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PACE trial TSC and TMG minutes released

Discussion in 'PsychoSocial ME/CFS News' started by JohnTheJack, Mar 23, 2018.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    More evidence that the SMC group wasn't a control group (from TMG #15):
    TMG_15_SSMC.png
    *facepalm*
     
    janice, Jan, Joh and 12 others like this.
  2. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    According to the TMG minutes, the PACE trial sessions were to be blind reviewed by nurses from the FINE trial, whose views regarding ME/CFS patients were recorded during FINE as being very hostile at times:
    [​IMG]

     
  3. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Does anyone have back issues of the ME Association magazine from 2004? I'm trying to find the article that mentions the PACE trial from that time. It's mentioned in the TSC/TMG minutes, with accusations of a "concerted campaign" against the trial.
     
    adambeyoncelowe, Joh, Chezboo and 3 others like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    I don't, but I know these TSC minutes were previously released, so it could have been referring to these? [two sets of minutes posted in three posts]:

     
    Last edited: Mar 31, 2018
    Invisible Woman and JohnM like this.
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    (This set of minutes needed to be split over two posts itself - part 1)

     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,146
    Part 2 of the above minutes.

     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    There was this on the "MEA campaign to stop PACE and FINE":

     
    janice likes this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    In the above there was also this bit referring to "the TMGs struggle to find an objective outcome measure as requested by the TSC at their last meeting". It would be good to find the details of the discussions referred to, but I expect that the minutes don't include them.

     
    janice likes this.
  9. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Thanks @Esther12 - I have all those - I was asking for the ME Association magazine article from 2004 that they referred to.

    From TMG #10 - 15 Sept 2004
    From TMG #12 - 12 Oct 2004
     
    Last edited: Mar 31, 2018
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Ugh - I misread your post. I've done that a few times recently.

    I had anyway been thinking about drawing attention to those earlier releases, and seeing if they included info censroed from the new release.
     
    janice and Lucibee like this.
  11. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I've been searching through my emails from 2004 (this one 5th June) and was sent one from a member of the MEA. Still trying to find the statement which it refers to

    ""Our attention has been drawn to a public statement by the ME Association regarding the PACE trial, of which we are the principle investigators.

    We regret that no-one from the MEA contacted us to discuss these matters before publication. We would be willing to discuss your questions and concerns about the trial in person.

    If you would like to do this, please contact Dr. White, in the first instance.

    Yours sincerely

    Dr. Peter White

    pp Professor Michael Sharpe

    pp Professor Trudie Chalder."

    ++++

    Plus the MEA seem to have been busy that year

    (extract from another email)

    ....
    In July we met with Peter White, Michael Sharpe, Trudie Chalder et al
    to explain our objections in considerable detail. We have not had
    any change of mind since that meeting.

    A few weeks ago we explained our objections to the Medical Research
    Council.

    Last week I went up to the Department of Health to explain why the
    MEA remains opposed to the PACE and FINE trials.

    .....
     
    Last edited: Mar 31, 2018
  12. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I've tracked it down to the July 2004 issue of ME Essential - "MEA calls for PACE to be scrapped" (pages 3-4).

    Does anyone have a copy? [ETA: Update - I now have a copy - see here]

    It was mentioned in this extract from BJPsychBull in 2015:
    There may also have been further discussion in the October 2004 issue.
     
    Last edited: Aug 10, 2018
  13. Andy

    Andy Committee Member (& Outreach when energy allows)

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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Can @Russell Fleming advise?
     
  16. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Haven't read that paper in a while. It's awful in many ways, but a few things stood out:

    Despite what they say when dismissing the actigraphy, they clearly set out to improve 'fatigue and disability'.

    The analysis 'also addressed the potential clustering effects resulting from different numbers of patients being treated by the different therapists'.

    'These very high rates of follow-up were achieved as a result of the commitment of the participants and the assiduous work by the research staff. The strategies used by the latter included offering convenient interview times (including early evenings), mailing most questionnaires to allow sufficient time to answer them before interviews, paying travel expenses, following up non-attenders expeditiously by mail and telephone, offering to see the participants at their homes and, as a last resort, recording the primary outcomes over the telephone.'
    They visited patients' homes?
    No wonder there was a placebo effect: travel expenses, birthday cards, home visits...

    They decided 'to have the most appropriate discipline deliver each therapy' which 'ensured optimal delivery of each therapy by the therapists most likely to deliver these therapies in clinical practice', but then 'occasionally, it was necessary to train an existing therapist in a second therapy, which proved popular with those who did it'.

    They also push heavily their 'CFS treatment centres' and it was presumably there they were 'providing guaranteed employment beyond the trial, when possible'.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am surprised that they did not go on strike for violation of restrictive practices.
    But this is interesting. I have it down in my notebook that maybe the colour of the cardigan does not matter? An important scientific finding.
     
    2kidswithME, janice, MEMarge and 8 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It is a curious paper and presumably invited by someone? You do not normally publish a paper and then publish how you came to do the study a second time - unless of course you are testing Einstein's theory of general relativity or something. Some useful historical bits.
     
  19. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Yes, it reads oddly and confused, part rehash of protocol, part narrative, part justification.

    It reeks again of hubris.
     
  20. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    According to the TSC minutes, the thinking was,
    20050629 TSC 29/06/05
     
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