1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

PACE Trial media coverage UK

Discussion in 'Latest ME/CFS Research' started by Peter Kemp, Nov 7, 2012.

  1. Peter Kemp

    Peter Kemp

    Messages:
    27
    Likes:
    125
    meandthecat, Bob, wdb and 1 other person like this.
  2. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I've only read the last one so far, but it was excellent. Thank you for posting these.
     
    Peter Kemp likes this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,302
    Likes:
    5,624
    Thanks Peter. I only had time to look at the first one, but that looks like a really handy resource. Ta for your work collating it all.
     
  4. Bob

    Bob

    Messages:
    8,591
    Likes:
    11,514
    South of England
    A handy resource, and interesting analysis. Thanks Peter.
     
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,302
    Likes:
    5,624
    Hi Peter.

    I've just looked through the second one, and had some comments. I thought it was sometimes written in an overly inflammatory manner, but didn't know who your audience is.

    I think that people could argue this is unfair. It's really f-ing hard to summarise Wessely's approach to ME/CFS. Personally, I think it's best not to try, but if you were to I think it's fairer to say that he claims that ME and CFS should be treated as psychological illnesses rather than that they are psychological illnesses.

    re

    "'...must have had complete control over the information given to the Press"

    That sounds too strong, as they were not stopping others from commenting, just providing them with no place to do so, and no advance access to the paper. Something like "...chose to present information in a way which led to an exaggerated view of the efficacy of their treatments, while the SMC provided no commentary from those critical of their work" would prevent any confusion.

    I think that there are aspects of that which are too strong (eg inappropriate interpretation of normal sensations is a common theme of psychosocial work, but hard to summarise), and that the point about the problem with merely measuring questionnaire taking behaviour could be strengthened by mentioning here that they dropped the use of actometers as an outcome measure after actometers had been purchased, and that 3 other trails have shown CBT leads to improvements in questionnaire results without leading to an increase in the amount of activity patients can carry out.


    I didn't know about the practice walk part. Do you have any extra details for that? Ta.
    CE Trial participants
    Personally, I think that's pretty close to the truth. It's rather speculative though, and the language is not going to convince anyone who currently think CFS is well treated by people like White. It's another really complicated thing that it could be best to be cautious around.
    Those were my thoughts. Ta.
     
    Dolphin likes this.
  6. Dolphin

    Dolphin Senior Member

    Messages:
    6,840
    Likes:
    5,960
    Well done, Peter Kemp, for these documents.


    I'm just going to nit-pick, but I generally would only tend to do this if a (non-published) piece is mostly good, rather than things which I think are irredeemable.

    On Document 3:
    Point #1:
    Although the initial intention was for the FINE Trial to be for the severely affected, I'm pretty sure I read that that was dropped at some stage.
    And indeed when one looks at the entry criteria:
    http://www.biomedcentral.com/1741-7015/4/9 :
    neither requirement ensures the people are severely affected. (The full criteria are longer but they are the basics).

    [Indeed, people satisfying the PACE Trial criteria for normal fatigue and functioning could enter the trial].

    However, looking at the baseline data, the group does seem to be more severely affected than the PACE Trial cohort at baseline: Mean (SD) SF-36 PF (pragmatic rehabilitation group) (0-100): 30 (18.6). CFQ (0-33): 29.39 (3.46)
    (average for baseline in PACE Trial: around 38 and 28 respectively).

    PACE Trial participants had to be able to attend outpatient appointments which would have excluded some of the FINE Trial participants.

    -------
    Point #2:

    That is what the authors put in the paper. However, it is incorrect and they corrected it in their letter in reply to the letters:

     
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,840
    Likes:
    5,960
    Some points I liked in this, for what it's worth:

    - Use of SF-36 PF and CFQ questionnaires, to see the small changes achieved for the GET+SMC and CBT+SMC over the SMC alone groups (same figures would work for "improvement"). Also, used to highlight what could qualify as "normal" functioning and fatigue.

    - The graphs showing the dramatic improvements seen in CFQ scores following CBT for MS trial and how final levels in PACE for GET and CBT were similar to baseline scores for MS in that:

    This part from the section, "Human Costs and Monetary Costs":

     

See more popular forum discussions.

Share This Page