Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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PACE Trial and PACE Trial Protocol

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

  1. wdb

    wdb Senior Member

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    It really helps if you already know the conclusion that you can start there and work your way back and figure out what assumptions are important.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    Got to page 15 and gave up. Basically it's a tutorial on a sophisticated statistical method for working out whether particular parts of a treatment process over time contribute most to the results. I think (I may well be wrong) they are saying that the CBT/GET arms had the most improvement in the first 12 weeks, and put this down to changing false illness beliefs (ha ha).

    I can see that such analyses might be useful in assessing a treatment protocol where objective linear data is collected and that involved a series of steps over time, to help work out which steps were the most effective, but surely that can be seen simply visually by drawing a graph of outcomes against time, and marking which time periods involved which treatment. But then I'm just a simple ex-maths teacher...

    Basically it's same old same old. Garbage in, garbage out.

    I'd love to see the psychs on the team trying to explain sentences like this from page 36:

    (warning, concentrated jargon soup coming up. May cause foggy brains to implode):

    'The models partition the true score and residual from one another using a decomposition of covariances (Kline, 2011). These models then usually postulate a first-order autoregressive structure among the true scores where a variable is a function of that variable at the previous time point, resulting in the correlation between measurements decreasing the further apart they are in time. For longitudinal mediation, the simplex structure is fitted to each of the mediator measures and outcome measures and then the processes are joined through b paths between the latent variables (Figures 1 and 2).'

    Though I did like this bit near the end:

    'We note in the case where there is no effect of the treatment on the outcome, terms like total effect, indirect effect, partial mediation and so on, become rather obsolete'

    Ha ha, obsolete indeed.
     
    Last edited: May 17, 2017
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  3. lilpink

    lilpink Senior Member

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    Last edited: May 17, 2017
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  4. RogerBlack

    RogerBlack Senior Member

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    Doesn't b) miss out that those variables need to be linear, not just the relationships between them - I.E. not SF36.
     
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  5. Esther12

    Esther12 Senior Member

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    Still worked for me. Thanks for the comments from people... sounds like this stats heavy paper may not be for me. I had struggled through the other ones, but I'm not sure how much I got from them. From what others have already pulled out, maybe this paper could be handy for providing quotes to compare what PACE should have done with what they actually did though.
     
  6. lilpink

    lilpink Senior Member

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  7. lilpink

    lilpink Senior Member

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    Can you tell me which link you are using please?
     
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  8. trishrhymes

    trishrhymes Senior Member

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    You're right, it's basically a stats paper. Don't waste your time on it.
     
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  9. Esther12

    Esther12 Senior Member

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  10. lilpink

    lilpink Senior Member

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  11. Barry53

    Barry53 Senior Member

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    Sorry - another phrase comes to mind: "Bullshit baffles brains".
     
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  12. Barry53

    Barry53 Senior Member

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    Depends exactly what variables they mean. Linearity/non-linearity only makes any sense if talking about one thing relative to another. But either way I agree with you - subjectivity is highly likely to exhibit non-linearity, and would at least be very hard to prove it was linear. Maybe the subject of another study?
     
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  13. user9876

    user9876 Senior Member

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    They add up the question answers and give a score. Then they give a mean of scores in trials or a mean difference. But if you have one set of answers then a change to add in an additional answer may be small but is counted as the same improvement as when the change is big. So for example the difference between being able or struggling to walk a block (in the US version) is the same as being able to or struggling to walk a mile.
     
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  14. Esther12

    Esther12 Senior Member

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    Not sure how noteworth this is, but my google searching just turned up this response from QMUL to an FOI:

    https://www.whatdotheyknow.com/request/cfs_misleading_and_poor_quality#incoming-972957

    https://www.whatdotheyknow.com/requ...CE sponsorship and indemnity letters.pdf.html

    I've been thinking that I would like to make an official complaint to QMUL about hte problems with PACE, but I've always been a bit unsure how to do this. Maybe some of the info there will help? tbh, my mind has gone for the day, so will leave this for now.
     
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  15. user9876

    user9876 Senior Member

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    I think they are avoiding the issue of who approved what and when and what information they were presented with. I have a theory that the changes were not explicitly approved but they got the stats plan approved which slipped in the changes without mentioning them. To me their refusal to release records saying the changes were approved only adds to my belief.

    One thing that I find strange is that they push blame onto others who seem happy to quietly take it. I wonder if at some point someone on the ethics committee will realize their professional judgement is being questioned and say not of course we didn't approve recovery outcomes that were below the trial entry criteria. But I can't see that happening until they feel people are questioning their judgement due to the decisions that they are being blamed for.
     
  16. Dolphin

    Dolphin Senior Member

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    Perhaps that is true for some changes but the recovery criteria and the normal ranges are not discussed in the statistical analysis plan:
    https://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-386
     
  17. slysaint

    slysaint Senior Member

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  18. slysaint

    slysaint Senior Member

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    Good website:
    ANGLIA ME ACTION (AMEA) is a UK-based medico-political campaign. The AMEA website is designed to encourage and assist medical professionals, politicians, journalists and public to press for genuine evidence-based research, care and treatment, based upon genuine science-based patient selection criteria, for the WHO-ICD-10-recognised biomedical multi-system illness known as Myalgic Encephalomyelitis/ME.

    http://www.angliameaction.org.uk/
     
  19. RogerBlack

    RogerBlack Senior Member

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    A larger set consisting of people who have commented positively in a professional capacity on PACE might also be useful.
    Everyone from SMC staff to uncritical journalists, to ...
     
  20. Dolphin

    Dolphin Senior Member

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