TeamClots vs Cochrane

Discussion in 'Long Covid news' started by SNT Gatchaman, Jul 2, 2024.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    Posting this not about the scientific arguments about microclots, which we have discussed in the individual papers, but more about their experiences in interacting with Cochrane.

    Note the below link from Doug Kell's blog is from a non-secured server (http not https) and the page formatting is not particularly ME-friendly, so will be much easier if you use your browser's reader function.

    Regardless of our opinions on the validity or otherwise of microclots, I think we would all agree with their views on Cochrane.

    Relevant passages below —

    Dealing with clots
    A lot of Cochrane

    Just as in the control of the mainstream media by politicians, control of the scientific media by vested interests is both undesirable and commonplace. Editors of scientific journals are very powerful and largely immune from the control of working scientists whose views they do not choose to espouse (nor even understand). Similarly, scientists who are maybe more interested in politics and funding can thereby profit by infiltrating themselves and/or their ex-staff into the agencies that control funding and publication in vanity journals.

    ...

    Cochrane reviews have been widely seen as authoritative surveys of areas of medicine and therapy, though recent changes, seemingly to a more ‘commercial’ model, have seen a major decline in their prestige as well as the withdrawal of NICE/NIHR funding.

    In response to what amounted to an opinion piece by Fox et al. attacking our work while masquerading as a serious review, Prof Resia Pretorius and I submitted the below response on August 3rd, 2023, and received from ‘Eva’ (support@cochrane.org) an acknowledgment of receipt, and on August 10th, 2023 a reply from Christine Schorfheide, Cochrane Evidence Production & Methods Directorate (comments-cdsr@cohrane.org) stating “Thank you for your comment on the Cochrane Review ‘Plasmapheresis to remove amyloid fibrin(ogen) particles for treating the post-COVID-19 condition’. Given the sensitive nature of its concerns, we are currently seeking advice from our publisher before posting the comment.”

    ...

    Since then, more than three months ago, we have heard precisely nothing despite multiple attempts to email Cochrane at comments-cdsr@cohrane.org. No comments presently appear (November 12th, 2023) on the relevant part of the Cochrane website, although Comments appear on another review related to clotting.

    ...

    Dear Dr Soares-Weiser,

    We are writing to express our deep concern about a recently published paper entitled “Plasmapheresis to remove amyloid fibrin(ogen) for treating the post‐COVID‐19 condition” by Tilly Fox et al. (Cochrane Database of Systematic Reviews, July 26, 2023) [1]. We do so because, as well as being a transparent and purposive attack on a small subset of our own published findings, it falls so far below acceptable scientific standards that it imperils the reputation of your journal.

    ...
    [Rebuttal]
    ...

    We are also very concerned that one of the authors (Garner) is a member of your Editorial system (so may have had an influence in allowing this paper to be published), and has a public persona in which he has tried to maintain the entirely discredited psychological theories of diseases such as Long COVID and ME/CFS. Clearly organic findings such as our own show that the psychological explanations are nonsense.

    ...

    Sincerely,

    Resia Pretorius and Douglas B Kell
     
    Last edited: Jul 2, 2024
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  2. RaviHVJ

    RaviHVJ Senior Member (Voting Rights)

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    I haven't read the Cochrane review and I'm in no position to judge the science surrounding microclots. However, Garner's involvement does seem to completely undermine any sense of Chocrane's objectivity - I'd be very surprised if Paul Garner didn't initiate this review as a way to undermine the biomedical literature around Long Covid. That is certainly how he's subsequently used the review - as a way to bash biomedical interpretations of Long Covid and to push a psychosocial standpoint.

    Which is an incredibly bad look for an organisation that is meant to be the foremost voice on objectively analysing evidence on important and controversial topics. It'd be one thing to have had a set of haematologists picking apart Kell and Pretorius's various studies, but to have someone with such an obvious vested interest in bashing the microclots theory is pretty poor.
     
    Last edited: Jul 2, 2024
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  3. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    It would be nice for a G Monbiot or journo to get in at this stage and follow the bad science for a bit. It feels like this has the right ingredients to Bea story in its own right and a good live example of how BSP poisons the field.
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But isn't that just the point being manipulated here?

    As far as I remember Kell spent much of his career in the same sort of unaccountable position of power he is griping about with editors and Cochrane - as the CEO of a major funding body, deciding whose research survived and whose not. His blog reads a bit like a Richard Horton outburst putting the world to rights but targeting the wrong people, and thereby covering up the real agenda - to pull rank.

    The review in question may include Garner but it also includes the name G Towers, which I presume is Greg, whose understanding of the technical realities of this sort of science is comparable to Simone Biles's understanding of where her feet will land after a triple somersault. Kell is jousting with people who know their stuff, and in the process getting egg on his face, at least as far as I can see.

    And it is relevant that there is no way that it can be ethical to do plasmapheresis on people to remove 'micro clots' that have never been documented actually unpeople and whose ability to survive centrifugation nobody has yet explained.

    The mention of Garner is precisely to deflect the argument towards irrelevant weaknesses of Cochrane, which we can all agree on but, like 'the flowers that bloom in the spring...'
     
  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    Apparently CEO of Biotechnology and Biological Sciences Research Council 2008-13, according to Wikipedia.

    I omitted the rebuttal arguments above, as for this thread I simply wanted to note the similar experience of radio silence etc from Cochrane. But in regard to plasmapheresis and the ethics thereof, this is what they said in their letter —

    Later they say —

    Our thread for that paper is Plasma from patients with pulmonary embolism show aggregates that reduce after anticoagulation (2023, Nature Communications Medicine)
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Isn't that more of the same disingenuousness?

    we want to clarify that we have not published any data supporting plasmapheresis as a treatment for PCC. The paper mistakenly links our research on amyloid fibrin(ogen) to the endorsement of plasmapheresis without any evidence that we have done so, which is both misleading and unfounded.

    Maybe they have not recommended plasmapheresis in so many words but I seem to remember some connection between South African and German goings on with expensive microscopes and things and their findings are what are being talked about as the justification for blood filtering procedures of various sorts.

    The comment about clots reducing with anticoagulation in PE patients seems non-sequitur. These are people with clots in vivo and clots in vitro. So far Kell and Pretorius do not seem to have demonstrated either - just amyloid precipitates in tubes.
     
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  7. MeSci

    MeSci Senior Member (Voting Rights)

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    (re Douglas Kell)

    Maybe showing my ignorance here, but was surprised by:

    "He graduated from the University of Oxford with a Bachelor of Arts degree in Biochemistry in 1975 (with a Distinction in Chemical Pharmacology)"

    Arts? Surely it should be Bachelor of Science?
     
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  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    This is an anachronism of Oxford, all undergraduate degrees are ‘of Arts’ regardless of the actual subject. They just never got round to changing the wording when science subjects emerged.
     
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  9. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    There was no reason for Cochrane to do this review in the first place, apart from to rubbish Kell and Pretorius's exploratory work. Cochrane were set up to systematically look at the evidence behind established, or at least reasonably widely used treatments and diagnostic tests, to establish if they were really beneficial or not. Hence their emphasis on randomized trials which are the best test of treatments, ideally done "in the wild" as far as possible. Whether Garner and co are right to question the theory about micro clots, they are of course right to question treatments which are based on an unproven theory. But that's not what Cochrane reviews were originally set up to do. They are using the Cochrane name to rubbish scientists exploratory work
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am not sure that that is entirely fair. Pandemics are unusual situations where potential areas of treatment for review emerge as of nowhere very fast. And potentially very large numbers of people are put at risk by unproven therapies. I have been shocked as to who in the medical profession is happily making use of anti-thrombotic therapy without any solid evidence, including in children.

    The fact that Cochrane was not set up to do reviews of rapidly emerging new fields seems to me more to do with the fact that this is not such a common situation than that the policy had any inherent merit. If I were involved in Cochrane I would have considered it essential to get a review of this out quickly, knowing what I do about the way risky unproven treatments are being encouraged. And like it or not Dr Pretorius and Dr Kell have to take some responsibility for that situation having advertised their work on social media as hard as they could.
     
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  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Sure. I should look back at what they wrote. I attended a meeting in July 2022 in Oxford where they presented their work and I got no impression they were pushing any treatment at all. They were very excited about their potential discovery, as is understandable.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My gripe is that they did not stop at publicising their results at every opportunity but produced highly speculative reviews about mechanisms that made little sense to me at least. To suggest that the micro clots actually caused symptoms or tissue damage really needed some sort of evidence of something relevant happening in live people. As fa as I know there is nothing.
     
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  13. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    yes. OK. But the fact that Garner has to declare in the review that he has stated publicly that he thinks microclots are not the cause of long covid means that, in my view, he should not have been involved in this review. With such an important subject needing speed and independence, why did Cochrane accept an author with such an obvious conflict of interest?
     
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  14. Hutan

    Hutan Moderator Staff Member

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    That's an interesting question. If I was to suggest to Cochrane that I could be part of a team to update a review on CBT for ME/CFS, should I not be allowed to because I have said that I don't believe that CBT cures ME/CFS?

    Should the writing team on the promised new review of exercise therapy for ME/CFS not have included anyone with prior stated views about the topic?
     
  15. Sean

    Sean Moderator Staff Member

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    randomised controlled trials

    It is the controlled bit that is the core. Randomisation is just one form of control, albeit an important one. On its own it is insufficient, however much the psychosomatic club may wish it to be sufficient.
     
    Last edited: Jul 4, 2024
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    @Caroline Struthers

    Caroline,
    You know that doesn't make sense. I was asked to give my expert witness testimony on problems with trials for ME/CFS to NICE precisely because it was known that I had such views and that they appeared to be relevant.

    Having a view is NOT a 'conflict of interest'. It is, as Ilora Finlay put it, a sign of 'being interested' which is entirely compatible with 'being disinterested'.

    Would you exclude from any committee on homeopathy anyone with the prior view that diluting substances to the point of disappearance was unlikely to make them more potent?

    A conflict of 'interest' in the different sense of the polysemic word, is a conflict of motive. Being interested in something does not imply any sort of motive. We can be interested in palaeontology without having any motives about it.


    Kell and Pretorius are using specious arguments to protect their interests. We mustn't fall into the trap of doing the same.
     
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  17. Nightsong

    Nightsong Senior Member (Voting Rights)

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    It may not be a conflict of interest in the classical sense but allowing Garner to be involved with such a review such as this shows poor judgement on Cochrane's part. Garner has gone well beyond just expressing his views: his views of trials like PACE ricocheted around with his personal experiences; there was no intellectual consistency to them. He was on record as disparaging PACE when it suited him and now is in favour of body-mind drivel because feelings.

    Simply from the point of view of general acceptance of the review as accurate and unbiased among patients and patient organisations (much more important in this particular case when people are seeking unapproved treatments abroad) he could have been left out. If the review had been conducted by disinterested haematologists it might have carried more weight among those groups. If the point is to protect against avoidable harms this should've been considered; right now, Pretorius et al can just say "this is an example of a well-connected Cochrane insider using his privileged position to undermine views at odds with his own" and present themselves as patient champions.

    Also, even though I think the Cochrane authors are largely correct in this particular case, making criticisms of others' experiments and not allowing the experimenters whose work you're critiquing the opportunity to respond on the grounds that their critique is "sensitive" is just academically ill-mannered.
    Cambridge, too.
     
    Last edited: Jul 4, 2024
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  18. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    OK will check their arguments. Why are Garner's arguments not specious? Is not OK to try and defend your work as being valid and useful? I think the review was motivated not by a desire to find out if this biomedical theory had merit worth investigating further, but to shut it down. Of course, I could be wrong, and I am definitely biased against Cochrane and its motives!
     
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  19. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Giving expert testimony not the same as writing a Cochrane review
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    It shouldn't, but this has happened many times before. Only for expressions against psychosomatic models, though. When they're favorable, even the most biased ideologues with blatant conflicts of interest are presented as neutral observers, even if they have long been major influencers. PACE was many times framed this way, including by so-called skeptics.

    Standards are meaningless when they're arbitrarily applied. It would be acceptable if it didn't apply, or applied consistently, but instead it varies a lot, and only applies when it's unfavorable to psychosomatic preferences.

    I assume that in many cases, excluding the only experts in the world with prior experience from Long Covid research is in large part because of that. The double standards are extremely damaging, worse even than bad standards.
     

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