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The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. oceanblue

    oceanblue Senior Member

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    I completely agree. Of course, it entirely depends on what the results say (this could yet be another FINE damp squib) but there's sure to be a media blitz from the authors so if there are serious flaws in the study we need to be rigorous and fast with a response too.

    At the same time, if there are any loose shots from us making inaccurate or weak points, the authors will quick to jump on them to brand patients as not understanding the research properly. It's gonna be fun...
  2. Min

    Min Senior Member

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    AfME's statement:



  3. Angela Kennedy

    Angela Kennedy *****

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    thanks for that Min.
  4. Angela Kennedy

    Angela Kennedy *****

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    Yes- good points. I can think of more fun things to do though... : )
  5. oceanblue

    oceanblue Senior Member

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    Yes, Matron...
  6. Angela Kennedy

    Angela Kennedy *****

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    Indeed - or whatever Matrons say ; )
  7. Dolphin

    Dolphin Senior Member

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    Letters: only have 2 weeks and 250 words

    From Co-Cure:
  8. Snow Leopard

    Snow Leopard Senior Member

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    Thanks Dolphin. Can you post that info on the thread on the 'other' forum, to encourage more letters to be written?

    Any 'themes' and specifc research you think we should stress in writing such letters?

    Such responses depends on the paper of course. I'm going to be pissed if CBT/GET is deemed to be as effective or more effective than pacing..
  9. Esther12

    Esther12 Senior Member

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    The Pacing component looked poor to me. I expect it to do less well than treatment as usual. (Please note - this is a fairly ignorant view based upon only a brief look at the pacing guidelines - but they looked bad).

    It's really going to be all about the details for me. Did they manage to effectively sub-divide those with chronic fatigue in ways which allow for meaningful predictions to be made about the different likely responses to treatment for individuals. I wouldn't be at all surprised if some of those with fatigue problems do benefit dramatically from CBT or GET... so the aggregated figures are of less interest to me, even though I expect that they will capture any headlines that appear.
  10. Esther12

    Esther12 Senior Member

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    ps: I wonder if the media are getting to report the press release or look at the full paper? (LOL)
  11. Snow Leopard

    Snow Leopard Senior Member

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    Even if they were given the full paper, how many would read and understand it?
  12. Dolphin

    Dolphin Senior Member

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    Done

    I have some ideas. But variety can be good so maybe I won't say them yet. But I am willing to help people off-list* (or on-list* if people prefer) if they make a start on a letter but are looking for a reference (say).

    *to an extent anyway
  13. Dolphin

    Dolphin Senior Member

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  14. Bob

    Bob

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    Does anyone think that we should start a new thread with a title something like "PACE trial results imminent"?
    It might be useful for people to know.
    Or should we wait until the actual results?

    BTW Have there been any more hints about when they are going to be released to the public?
  15. Dolphin

    Dolphin Senior Member

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    Results are out at midnight.
    At that stage, perhaps there could be a separate thread. Or you could post something in the news and advocacy section and link to here if you wanted.
  16. oceanblue

    oceanblue Senior Member

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    Shame, I'll be fast asleep by then. Look forward to your incisive analysis in the morning.
  17. Esther12

    Esther12 Senior Member

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    I'm unsure... should I stay up late and probably get intensely irritated by the way this is covered, or turn the PC off now and have a good nights sleep?

    There's always a chance that it will be a useful bit of research...
  18. Esther12

    Esther12 Senior Member

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  19. Dolphin

    Dolphin Senior Member

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    This paper will show that pacing isn't the way to go so no point doing that. ;)

    But seriously, I imagine the paper will get people's minds racing. Up to people themselves. I have an odd set sleep pattern.
  20. oceanblue

    oceanblue Senior Member

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    Early report of PACE in the LA Times:

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