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

Trish said:
If Karla Soares-Weiser had been serious about the 2019 review being already out of date at the time of publication, why did she publish it? She is editor-in-chief, having taken over in June 2019 from David Tovey who had asked the authors of the review several times to change it and still wasn't satisfied, as far as I can see, at the time he left.
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If I remember correctly, Tovey finally agreed with the authors to let an arbiter decide about the conclusions regarding the quality of evidence before he left. They also agreed on the person who should act as arbiter. So it seems according to Cochrane rules Soares-Weiser had not much choice but to follow the arbiters' opinion.

Don't want to defend anyone, just tried to recall some details of what actually happened.

Trish said:
If she was serious about it only staying in place for a couple of years until a new review was published, why hasn't she withdrawn it yet?
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Agree. Even if Cochrane has made it much more difficult to withdraw reviews in the meantime (Hilda posted about that), I think there is enough evidence the editor-in-chief could have considered as reasons to withdraw the current review.

As @rvallee has pointed out somewhere, Cochrane even failed to act properly about the wording in the prominent 'masks' review being as misleading as it still is and being misused by all kind of opponents of mask mandates and Covid belittlers and deniers.

Why does Cochrane have better rules to protect their authors than to protect patients (or 'consumers' as they use to call people dependent of good health care)?
 
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I have just been re-reading this article by Hilda Bastian and some of the discussion about it.

'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian February 2019

It clearly doesn't matter so much after all, at least to Cochrane, if the lack of progress on the review is anything to go by.

I think part of the problem may be that, even though Hilda seemed to understand and describe well some of the issues, it was characterised very much as a consumers versus scientists disagreement, more than as a deep and entrenched problem with the so-called science - even to the extent of the title of the article revolving around consumers contesting evidence, rather than calling it something like 'Bad science harms patients'.

And she clearly didn't understand the difference between pacing and GET, quoting a dreadful old AfME definition of pacing that was actually a version of GET and that claimed their version of 'pacing' could lead to recovery. She also stated PACE shows some people recover with GET, also false.

When understanding of the issues is only at a surface level, such mistakes can be made, and the understanding of the urgency of the situation is weakened.

I think the fact that the IAG was set up in this case and token representation of 'consumers' included in the IAG and editorial group with criteria including geographical, whether someone is an 'activist' or not, and whether someone has 'recovered', is symptomatic of that problem. That sort of 'representation' may be OK for discussion with consumers over whether they prefer their blood test to be taken by the practice nurse or the GP, but it's not OK when deep understanding of flaws in research methodology is at stake.

Why was the focus on 'consumer' inclusion not based on the ability to comprehend the problems with the 'science'. On that basis people who had submitted cogent analyses of the problems with earlier reviews should have been first on the list to be invited, and applications invited and vetted on the grounds of sound grasp of research methodology in these trials?

It's time I stopped cogitating on the failure of Cochrane. It's only making me very sad and angry that their incompetence and continued bowing to purveyors of false 'science' has led to the blighting of so many lives.

To return to the subject of the thread - this petition - I hope the people at Cochrane addressed in our letter and petition take the time to read lots of the nearly 400 comments. I have read them all, and many are heartbreaking.
 
As I thought, way beyond the deadline for professional politeness in terms of a lack of response. They aught to be well past the first holding email and on to an issue based response. But they are not.

A very public show of contempt, this lack of response. Or gross incompetence and mismanagement, one or the other. Or both at once.
 
Sean said:
I appreciate the efforts of those within Cochrane trying to move this forward, and in the right direction.

But if Cochrane the institution are having so much internal trouble resolving this – which they indisputably are – then the minimum position they can reasonably take is to temporarily withdraw the review until a resolution of its status is achieved.

As it stands they have chosen the worst possible position, neither withdrawing it nor advancing its resolution.

Shit or get off the pot, Cochrane. You have no more excuses for delay on this critical and urgent issue.

Not impressed with BACME's position on it all either.
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They were publicly cowed into backing out by loud attacks from influential MDs like Clare Gerada. She was not alone in making those threats, they were very explicit in how they meant to harm the organization if they want ahead with it. And no doubt Wessely made his own private threats, he's done this his whole career. I think the vehemence of this response got a bit lost in this. They have since lost a lot of funding and status, and no doubt feel the pinch of losing even more status if they anger some very powerful members of the British medical aristocracy.

In the end they chose the least worst option for them, it just happens to be the worst one for us, but that doesn't factor in their decisions. Which is why this organization deserves to metaphorically burn to the ground, but that's beyond the scope here.
 
MSEsperanza said:
Agree. Even if Cochrane has made it much more difficult to withdraw reviews in the meantime (Hilda posted about that), I think there is enough evidence the editor-in-chief could have considered as reasons to withdraw the current review.
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I don't believe a word of that. Cochrane has given us every reason to assume their word is worthless. The review wasn't retracted because Cochrane view this as the best option for their reputation, there isn't more to it.

They were loudly and publicly threatened if they did retract it, and they chose the cowardly way out. The easy way out. One that harms millions, but they're oblivious to it so it doesn't count. They're comfortable in their gated compounds, what goes on in the real world doesn't affect them. As close to a modern aristocracy as billionaires are to the poorest in the world.

They were able to withdraw the dreadful "masks don't work" study, and I don't believe for a second that the authors agreed to it. They were forced to. Rules are just words somewhere, it's enforcement that matters. Here they just choose to pretend to be bound, when in fact they are definitely not. Just as we see with NICE, how clinicians used to be bound by it, and now they aren't anymore. It's not as if it makes sense to apply this retroactively to a decision that was already made anyway, and they've shown that they'll overrule if needed for their reputation.

They said a lot of things about this new review, and indeed somehow published a review that was already outdated? By their own admission? I'm sorry but here we are clearly in an exception to Hanlon's razor: it is malice, incompetence does not suffice to explain what is happening. They are choosing to do what's best for their reputation at the direct suffering of millions of lives. This is what the authors of the review have done, and what the entire academic discipline related to psychosomatic medicine has done forever. They do this because it's good for them, the rest of medicine is all too happy to let this go, in fact they will be very angry when anything about it changes.

We are in the golden age of psychosomatic ideology. It's never been more powerful and strongly believed. There are huge politics and a significant industry that need this to keep going. They are not concerned with the patients at all, the ideology forbids it. They decided that we are not ill, and cannot believe otherwise as it would confirm that they did enormous harm. Which they did, but until it's acknowledged it means no consequences.
 
Trish said:
I found it myself. It was the awful Reuter's article by Kate Kelland that said Cochrane had withdrawn the review back in 2018 and Clare Gerada was all over Twitter insulting patients, including me.
https://www.s4me.info/threads/cochr...temporarily-withdrawn.6225/page-9#post-113097
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I don't remember exactly, but I think there was a bit more direct than that. Not "we will ruin your organization" direct, but the sub-text was clear. And she wasn't alone in this either.

And as we saw with the NICE guidelines, what we see in public is just the tip of the iceberg. I wrote many times that I suspected this was going on and I was right about it. It's not exactly subtle, there is a clear sense of entitlement over bullying us and anything having to do with helping us.
 
So far 401 people who signed the petition have also added a comment. I have read them all, and thank those who have commented. They make a powerful testimony to the harm that GET has caused to so many.

I hope the people at Cochrane with the power to withdraw the 2019 Larun et al review immediately find the moral strength to do so regardless of Cochrane's own rules and forces opposing this action.
 
Trish said:
So far 401 people who signed the petition have also added a comment. I have read them all, and thank those who have commented. They make a powerful testimony to the harm that GET has caused to so many.

I hope the people at Cochrane with the power to withdraw the 2019 Larun et al review immediately find the moral strength to do so regardless of Cochrane's own rules and forces opposing this action.
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To be guilty of stating what, to our members, is the obvious, but … … …

I too have read all the comments at least once and some several times. They do make, as @Trish said, ‘a powerful testimony’. A very clear counter to those high profile exercise advocates who say ‘they have patients who recovered as a result of GET’, however they might try to redefine it. There rightly is a much lower bar for stopping a drug treatment as a result of examples of harm, than there is for universally applying a treatment on the basis of anecdotes of efficacy. Unfortunately there is, at least here in the UK, no mechanism for recording harm linked to behavioural/psychological interventions, indeed it seems likely that many of the great and good exercise true believers will not even admit the possibility of harm arising from their interventions.

This morning I also reread our letter to Cochrane and all the associated material, including the petition and its updates, which seem to me very compelling. I find it very hard to see how Cochrane could defend its apparent inaction in relation to the exercise review over the last few years, on top of its dilatoriness over the previous best part of a decade, though I suspect there is a lot of politicking happening behind the scenes, especially as BACME’s response to our Committee, in connection to our petition, suggests they are privy to information that Cochrane has so far withheld from patient groups and the wider community.

At present, at least through obstruction and obfuscation, Cochrane is effectively in direct opposition to the UK’s NICE, the US’ CDC and the overwhelming majority of patient groups internationally and are in effect promoting an intervention harmful to a probable majority of people with ME and a significant proportion, if not also more than half, of people with Long Covid (who also experience PEM, meeting the diagnostic criteria for ME/CFD).

This highlights that Cochrane’s checks and balances are inadequate to defend their output from the prejudices of a small number of, albeit influential, clinicians and researchers pushing their personal vested interests. Presumably these same vested interests are even now trying to portray our letter and petition as evidence for anti-science activism and for a refusal to accept a psychological description of our condition. However, increasingly it is clear that their interventions do not work and indeed cause harm for people experiencing PEM regardless of any theories or beliefs about aetiology, increasingly it is clear to those able to stand back that their position is the anti-science one.
 
Normally I am resistant to conspiracy theories, given laziness, stupidity or wilful blindness arising out of self interest are much more likely explanations, however given we saw in the NICE ME/CFS guidelines review process a senior member of a British medical Royal College seeking to pressure NICE to falsify their already agreed evidence review in favour of GET/CBT it is probable that members of the same circle of academics and clinicians, some of whom have roles within Cochrane, are trying to exert pressure to retain published support for their own vested interests.
 
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