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Royal Free - PACE trial involvement, CBT and GET justification

Discussion in 'General ME/CFS News' started by Sly Saint, Jun 21, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    On Royal Free website:

    CFS/ME research



    "This purpose of the PACE trial was to better understand the possible causes of chronic fatigue syndrome." Really? Since when?

    https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/

    (see also Graded exercise testimonials)
    eta: did they look into cytokines as part of the PACE trial as this suggests?
     
    Last edited: Jun 21, 2019
  2. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Quite tragic that royal free hospital which had an outbreak of an illness similar at least that wrecked lives is suggesting pacing is not useful and exercise is safe.
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think that just demonstrates that when a website is put together by a junior person in a website putting together department who knows nothing about medicine the result is quite similar to what you get with AI but not quite as convincing.

    It is a pity that it is so bad. I like to think there are people in that department who actually understand things a bit better. But maybe they have left.
     
  4. large donner

    large donner Senior Member (Voting Rights)

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    Yes this is definitely justification for cutting student fees down to.....perhaps zero for large numbers of people....in other words not letting them go to college and making them get a real job until they know what the hell they are talking about.

    So many juniors are too confident in their own stupidity and are convinced by the newspeak machine of wikipeda and theres not enough people around to call them idiots and tell them to do it again.

    Still, in an era of all opinions count equally as fact, we don't want to hurt peoples feelings by putting big red marks across their work.
     
    Last edited: Jun 21, 2019
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    What? PACE was explicitly not about the causes. This is something Sharpe and Wessely have often stressed: that they do not care about the cause because they believe there isn't one and all they are interested in is a "treatment".

    Nowhere in the trial is there any material remotely related to the cause. That's either extremely dishonest or incompetent.

    Also the weird phrasing about the 4 main treatments. Standard medical care is not a treatment, that's just absurd. APT was invented as an ersatz pacing to explicitly avoid comparing actual pacing, which itself isn't even a treatment anymore than avoiding peanuts is a treatment for peanut allergy. Do these people just not care about accuracy at all?
     
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Looks like this has been up since at least 2015:

    https://web.archive.org/web/2015092...services-a-z/fatigue-service/cfs-me-research/
     
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  7. chrisb

    chrisb Senior Member (Voting Rights)

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    It would be interesting to know when the Royal Free abandoned their staff, and the likes of Ramsay et al, and adopted the hysteria hypothesis, which was strongly pushed by their neurologist Thomas in the 1980's. One wonders if there was always a tension of conflicting views within the establishment, or whether a change of personnel led to the change of view.
     
  8. Forbin

    Forbin Senior Member (Voting Rights)

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    I call for the immediate release of this clearly suppressed cytokine data! :)




    [By my count, the text of the PACE Trial contains the word "cytokine" precisely ZERO times.]
     
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  9. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Having been at the same table as Gabrielle Murphy at the NICE scoping meeting I can well believe that she OK'd or drafted this.
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    that makes it even worse! the fact that this false info has been sitting there for all to see and no one has questioned its validity.

    It should be raised with the NICE committee. How can someone who OKs this complete distortion of the facts and adds fabricated info to boot be relied upon for considered and accurate decision making of new guidelines?
    @adambeyoncelowe @Keela Too
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    One would expect the explanation to be that the information was produced by some junior person who knows next to nothing about the condition and that the "experts" will claim to have been unaware of the content. If that scenario were to be correct the questions that would need to be answered are, who deputed a non-expert to undertake the work, without suitable oversight, and/or who signed off on this travesty?
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    But is there any hard evidence he OK'd it? Or are you saying that it would be demonstrably implicit?
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    The trouble with testimonials is they are, by definition, very positively biased. People typically only write them if things went well for them. And only the most positive ones will get presented. What we don't get is any sense of how many people were not helped, and how many people ended up worse than when they started - likely being blamed themselves for this if it happens. This sort of advertising strategy is better kept for double glazing companies and the like, rather than a NHS service. But of course it does have parallels with PACE and the whole BPS promotion approach.

    https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/testimonials/
    upload_2019-6-22_10-50-17.png
     
  14. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Man, those blurbs are so canned, I'm not even sure they're real testimonials. Not that you couldn't get people to give you something like them.

    Weren't there some pretty moving testimonials for rituximab? Well, I guess that's why we subject things to careful testing.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    for four years? on their own website. Gabrielle Murphy, in her talk, was singing about the wonders of Google and how she could look something up on the internet if it was raised by a patient.
    They are clearly proud of their involvement in PACE; you'd think that someone from her department or elsewhere might have read it by now.

    eta: maybe someone who isn't blocked could ask Michael Sharpe if he could tell us about this cytokine research that the Royal Free have said was part of the PACE trial?
     
    Last edited: Jun 22, 2019
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  16. Barry

    Barry Senior Member (Voting Rights)

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    I suspect history will show that, given how imprecise the diagnosis is for ME/CFS, there will be a small subgroup of people so diagnosed that GET will help. But I think history will also show that the majority of people diagnosed are not helped by it, and a significant number of those will be harmed, some seriously. Most importantly there is currently no way of knowing beforehand; it's akin to a form of destructive testing to ascertain who falls into which subgroup. Which is why I suspect that if records of all the people so diagnosed and treated were available, then a very different picture might emerge. And even those medical records would not include all the negative experiences I suspect, because some will be people who just dropped off the radar if things went wrong for them.
     
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  17. Barry

    Barry Senior Member (Voting Rights)

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    Like one of the authors of the 2011 PACE paper you mean ... Oh, that would be GM then :rolleyes:.
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Honestly, given everything we know, I assume those "testimonials" are fake. They sound too much like how the psychosocial ideologues themselves would frame praise, it uses their language and that's always a big tell. When a "customer" uses the corporate language, they rarely are genuine testimonials. It's not as if anyone would check anyway.

    Although I do love that the last one is basically: "I'm not healthy yet but hope to be at some point". It's literally aspirational and yet somehow presented as a success. It's so much like MLM jargon: "you are on your way to w(h)ealth by simply being here" met with "I am looking forward to my (hopefully) future w(h)ealth" presented as someone who had achieved it, rather than hopes to.

    What a mess.
     

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