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A critical commentary and preliminary re-analysis of the PACE trial

Discussion in 'Latest ME/CFS Research' started by Valentijn, Dec 14, 2016.

  1. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    'The therapist should be able to demonstrate a sound knowledge of CFS/ME as participants will generally be well informed about their illness'

    So that would be sound knowledge of the BPS model then.

    I can't be bothered going through the rest line by line.

    What a pile of dangerous and patronising bullshit.
     
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  2. Chrisb

    Chrisb Senior Member

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    I was surprised to see that the therapist should display a sound knowledge of the aetiology. I thought that one of the early decisions in the rebranding of ME as CFS was to deny the importance of aetiology. Perhaps the trial designers hoped to learn something from the therapists they recruited.
     
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  3. Daisymay

    Daisymay Senior Member

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    In case of interest, here's Professor Hooper's take on the manuals in "Magical Medicine".

    http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf

    Section 4: Quotations from the PACE Trial Manuals……………………………………………….. 316
    Quotations from Therapists’ and Participants’ CBT Manuals………………………………………… 324
    Quotations from Therapists’ and Participants’ GET Manuals………………………………………… 345
    Quotations from Therapists’ and Participants’ APT Manuals………………………………………… 369
    Consideration of SSMC (doctors’) Manual……………………………………………………………… 384

    http://www.margaretwilliams.me
     
  4. chipmunk1

    chipmunk1 Senior Member

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    It is certainly not euthymic psychology.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    Perhaps we can pause there for a moment. I wonder if the therapist would be prepared to engage with the patient, empathise, and acknowledge the patient's difficulty in accepting this explanation in the light of the recent analyses of the PACE trial. By not integrating the findings of Matthees, Kindlon, Tuller et. al. into their collaborative model the therapist may be missing a wonderful opportunity to encourage patient optimism.
     
  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Yes and getting worse is quite a reasonable thing to fear given that there's no antidote if the 'therapy' is a disaster. "Here's a therapy which may likely make you worse, at least at first and then long term it will make no difference (if you're lucky). In the middle we can be wildly optimistic though and ignore that you're not making any notable improvement. Do you want to sign up?"
     
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  7. Tom Kindlon

    Tom Kindlon Senior Member

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    self-inflicted conditions.png
     
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  8. Jenny TipsforME

    Jenny TipsforME Senior Member

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  9. A.B.

    A.B. Senior Member

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    Maybe they had experience in dealing with discrimination, and AIDS was the last straw and a worthy cause to fight for.
     
  10. Cheshire

    Cheshire Senior Member

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  11. Tom Kindlon

    Tom Kindlon Senior Member

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    Also the figures from the US don't show the full extent of the suffering worldwide from HIV/AIDS which is much more prevalent in some other countries.
     
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  12. Barry53

    Barry53 Senior Member

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    I think that would be a strong motivation. Plus just a bit harder for the pseudo-psychiatrists to lay claim to as "theirs".
     
    Last edited: Jan 11, 2017
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  13. Snow Leopard

    Snow Leopard Hibernating

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    HIV/AIDS is still relatively overfunded when considering worldwide and future projected burden.

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0016837

    Arguably some of that money could have been better spent on prevention in developing countries, but I digress...
     
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  14. user9876

    user9876 Senior Member

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    I assume this graph is somewhat dynamic in that the disease burden is partly a function of available treatments (which would reduce the burden) and this is a function of research spending (or research success).

    I'm not completely bought into the idea that research funding should be just determined by the disease burden. I'm thinking it should also be related to things like the maturity of the science. In a well explored area there may be little point in doing much research unless there is a break through in the fundamental underlying science that can lead to new approaches.

    So I would argue that as well as the overall disease burden meaning ME research should have more funding it is also because big gains could be gained. I.e. the current research is very immature and as such putting money into this area is likely to have a good chance of a significant effect in reducing the disease burden for ME.
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    None of the areas are really "mature".

    But you do make an important point, specifically the need to build research capacity in neglected areas.
     
  16. Barry53

    Barry53 Senior Member

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    I do not have a strong background in statistics, so am unable to follow all the reanalysis. So I decided to run my own much simplified analysis on the source data spreadsheet. What is confusing me is I am getting lower participant recovery numbers for original endpoint than the reanalysis did. e.g. 6 for CBT rather than 11, 5 for GET rather than 7, 1 for APT rather than 3, and 2 for SMC rather than 5. I do not think (but I am by no means sure) this is simply due to my non-statistical approach, but would like to know one way or the other.

    I have only counted participants who fulfilled all four criteria. Because the original protocol endpoint ME/CFS criterion is not available, I used the simple Oxford criterion that is available, meaning my numbers would still give recovery rates on the optimistic side.

    If anyone can help clarify why I am seeing different numbers I would appreciate it. Happy to make my spreadsheet available if need be.

    I have some basic understanding of statistics, and would be grateful to better understand the stats techniques used in the reanalysis. Any pointers would be much appreciated.
     
  17. Barry53

    Barry53 Senior Member

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    Bug in my spreadsheet. Thanks @Tom Kindlon, who pointed out I was using the wrong 52 week CGI score.
     
  18. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    http://www.meassociation.org.uk/2017/02/29928/
     
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  19. Barry53

    Barry53 Senior Member

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    Excellent!
    Minor point: Was it 2017, or late 2016?
     
  20. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Should be 2016.
     
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