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PACE: Reports from trial participants (GET, CBT)

Discussion in 'PsychoSocial ME/CFS Research' started by Hutan, Jun 25, 2018.

  1. Hutan

    Hutan Moderator Staff Member

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    This thread has been started as a place where reports from PACE trial participants can be recorded.
     
  2. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Thanks. This one from Lois Addy: http://copingbadly.blogspot.com/2018/03/reanalysis-of-pace-data.html


    And another - left as a comment on Keith Laws blog:

    This is concerning because the trial was well over by then - so what on earth were they doing still recruiting patients?

    Link to the post with pdf of 19 public statements.

    [Update: This is the link to the thread this previously came from]

    [Another Update: Post from the other thread added below]


     
    Last edited: Jun 28, 2018
  3. alex3619

    alex3619 Senior Member (Voting Rights)

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    During the PACE trial itself a participant contacted me who was very concerned. Its been a long time so I do not recall details, and would not mention their username even if I recalled it, at least not without permission. They found their comments and complaints were not being recorded, the therapist was writing things like the patient is fine when what they were actually saying is they were having major problems.
     
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  4. Andy

    Andy Committee Member & Outreach

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    To what end are we collecting these? Just for reference?
     
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  5. Hutan

    Hutan Moderator Staff Member

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    The thread was made to be a place to copy the participant reports posted in the twitter thread, so that they were more accessible and could be added to over time. So yes, just for reference and for a better understanding of what went on in the trial.

    I could have copied posts, but we felt in this case that it was better that people decide what they want to be in the thread.
     
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  6. Lucibee

    Lucibee Senior Member (Voting Rights)

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    MS and PW have consistently said over the years that "no-one was harmed in the PACE trial", and that any harms resulting from GET (or CBT) outside the trial are because it isn't being done according to the trial protocol. It's clear that the authors have no intention of following up the participants. Survey data on harms seems to be disregarded. What else do we do?
     
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  7. Andy

    Andy Committee Member & Outreach

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    Thanks for clarifying. As I've been asked to share this on the forum's Facebook page I just wanted to get confirmation in case anybody should ask the question on Facebook.
     
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  8. Andy

    Andy Committee Member & Outreach

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    Shared.
    Code:
    https://www.facebook.com/sci4me/posts/599272020459211
     
    Last edited: Jun 26, 2018
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    There is a danger that getting into a 'anecdote vs anecdote' debate ends up distracting from important problems with PACE, but at the same time, there is value in seeing what trial participants have to say about PACE.

    I'm sure this doesn't need pointing out, but as with anything on the internet it's worth being a bit cautious about who said what. While it's possible for people to just make things up, there's also the problems of people misunderstanding, forgetting, etc. I spoke to one pwME who thought they'd been one of the people in the PACE trial, but actually it sounded like they were just attending a CFS clinic that had been a part of the PACE trial, and were getting treatment based on PACE manuals. For random patients unused to how trials work it's easy to get things mixed up.
     
    Last edited: Jun 26, 2018
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  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    That was my concern about soliciting stories, rather than finding historical accounts elsewhere online.

    The only way of doing this properly is to interview all trial participants - which should have happened by way of 5 or 10-year follow-up - particularly once concerns had been raised.
     
  11. Lucibee

    Lucibee Senior Member (Voting Rights)

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    [Note: I've just edited my first post to show the link where this thread originated from]
     
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    I could be going completely barmy today, so apologies in advance, but is there not a study/ initiative tracing PACE trial participants currently ? I have a faint memory of something mentioned last year.
     
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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Yes, but PW has retired, so no idea who is now doing it (if it is still being done). Also, why just a feasibility study? And 10 years for some participants passed 4 years ago... We're still waiting for the 5-year follow-up study to be published!
     
  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    I remember a cryptic comment from last year re the FOI requests to the effect that Peter White was handling the same dataset for this study and therefore available to extract info. It may have been prior to his retirement - but if he is not doing it - who is?
     
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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  17. alex3619

    alex3619 Senior Member (Voting Rights)

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    Yes, and this needs to be done by someone independent of the PACE trial, with appropriate training. I cannot see this being allowed, at least not currently.
     
  18. Lucibee

    Lucibee Senior Member (Voting Rights)

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  19. Inara

    Inara Senior Member (Voting Rights)

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    It could be possible that I can use these testimonials in court. I'm collecting lots of stuff, you never know if it can be useful.
     
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  20. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    Yes, I wondered if that is what is going on in the post quoted above:
    since there was never a CBT + APT arm of PACE. Unless she took up the offer to have CBT after the APT arm was finished or vice-versa.
     
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