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Accessible analysis of PACE?

Discussion in 'General ME/CFS News' started by Graham, Oct 1, 2012.

  1. Graham

    Graham Senior Moment

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    Earlier this year, a group of us produced an analysis of the PACE trial, which many of you may have looked at. We used graphics and analogies to make it easier to follow.

    http://evaluatingpace.phoenixrising.me/homepageanim.html

    There are now two short Youtube videos which explain some of our findings, with two more in the pipeline. The idea is that these are even easier to understand, and hopefully will widen our audience, and can be shown to anyone who wonders why we are sceptical of the assertion that CBT and GET "cure" 30% of people with ME.

    Don't be too picky, please. It is a complex minefield, so everything has been whittled down to the bare essentials. Hope you approve.



    Roy S, Battery Muncher, CJB and 8 others like this.
  2. Esther12

    Esther12 Senior Member

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    You're doing this wrong Graham - all of that analysis of the evidence, and how the results were spun....

    You'd get far more attention if you just claimed that patients were refusing to accept that PACE showed 30% of patients were cured by CBT/GET because they were crazy militants who hate psychiatry. If you try to work out what's true, and show why patients are reasonably angry about the way false claims of efficacy are made to them, that's not going to be popular with any important people. You're not going to be able to make any money out of this.
    Bob likes this.
  3. Graham

    Graham Senior Moment

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    Thanks Esther. I'm intending on the fourth video to return to my rocking chair with George and admit that many people will think that I am a reckless and violent terrorist. Anyway, I'm not after money, just world domination. Modest enough aims I would have thought.
    PennyIA, Roy S, Shell and 2 others like this.
  4. Bob

    Bob

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    Great stuff Graham!


    If anyone wants to view a larger version of the videos, then you can use these links which take you to the videos on the YouTube website:

    1st video

    2nd video

    .
  5. Don Quichotte

    Don Quichotte Don Quichotte

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    Very well done.
  6. Don Quichotte

    Don Quichotte Don Quichotte

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    one of the problems with studies that look at subjective/psychological variables is that there is no clearly defined normal. Therefore there is a lot of place for statisticobable, which can easily confuse someone who tries to quickly read the article during a busy day.

    I tried to "translate" their study to a study in my field of practice.


    I can promise you that any reviewer would throw this paper to the bin, without reading any further. Because a Hgb. of 10.0 would not be accepted as normal by any standard.

    Very few physicians (who would be the reviewers of this paper) know what a normal chalder or SF-36 score is. By the time they reach the results section they have forgotten what was defined as normal in the methods section. They have gone through a very long and detailed description of the statistical methods being used, giving them the impression that so much details and terminology prove a very meticulous approach.
    I am not sure that even the authors of the paper were aware that their lower limit of normal is below the lower limit of ill. I believe they too got lost in their forest of words and supposedly accurate terminology.
  7. Bob

    Bob

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    Valentijn likes this.
  8. Don Quichotte

    Don Quichotte Don Quichotte

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    Also, the SD (24) is higher than the expected change (10).
    This makes it a very poor parameter to assess.
  9. Graham

    Graham Senior Moment

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    Thanks all. Sonia and Jane! World domination is getting closer.;)

    Don, I'm not sure about what the authors thought. I was thinking of adding a comment about this in the fourth video (the first three are to be factual, the last to be a sort of summing up). I'd be interested in people's thoughts on this.

    If all the changes and faults in design had been accidental, then I would have thought that some of them would have worked against the effect. But all of them work the same way, either boosting weak effects, or creating positive effects out of nothing. So I think that one or two of the authors, convinced that their therapies were effective, and convinced that the majority of patients would show improvement (after all, they have been saying this for years), decided that their methods or targets needed tweaking to show the truth as they saw it. They failed to see that in reality the trial was proving them wrong. Sadly, we are in an area where medical status counts much more than scientific scepticism, and the other authors, the editors, and the peer-reviewers, did not bother to do a proper analytic job because it was clear that this was a high-status, highly respected study that had used sophisticated statistical techniques (or in my terms, pressed clever buttons on their spreadsheets). Then NICE simply assumed that the peer-reviewers had done their job properly. I would say that it was a case of the emperor's new clothes, but in that case people thought that what they saw was wrong. I don't think anyone much in the medical world has actually looked at it, and has simply let high status take over. Only those of us not dazzled by high medical status have dug around for the reality.
  10. Graham

    Graham Senior Moment

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    The other two in the set of four are now ready. Hope you like them.

    1: The Pace Race

    2: 60 – the new 75

    3: Not So Bad

    4: The force of LOGic
    alex3619, Battery Muncher and Bob like this.
  11. Bob

    Bob

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  12. Graham

    Graham Senior Moment

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    How do you do that Bob?
  13. Bob

    Bob

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    :)

    On this forum, just delete the prefix (http://)
  14. Graham

    Graham Senior Moment

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    Such wisdom in one so young!
  15. Battery Muncher

    Battery Muncher Senior Member

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    This is a brilliant piece of work, Graham (et al.)! I'm not finished yet - I can only manage it in very very short bursts... but have found it immensely helpful. Surprised it didn't ignite more discussion when first posted!
  16. Graham

    Graham Senior Moment

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    Thanks Battery Muncher. We are now working on video 6. You aren't a singer are you? I want to start it with a song, with a different person singing each line, and I am a couple of singers short. I could let some sing two lines, but it would be nice not to have to. The song is a Beverley Hillbillies type, and purely for fun.
  17. Battery Muncher

    Battery Muncher Senior Member

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    No problem, Graham. Unfortunately, I can't help where singing is involved - hopefully someone else can!
  18. Daisymay

    Daisymay Senior Member

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    Hi Graham et al, just wanted to congratulate you on these excellent videos which show so clearly the problems with PACE, thanks, I'm sure it took a lot of effort and energy.
  19. Graham

    Graham Senior Moment

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    Thanks Daisy, but the real bonus is they keep me off the streets and stop me from annoying the family (much). They are a group effort though.
    Valentijn likes this.
  20. Sea

    Sea Senior Member

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    @Graham if you're still looking I don't mind singing for you. It's the not knowing how to do computer stuff that's held me back from offering before. I'd need help with that.

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