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Earlier version of PACE treatment manuals, trial identifier, etc.

Discussion in 'Latest ME/CFS Research' started by Esther12, Mar 11, 2012.

  1. Esther12

    Esther12 Senior Member

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    I'm not sure if others have seen these yet. I've still not read the published versions, but I'd assume that these earlier ones would be more forthright. They were gained through a freedom of information request.

    They're combined in a zip file attached here.

    Some comments and quotes sent to me by others:


    Happy reading...

    Attached Files:

  2. Enid

    Enid Senior Member

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    Not sure whether to laugh or cry.:D

    That's some exposure and frightening reading (Middle Ages and all that's missing is Vincent Price).
  3. Astrocyte

    Astrocyte

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    Well I've just about completed therapy at Barts and there was none of this.
    Firestormm likes this.
  4. Esther12

    Esther12 Senior Member

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    It wouldn't surprise me if their description of their own treatments was misleading. Equally though, it wouldn't surprise me if they misrepresented their approach to CFS to their own patients. It seems that they have little interest in truth or honesty, so anything is possible.

    I still think that it's useful to look at the approach to CFS they purport to be taking, and see if there are any problems. These are the views of CFS that are being promoted amongst medical professionals, and they have a profound affect upon the way in which patients are treated.
    being, Dolphin, Enid and 1 other person like this.
  5. Enid

    Enid Senior Member

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    It does seem to tie up with the "ideas" around these parts a few years ago - some sufferers offered CBT or nothing else (depression was suggested initially - psychological/behavioural). And it certainly reflects the attitude of 4 junior Docs when I was stretchered from the street to Accident & Emergency having collapsed as "behavioural" - we've a new idea - it's all in your mind. And produced a psychiatrist.

    It's the influence of things like this on other medical professionals that so frightening in the UK.
  6. Dolphin

    Dolphin Senior Member

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    I read these before the trial was published and hence before the official versions were released (it took a lot of work!). Anyway, I'd be interested in any differences with the final version. (Apologies: I can't remember whether anyone ever did this)

    It is interesting to get a feel for what they believe.

    However, the documents had a lower percentage of dubious claims to the literature handed out by the Liverpool service (see the second link in my signature) which, if I recall correctly was the basis of the Powell published studies.

    But the bits at the start of the PACE Trial therapist manuals, including the tables where they compare and contrast the elements, are interesting to get a good idea of the theoretical model they use.
  7. Firestormm

    Firestormm Guest

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    Morning Astrocyte,

    I for one would like to hear more of your experiences if you are willing to share them? I have had CBT in the past on several occasions although not specifically as prescribed for 'ME' by the protocols laid out in the PACE trial etc.

    Whilst it is useful to read these things and share our interpretations it is I think good to hear from those who have participated in such therapies specifically. So if you're up for it - I'd like to hear some more.

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