatments for "CFS" already out there. (Did they meant potential rather than putative?)
     
  14. Sarah

    Sarah Senior Member (Voting Rights)

    Messages:
    1,510
    By putative, I think they probably meant supposed treatments and don't take it to be an admission of potential efficacy.
     
    Woolie, MEMarge, Trish and 3 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    It seems that there is a technical definition of 'clinical equipoise' in relation to trials which boils down to the idea that you should only test two options in a trial if the expert community is genuinely undecided about which is best. I am not sure what this has to do with the minutes usage because I am not clear what they are saying.
     
    Cheshire, Woolie, Barry and 6 others like this.
  16. Sarah

    Sarah Senior Member (Voting Rights)

    Messages:
    1,510
    Are we going to need to start a "usage" usage thread @Jonathan Edwards?
     
    Invisible Woman and Barry like this.
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    Like 'Usage tomato and Isage tomAto?

    Sorry, it just came into my head somehow.
     
    Cheshire, Amw66, Woolie and 5 others like this.
  18. Sarah

    Sarah Senior Member (Voting Rights)

    Messages:
    1,510
    Too much to-meta (tomato) for me. Sorry, that really was terrible.
     
    Cheshire, Woolie, Barry and 1 other person like this.
  19. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,420
    Works for me :)
     
    Sarah likes this.
  20. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,498
    Location:
    Mid-Wales
    This from Wessely's book on Clinical Trials...

    wessely_equipoise_1.png
     

Share This Page