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Video: The PACE trial: a short explanation, Graham McPhee

Discussion in 'ME/CFS research news' started by Indigophoton, Jun 19, 2018.

  1. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Love this video and its simplicity in explaining some of the ridiculous things wrong with PACE. Have just Tweeted it; I'm not much of a presence on Twitter and have only a few followers but hopefully they will pass it along too.
     
    Inara, ScottTriGuy, MEMarge and 10 others like this.
  2. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Graham you could do a parody of Blofeld stroking his cat, sitting there in your gentle manner stroking George as you masterfully expose PACE!
     
    Inara, Amw66, TiredSam and 14 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Reminds me of a simplified version of the ESA capability to work questionnaire heavily criticised for being unfit for purpose; I imagine the DWP thought it perfectly adequate.
     
    Inara, Daisymay, alktipping and 3 others like this.
  4. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    Wow, another fine video from Graham :emoji_feet: and another fine photo of George! :inlove: The day couldn't get any better. :emoji_confetti_ball:
     
  5. TiredSam

    TiredSam Committee Member

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    That video is absolutely brilliant. Not only does it strip away all the jargon so I can finally understand exactly why PACE was such a pile of crap, but watching it has increased my score from 35 to 40. I now plan to watch it another 12 times - my 'recovery' will be complete!

    Will you count it is as a success if people say they feel encouraged to take a more active part? No need to collect data on whether they actually do take a more active part, you will have made your point and can head of to the newspapers to trumpet your findings.

    Of course you can, there was nothing wrong with the patient's health in the first place so there's no improvement to measure. Trying to measure it would just validate that there was something wrong in the first place, which is the belief we're trying to change. Why undermine our success? Changing the belief is all we ever wanted to do, it was the only thing that needed doing, and we did it!

    Unevidenced claims about the efficacy of Graded Travel Therapy? Do be careful @Graham ...
     
    Maggie, alktipping, TakMak and 15 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The OHC say something similar in their own research:

    "The study found significant improvements in participants belief they could change their situation and the symptom of sleep after only 8 weeks."

    http://www.theoptimumhealthclinic.com/research-overview/publications/

    so how do you measure belief?
     
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    alktipping, ahimsa, Inara and 3 others like this.
  8. Graham

    Graham Senior Member (Voting Rights)

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    Ooooh! Nice one, @TiredSam ! The only question is how many sessions will it take?
     
    alktipping, ukxmrv, Inara and 5 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    just the basic validation with employer family and friends of having appointments at the hospital about ME made me feel a bit better about the situation
     
    Maggie, alktipping, Inara and 5 others like this.
  10. TiredSam

    TiredSam Committee Member

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    With a questionnaire!
     
    alktipping, ukxmrv, Inara and 10 others like this.
  11. Andy

    Andy Committee Member

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  12. Andy

    Andy Committee Member

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    @Graham , there is repeated dialogue in your voiceover starting at 5:34 - either that or it's a glitch in the matrix.
     
    alktipping, Amw66 and Graham like this.
  13. Trish

    Trish Moderator Staff Member

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    @Graham, your scale and numbers showing the cut offs at 65, and the 85 moving down to 60 is ambiguous - I think the latter seems to point at 55. Probably doesn't matter, the point is made clearly anyway.

    Excellent video again, thank you. And I like your dig at the end.
     
    alktipping, TakMak, Lisa108 and 3 others like this.
  14. Cheshire

    Cheshire Moderator Staff Member

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    Thanks @Graham
    As usual, very clear.
    "Yet we are told that this study is of top quality. Let's be honest, this is not a matter of opinion or a question of interpretation. It is wrong. Black and white. Clearly, scientific analysis and statistical techniques are skills that the supporters of CBT have yet to acquire."
    wow!
     
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  15. Graham

    Graham Senior Member (Voting Rights)

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    Thanks @Andy : I've just been loading and checking the subtitles and came across it. There's a word I said to myself. I'm trying to find out if I can edit it in Youtube, whether I have to upload it all again, or whether simply to issue an apology underneath! I didn't think many people would be that quick off the mark.

    Thank @Trish . It's a tricky one that I puzzled over. The scale only permits you to score multiples of 5, so strictly speaking the borders are correct and the green and blue rectangles cover the correct area. I decided in the end that people would listen to it and not bother too much about things like that - it is for those who find the usual analyses too heavy going.
     
    alktipping, Inara, EzzieD and 6 others like this.
  16. Trish

    Trish Moderator Staff Member

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    You're right, ignore my nit picking!
     
  17. Graham

    Graham Senior Member (Voting Rights)

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    You're a maths teacher - nit picking has been surgically implanted in your very essence.
     
  18. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Sorry to be nit-picky too, but there is an issue with the whole recovery cut-off thing that keeps being ignored. It seems to have become a bit of a meme this thing that you could enter the trial with a score of 65 and yet be recovered with a score of 60. It's just not true. The recovery criteria also required an improvement of 20 points to qualify as recovered (in addition to a 8 pt decrease on CFQ and no longer meeting Oxford criteria). I know it's a small thing, but the PACE authors will always have an advantage if that "flaw" keeps being used.

    [Edit: Sorry for getting the details wrong - I'm seriously losing it!]
     
    Last edited: Jun 27, 2018
  19. Graham

    Graham Senior Member (Voting Rights)

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    Well, I did say it was the recovery target for that questionnaire.

    In the third video I intend to cover the "four" criteria - three are questionnaires and one is a diagnosis from a doctor that can be over-ruled by a questionnaire.

    They didn't require an improvement of 20 points in fact, nor did they demand an 8 point decrease in the CFQ. That was back in the early days before they changed everything.

    They ended up with targets of a score of 60 or over for the sf-36 physical function, a score of 18 or less on the Likert version of the CFQ (which again can overlap with entry criteria, and which was obtained from a similar calculation of the average and standard deviation), a tick in the box that the patient feels much better or very much better, and a diagnosis from the specialist that the patient no longer suffers from CFS.

    However, that diagnosis is overruled if the patient score 70 or more on the sf-36, OR scores less than 6 on the bimodal CFQ. In other words, if they no longer meet the entry criteria, the doctor's assessment is overruled. That would imply that all the patients who had a diagnosis of CFQ but were not eligible for the trial because their symptoms were not severe enough, would no longer be classified as having CFQ – a 100% success rate for the fifth group of patients with CFQ not mentioned in the trial of those who couldn't take part.
     
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  20. Adrian

    Adrian Administrator Staff Member

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    I can't see a requirement for a 20 point improvement in the recovery criteria.
    There is a requirement to meet the Oxford criteria but even this has been modified so for some patients the are deemed not to meet the oxford criteria if they don't meet any of the trial entry criteria. So if either of the CFQ or Sf36 raises above the entry level they are considered not to have met the criteria. Also the term for the criteria is shortened and it could be a patient who says pain is now the major symptom not fatigue would be classed as not meeting the Oxford criteria.
     
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