1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Guardian piece on ME by Nick Duerden, mentions PACE 'controversy', includes quote from Chalder. Bit of a nothing article.

Discussion in 'General ME/CFS news' started by Esther12, May 6, 2018.

  1. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK

    Not only the recovery claims but the claims in the manuals (which they seem to have removed from public view) where CBT and GET claim to be curative where as APT and SMC claim to help with symptoms and allow the body time to recover. This difference in expectation setting is one of the things that is likely to introduce reporting biases into the subjective results.

    They can't just tone down their claims because they were fundamental to the structure (and bias in outcomes) of PACE.
     
  2. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    They also published an article from White after the initial reanalysis of the recovery results and ignored complaints that it was inaccurate.
     
  3. Sean

    Sean Moderator Staff Member

    Messages:
    7,213
    Location:
    Australia
    It is better than the Guardian's usual standard on this subject. I'll give it that.
     
  4. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    266
    Have these been uploaded anywhere for viewing?
     
  5. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
     

    Attached Files:

    MEMarge, ladycatlover, inox and 10 others like this.
  6. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    See above. May already be elsewhere.
     
  7. Andy

    Andy Committee Member

    Messages:
    21,962
    Location:
    Hampshire, UK
    :thumbup: I'll put uploading them to MEpedia on my to-do list.
     
    MEMarge, inox, andypants and 7 others like this.
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    1,208
    I've never seen anything by Chalder treating the illness as largely biological or acknowledging any biological underpinnings

    addressing fears and beliefs as CBT for CFS does is psychological treatment.

    She doesn't understand why patients don't like her trials- I'm sure tuller has written to her about selection criteria, lack of objective measures and issues with underlying hypothesis.
     
  9. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

    Messages:
    266
    Gosh that’s a lot to read. Thanks very much, I think I’ll have to tackle this over a series of weeks, haha.
     
  10. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    I've most certainly not read it all by any means, but dipped in as and when. Although this information has been around a long time, I realised from @Andy's post there will be many people here in S4ME who've maybe not seen it. Very enlightening some of it I think, especially noting some of the authors and what they have said since. Much of the information is replicated across the four manuals.
     
  11. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Just a thought @dave30th:

    The PACE papers are of course the authors' statements of what happened during their trial, and their interpretations of the eventual outcomes.

    The PACE manuals on the other hand, are clear statements of the presumptions and intent behind PACE, and in many ways aimed to instill a mindset into both the therapists and in turn the participants, via both the interventions, and the way those interventions were applied. Statements of clear intent before the trial began. It just feels to me there might be some mileage along the way, possibly, to come at things from this angle, especially in the light of some of the statements made be the authors more recently.

    Like I say, just a thought.
     
  12. Trish

    Trish Moderator Staff Member

    Messages:
    52,337
    Location:
    UK
    I think @dave30th included stuff about the PACE manuals in his original PACE analysis, @Barry. I could be wrong, it's a long time since I read it.
     
  13. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Yes, understood. But quite a lot of water under the bridge since then, and I was just thinking the manuals give an unnervingly clear insight into the way the trial was run and participants (and therapists!) were primed, before and during the trial. I was wondering if now, there might be some mileage in running an article that focused on this aspect, homing in on the manuals rather than the papers - the premeditated intents that seem to often be downplayed or denied. I also think that during the last year or two there will be a wider readership, who might pick up more on this if not lost amongst the rest of the PACE material. But I'm by no means certain.
     
    alktipping, MEMarge, EzzieD and 3 others like this.

Share This Page