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The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

Discussion in 'General ME/CFS News' started by Cheshire, Jul 19, 2017.

  1. alex3619

    alex3619 Senior Member

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    (PS In this process I discovered it is still legal for patients to secretly record medical interviews in my state, though not in most states of Australia.)
     
  2. trishrhymes

    trishrhymes Senior Member

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    I've just read the abstract of the Cochrane review that Brurberg was involved in writing. I now see where he's coming from more clearly. They seem to have taken all the studies they included at face value as if they were high quality studies and simply looked at the numerical data without any understanding of underlying issues, or even of what ME is.

    How on earth can Cochrane be taken seriously if it's just number crunching.

    Brurberg is a medical physicist who got his PhD for medical imaging and seems to have moved sideways into assessing the quality of clinical research with no medical training or understanding of the need to look below the surface at possible flaws in the methodology.

    How very useful he must be to the likes of the PACE authors. He's being used. I wonder whether he realises this.
     
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  3. Tom Kindlon

    Tom Kindlon Senior Member

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    I'm trying to post comments on the site but am having difficulty. Is anyone else?
    Here is a quick second comment for what it is worth:

     
    Last edited: Jul 20, 2017
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  4. alex3619

    alex3619 Senior Member

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    This quote might be of relevance with respect to exceptions being made for irrational conduct, which most definitely applies with some of the PACE stuff:
    http://www.claims.co.uk/common-questions/medical-negligence/what-is-clinical-negligence
    This may indicate that demonstrating that the PACE results are unfounded, which the PACE group did themselves with their long term followup and to a lesser extent their fitness mitigation paper, may indeed give rise to a capacity to enable legal action against doctors in which GET has done harm.

    The crucial point here, and which can be expected to be rigorously defended with "expert" witnesses, is that it has to be determined that the probability that GET resulted in substantive measurable harm is over 50%. That might still be hard to do.

    However even if we can finally quash PACE, action against doctors who recommend GET and this results in harms might not be retrospective.
     
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  5. Kalliope

    Kalliope Senior Member

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    I heard a lecture on ME, CBT and GET from his compatriot and Cochrane-review colleague Lillebeth Larun last year. She actually made a point of not seeing ME-patients, just reading trial-papers, and thus had a better grip on the real answers.. She seemed very genuine and convinced that the research behind CBT/GET and ME is solid.

    EDIT: Her background is as a physiotherapist. She talked about following guidelines as a physiotherapist back in the 1980's and recommending parents to put their babies to sleep on their stomachs. That advice probably led to sudden infant deaths. Realising that research and medical advice could get something so wrong, made her devote her career to investigate research. o_O

    SECOND EDIT: I thought the same regarding Larun as @trishrhymes about Brurberg. They are being used. It might not even have occurred to them that "prominent" researchers as the PACE-team can get anything seriously wrong.
     
    Last edited: Jul 20, 2017
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  6. alex3619

    alex3619 Senior Member

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    A busy doctor has the defense that they do not have time to fully investigate every aspect of the science. A reviewer does not. There are multiple major flaws in PACE, a few of which should invalidate the entire project on their own, and even more that put it in severe doubt.

    Others have their preferred main problem I am sure, but to me its still that the lead investigator wrote about the problems with using standard deviation on SF36PF data, and then used this biased and invalid mathematical process. Deliberately. Then they did not even mention the problem, caveats, or how the calculation is invalid. Then they promoted it as good science.
     
  7. Snow Leopard

    Snow Leopard Hibernating

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    Legal in Qld, NT, illegal in other states?
     
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  8. Woolie

    Woolie Senior Member

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    I'm maybe a lone voice here, but I'm not that keen on James Coyne's method of attack. The Brurberg article was very lightweight, but I would have preferred to see it criticised on its own merits (or lack thereof), rather than implying the author is somehow in cahoots with the people he recommends to review.

    Of course you're going to pick people sympathetic with your viewpoint, it would be idiotic not to. Unless there's a genuine COI - not just a common perspective - there's not much of a case to answer. The journal could just decline to use those people, that's all that's needed.

    Sometimes the Coyne rhetoric just goes one step further than I'm comfortable with.

    I suppose its a personal preference, how "reasonable" one should be when battling the claims of those who are not reasonable. Maybe that stuff has its place - fight fire, with fire and all that. But I guess I prefer the idea of us being in totally, completely 100% in the right.

    I'm very angry about how these psycho medicine believers are controlling the debate. There's huge bias. But I just don't like this particular tactic.
     
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  9. alex3619

    alex3619 Senior Member

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    Also legal in Victoria, apparently. I would want to confirm this before doing it though ... just because some web site or paper says it is legal is not an excuse to do something potentially illegal. I think I got it off a web site, but I could be wrong, I read so many things yesterday.
     
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  10. alex3619

    alex3619 Senior Member

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    Yes. Its a political tactic. The problem we face though is that, being reasonable science types, we are ill suited to politics. I would never be a politician. This is why psychobabble is hard to fight. Reasonable people, rational people, are often ill equipped to fight the psychobabble politics. We will win eventually, but great harm is done along the way. " Eventually " can take lifetimes.

    The article by Brurberg is based largely on persuasive rhetoric, and not logic and evidence. I think that is part of the statement as to why the editor rejected it ... old and erroneous arguments do not deserve to be published. Coyne, on the other hand, has explained his reasoning in detail. I have far less a problem with Coyne than Brurberg on this issue.

    However Coyne does demonstrate one major point I have to agree with. Its far better to deal with these issues by bringing them into the open, and so to be subject to open debate. Secrecy, hidden data, etc., have no place in evidence based medicine. I suspect that keeping reviewer information private has also reached its used by date.

    Sadly the divide between science and politics is as fraught with conflict as ever. By that I include goals and methods, not just specific topics. I think this is unlikely to change until humanity changes.
     
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  11. Valentijn

    Valentijn Senior Member

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    NICE also says that heart rate monitors should be used with GET. Even the "experts" don't do it, and often even discourage it.
     
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  12. Sean

    Sean Senior Member

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    Link?
     
  13. trishrhymes

    trishrhymes Senior Member

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    Responses to the Mental Elf article are almost all making points of substance about the content of the article, which is good. I see no harm in Coyne's single intervention linking to his blog which reveals part of the peer review and subsequent rejection process - I think it's good this has been brought out in the open.

    The fact that of the 50 comments, the only one the article author has responded to is this one from Coyne speaks volumes about his petulance at being rejected and his apparent unwillingness to engage with the substantive issues of error in his article.

    He may come to regret his childish behaviour when PACE is finally publicly debunked and treated as the pseudoscience it is. His response and his defence of his error ridden, ignorant article is on the record.

    Perhaps one day he will learn that doing meta analyses of medical trial data should be more than just the number crunching exercise he seems to have been happy to participate in in the Cochrane review. True analysis requires understanding of research methodology and digging deeper into the background of the trials being included to test their data for validity. As a medical physicist who has moved sideways into data analysis he has a lot to learn.

    Sadly he seems unwilling to learn. I really hope he reads the comments and realises he has been grossly misled by the PACE fanatics.
     
    Last edited: Jul 21, 2017
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  14. Valentijn

    Valentijn Senior Member

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    He also responded to a comment from @Keith Geraghty - I think it's at the very top of the comments. But he has no defense for any of the criticisms of the article content itself.
     
  15. trishrhymes

    trishrhymes Senior Member

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    Oops, my mistake, but my point stands. He has only responded with whingeing about being rejected. Poor baby!

    I could feel sorry for him being sucked into an argument he doesn't understand. But he's had plenty of time to learn more about ME and about the faults of PACE. He apparently chooses not to.
     
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  16. Stewart

    Stewart Senior Member

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    I think - and I might have misunderstood the sequence of events - that it's not quite as simple as Brurberg just nominating reviewers who shared his perspective.

    He was invited to submit a commentary to JHP, which he did. That commentary didn't make it through the JHP's peer review process. Brurberg appealled against this, requesting the right to nominate his own additional reviewers. The journal agreed to this request - but given his own declared CoI (his connection to PACE through his participation in the Cochrane Review) he was specifically asked to ensure that the reviewers he nominated had no relevant CoI of their own. Despite this, of the three reviewers he subsequently nominated two had close professional and personal connections to the PACE authors.

    The most generous interpretation you could make of this is that Brurberg simply failed to do any due diligence on the background of his nominated reviewers, despite being pointedly told to check this. But the two problems with this charitable interpretation of events are a) rather than accept that he was at fault, Brurberg has instead attempted to use this episode to publicly smear the JHP, accusing it of censorship of pro-PACE views and b) the PACE team 'have previous' when it comes to this type of behaviour - marking each other's homework (as opposed to subjecting it to genuinely neutral, impartial scrutiny) is pretty much standard operating proceedure for them by this point.

    If you want to bring down their house of cards you need not only to expose the bad science, but also the methods they've used to build it and sustain it. Behind the scenes sleight-of-hand like this is how their research got published in the first place. Brurberg's commentary was, as you say, 'lightweight', but the way he's conducted himself - firstly in trying to subvert the peer review process, and secondly in attempting to smear a journal that's been critical of PACE - means that his behaviour definitely deserves to be exposed to the spotlight.

    I'd be surprised if he isn't regretting it right now. His commentary has been torn apart by almost entirely critical comments and his integrity has been damaged by his inaccurate, self-serving account of his dealings with the JHP. I'm not sure what he thought he was going to get out of this, but I doubt he's got it - he's emerged as the villain of the story, rather than the journal that rejected him. What a muppet.
     
    Last edited: Jul 21, 2017
  17. alex3619

    alex3619 Senior Member

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    It was something I read in passing. I will see if I can find it again.

    Edit: https://www.mips.com.au/blog-articles/winter-2015/are-you-being-recorded
     
    Last edited: Jul 21, 2017
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  18. Kalliope

    Kalliope Senior Member

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    Carolyn Wilshire has commented:

    You say, “All trials should be appraised according to the same criteria…” However, your article is effectively advocating for the opposite state of affairs, where behavioural interventions are allowed to be judged as “high quality” even though they are not fully blinded and are therefore highly susceptible to patient self-report biases. Your wish seems to be that these trials should continue to have an unfair advantage over pharmacological trials, and that any bias due to non-blinding should simply be ignored.
     
  19. wdb

    wdb Senior Member

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    an.png

    :lol: perhaps not quite as anonymous as intended.

    And no, lack of blinding is not irrelevant, just because blinding may have been impractical doesn't make the huge bias introduced magically go away, it's like arguing that it's irreverent that this cake used salt instead of sugar because that is all that we had in the cupboard.
     
    Last edited: Jul 21, 2017
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  20. dangermouse

    dangermouse Senior Member

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    That's how it comes across to me too.
     
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