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(UK) Bristol talk on April 2 by Peter White: "Lessons from the PACE trial"

Discussion in 'Upcoming ME/CFS Events' started by Tom Kindlon, Mar 31, 2014.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    It would be good if one or more patient advocates could make it to this. I suspect some/many of us would disagree with at least some things he will say.


    Last edited: Mar 31, 2014
    ukxmrv, Valentijn, biophile and 3 others like this.
  2. Bob

    Bob

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    Here's the transcript:
    "blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah" etc.

    ;)
    greebo, maryb, Valentijn and 8 others like this.
  3. Bob

    Bob

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    If anyone goes, be sure to take your untruth-o-metre with you, to objectively measure the level of untruths in the room. And take your slur-o-metre to make a record of the level of slurs against an entire patient population. And take your scientific ignorant-o-metre to measure the level of scientific ignorance. And take your alteria-motive-o-metre to check for motives and agendas other than the honest pursuit and promotion of science.
    maryb, Valentijn, peggy-sue and 4 others like this.
  4. Min

    Min Senior Member

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    There is no specialist medical care for myalgic encephalomyelitis in the UK, only dangerous nonsense.
    maryb, Valentijn, peggy-sue and 3 others like this.
  5. lnester7

    lnester7 Seven

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    Go and play minute 38 something like that of the kamarof presentation where he says 30 years ago was reasonable to questions the physicality of CFS/ME not today (paraphrasing).

    All I thought when I heard the way he said it is that we should play in every situation like this.

  6. Esther12

    Esther12 Senior Member

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    Would be good to have a record of what was said.
    Bob likes this.
  7. ithought

    ithought

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    Would be good if someone could go with some 'alternative view points to the research' printed out to hand out to people who attend.
  8. lnester7

    lnester7 Seven

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    You know how politics play the game, we need to show up to this events and flow them with questions and references and you will see how the nonsense stops:

    1) How do you explain the findings by prestigious university Stanford on Citokines abnormalities and explain the basic and ask them..... Or how do you explain the EEGs brain inflammation finding of such and such..... Give links to people.
    Valentijn, peggy-sue and biophile like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member

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    An easy one for him: what percentage of patients in the various arms of the PACE Trial were recovered using the original definition in the protocol (my bet is less than 10%, not the 21%/22% that was reported with their new (post hoc), very broad definition).
    Last edited: Mar 31, 2014
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  10. Bob

    Bob

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    Another easy one: What proportion of participants improved in each of the trial arms, over and above the SMC control group? Answer = 11 to 15%

    Another one: On average, how much did participants improve in objectively measured disability after receiving CBT? Answer = there was no improvement.
    maryb, Valentijn, peggy-sue and 5 others like this.
  11. Tom Kindlon

    Tom Kindlon Senior Member

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    I'm sure all leave will need to be cancelled by security and police forces in the area, due to all those high risk ME activists. :rolleyes:
  12. biophile

    biophile Places I'd rather be.

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    CBT and GET helped a minority of patients achieve small clinical improvements in fatigue and physical function, and the NNT was about 7 for one participant to report a small clinical improvement in these self-reported measures. However, PACE also told participants that "a six-minute walking test will tell us how physically able you are", but this did not yield clinically significant results in any therapy group. Employment hours did not improve, and dependence on welfare or insurance payments increased during the trial. Total service use or costs did not differ between groups.

    PACE also admitted to not using the CDC criteria for CFS properly, and one of the authors of the London ME criteria has repeatedly spoken out harshly against the version used in the trial, so that could be just as improperly applied. Not to mention David Tuller's point about these being subgroups which first had to meet Oxford CFS criteria, they were not independent groups. 80% of candidates who were provisionally or definitely diagnosed with CFS before the trial were excluded from participation. The medical assessment may have also excluded some patients with ME, since some symptoms and signs or blood tests tolerated in ME definitions were regarded as red flags for alternative diagnoses.

    The lead author of the cost effectiveness paper has recently admitted on the PLoS website that CBT and GET are probably no longer cost-effective at 2 of the centres in the trial which delivered CBT or GET. The cost-effectiveness was based on assumptions about the value of QALYs, remember that total service use or costs did not differ between groups and CBT/GET did not lead to participants becoming more productive members of society.

    The lessons that White et al learnt from this trial are that they can get away with questionable protocol changes as long as they are on the right side of the politics and spun in the right way with platitudes about high quality science and dismissing critics as ideological extremists. They got away with abandoning all published protocol-defined improvements and recovery in fatigue and physical function and replaced them with questionable post-hoc thresholds. They got away with claiming that 60 points in physical function is normal and recovered, despite commonly being regarded as major impairment even in their own trial. They got away with claiming that their definition of "recovery" was "conservative" and "comprehensive" despite being achievable without any significant improvement to fatigue or physical function in participants who were previously classified as having severe disabling fatigue. They got away with publishing several factual errors which just happen to be in their favour. They learnt that multiple major deviations from the trial protocol will lead to requests for information on protocol-defined outcomes etc but that these can be dismissed as vexatious and part of an anti-psychiatry campaign to discredit the authors. Their behaviour was rewarded with accolades and uncritical or even gullible praise/defense and nods of approval.
    Last edited: Apr 1, 2014
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  13. Bob

    Bob

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    This is a bug-bear of mine. CBT and GET did not reduce fatigue or physical disability more than SMC.

    In the video that Dolphin posted the other day, Trudie Chalder said that the PACE trial was originally set up to compare the effectiveness of CBT and GET with SMC:

    @ 3:20 "So really this particular study was carried out in response to the fact that although earlier smallish trials had been conducted, some of the patient organisations were not convinced by these studies and felt that adaptive pacing therapy and specialist medical care would be a better alternatives."

    I don't know how accurate it is to say that patient organisations were interested in SMC. Is that perhaps a bit of artistic license? If the trial authors wanted to show that CBT and GET were better than SMC, then they failed in their study design, and in their results.
    WillowJ, maryb, Valentijn and 4 others like this.
  14. alex3619

    alex3619 Senior Member

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    Translation: "babble babble babble babble ...."
  15. alex3619

    alex3619 Senior Member

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    NO. Bad idea. Take your untruth meter with you and it will explode when its overloaded! Ditto the others.
    peggy-sue and Bob like this.
  16. Bob

    Bob

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    hehe.... Is that a google translation? ;) (They're not always accurate, but it seems unusually accurate this time!)
    Last edited: Mar 31, 2014
  17. alex3619

    alex3619 Senior Member

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    I have read several places that patients are indeed interested in specialist medical care. However what they mean by specialist would rule out 99.99% of the "specialists" in the UK. They mean people like Nigel Speight.
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  18. biophile

    biophile Places I'd rather be.

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    Indeed. SMC in the PACE Trial specifically prohibited any experimental treatments.
    Valentijn and justy like this.
  19. biophile

    biophile Places I'd rather be.

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    I wonder if they consciously decided not to do this seminar a day earlier on 1st April i.e. April Fools' Day.
    Last edited: Mar 31, 2014
  20. biophile

    biophile Places I'd rather be.

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    @ Bob and Alex.

    [​IMG]
    Valentijn, peggy-sue, justy and 2 others like this.

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