Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Ash said:
Umm @Peter Trewhitt.
Whether they mean it to or not.

Though, I think we already know, no organisation can possibly be ‘incompetent’ enough to forget how to respond to the concerns- of patient advocate and groups- repeatedly expressed year after year.
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My feeling is that Cochrane has a long standing problem in its structure that allows a small group of researchers to hijack a topic area for their own self interested biases and beliefs. Obviously when the withdrawal of the previous draft of their exercise review seemed on the cards it transpired that Cochrane lacked any editorial muscle and by allowing the flawed current 2019 redraft to be published against their apparent wishes at that time it represented structural weakness rather that either incompetence or a deliberate policy decision.

Then Cochrane attempted to side step the issue by starting a completely new review process, implicitly acknowledging their failure up-to then to meaningfully address patient concerns by establishing an entirely new approach to developing reviews that places patient/consumer representation firmly as part of the process. That in four years nothing meaningful has happened leaves us with various options including:
  • Cochrane remains completely unable to establish editorial control over its clinic topic authors and is continuing to use obfuscation to try to hide this weakness.
  • Cochrane has back tracked on its intention to produce a replacement review with patient representation and is intentionally acting either to protect the GET paradigm or to obstruct patient involvement or both.
  • Cochrane is being subject to pressure by advocates for GET and just does not know how to deal with the situation of internal/external conflict. We know that NICE was subjected to enormous external political pressure that tried to subvert their new guidelines, but that when put on the spot the critics failed to present any substantive evidence. Presumably Cochrane is being subject to similar pressure, so are we seeing that Cochrane lacks either the resolve or the sophistication displayed by NICE?
Hopefully any reply to our letter will give some insight to what is happening.
 
Peter Trewhitt said:
My feeling is that Cochrane has a long standing problem in its structure that allows a small group of researchers to hijack a topic area for their own self interested biases and beliefs. Obviously when the withdrawal of the previous draft of their exercise review seemed on the cards it transpired that Cochrane lacked any editorial muscle and by allowing the flawed current 2019 redraft to be published against their apparent wishes at that time it represented structural weakness rather that either incompetence or a deliberate policy decision.
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In other words this demonstrates that Cochrane cannot be seen as a trusted source of information
 
Adrian said:
In other words this demonstrates that Cochrane cannot be seen as a trusted source of information
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Rather than saying Cochrane should never be a trusted source, rather it should be treated with caution as it is at risk of specific topic areas being hijacked by narrow groups of researchers seeking to promote their own self interest. The quality of individual reviews depends on the objectivity and intellectual rigour of its authors, though I would agree that it is increasingly Cochrane as an organisation can be no longer trusted to police the quality of individual reviews.

But certainly Cochrane would seem no longer entitled the accolade of producers of the gold standard of reviews, rather each review should be considered only on its own merits.
 
I agree it’s not the fault of individual reviewers who might in some cases have done an excellent job of reviewing the evidence, on occasions where they weren’t marking their own homework say.

But if Cochrane is structurally too weak to support the best evidence in every case then then it has to be assumed that anything with their name on is likely to require review.

Also I would say Cochrane is making a deliberate decision, maybe under duress maybe not, to let this review stand, as in it is their decision and they are making it.

If under duress it would be to save themselves and throw us under the bus. But that’s still a choice. It is deliberate.

It’s also morally bankrupt. They are an organisation no one’s gonna die but we on the other hand are actual human beings and we are dying from lack of medical care and psychological trauma due to being shunned and abused by our society lead on by the psychology and medical establishment.

Can someone remind me who it was that originally bestowed Cochrane this title of ‘gold standard’?
 
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Peter Trewhitt said:
My feeling is that Cochrane has a long standing problem in its structure that allows a small group of researchers to hijack a topic area for their own self interested biases and beliefs.
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I have come to see things rather differently, having tried to engage with various founder members of Cochrane. These self-interested biases and beliefs ARE the Cochrane ethos. The bias is to primary care management using non-pharmacological means rather than specialist referral centres, seen as 'over-medicalised'. The ethos was always anti-science and pro 'holism' however surprising that might seem. The organisation was set up to curb unwarranted use of drugs. It did that successfully in some areas. But there was never the commitment to reliable evidence that was the facade.
 
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Jonathan Edwards said:
I have come to see things rather differently, having tried to engage with various founder members of Cochrane. These self-interested biases and beliefs ARE the Cochrane ethos. The bias is to primary care management using non-pharmacological means rather than specialist referral centres, seen as 'over-medicalised'. The ethos was always anti-science and pro 'holism' however surprising that might seem. The organisation was set up to curb unwarranted use of drugs. It did that successfully in some areas. But there was never the commitment to reliable evidence that was the facade.
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Very interesting.
 
Interesting, thanks for that perspective @Jonathan Edwards. It no longer surprises me, after seeing the way Paul Glasziou, a founding member of Cochrane, behaved towards pwME on Twitter when we tried to engage him with concerns about the White et al paper about the NICE guideline, of which he is a signatory. He refused to discuss any of the points in the paper, and was arrogant and dismissive towards patients.

I just found this about him on a quick Google search:
Paul Glasziou talks overdiagnosis, over treatment and the future of health
Paul Glasziou (aka The Surfing Professor) joins Ray Moynihan on episode five of Cochrane Australia's podcast, The Recommended Dose, to share insights from his stellar career as both a family doctor in Brisbane and a global evidence guru at Oxford and Bond Universities. He explores big picture health issues like overdiagnosis, overtreatment and the implications of genomic testing, alongside important questions for our everyday health - like how you can find and use evidence and put it to good use when visiting or choosing your own doctor or specialist.
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Yeah and what does he think about the important questions raised by stats on late diagnosis of cancer, people with MS saying they were previously diagnosed with cfs, etc etc etc

as for taking evidence to your Dr - talk to your cronies Dr G they will remind you that focus on symptoms = health anxiety, catastrophising
 
Jonathan Edwards said:
I have come to see things rather differently, having tried to engage with various founder members of Cochrane. These self-interested biases and beliefs ARE the Cochrane ethos. The bias is to primary care management using non-pharmacological means rather than specialist referral centres, seen as 'over-medicalised'. The ethos was always anti-science and pro 'holism' however surprising that might seem. The organisation was set up to curb unwarranted use of drugs. It did that successfully in some areas. But there was never the commitment to reliable evidence that was the facade.
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I've also wondered if they are people who talk about doing trials rather than those who actually do them. Also who talk about evidence but who have no underlying theory of evidence (i.e. nothing grounded in logic or baysian statistics etc - and I don't think they even have a good conceptual model of producing evidence and things that can go wrong).
 
A reminder that, if you have a spare moment, liking some of the comments could give encouragement to people, and bring the best comments to the top.

Thanks to Peter Trewhitt for responding to posts in the discussion under updates.
 
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