2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Maat said:
Is this question on harms what prompted L Larun out of the shadows after 10 years?




Timing is crucial. Why respond now especially after the abrupt re-dating of the existing review in December 2024?

So, it's time to be reminded of an extract from the response from NICE by Barry et al submitted Oct 2023 and published February 2024 to the above referenced Anomalies opinion piece



Maybe that's why she's talking about GRADE and not the question asked?

Re-dating the Cochrane review to 2024, when and how it did, looks like an attempt to usurp the relevance of the NICE Guideline.

Although, I could be completely wrong. Extraordinary behaviour.
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No I think you are right

and it all uses their same old tactics of using something (wrongly) that they assume no one can be arsed to look into and sound boring and stats and technical-y and just make suggestions that sound assertive enough people assume it’s correct

on this occasion it could be both this the coroners section 28 letter and the implementation plan’ which should be based on the Nice guidelines from end of 2021 rather than this which actually finished before 2017 or something? And was withdrawn in 2018 then reinstated dodgily with the start of this palaver
 
bobbler said:
Yep and I’m cynical tgat ‘the pandemic’ is covering for actually what was going on over that time period which was the draft nice me/cfs guideline (nov 2020?) and then in end oct 2021 it being confirmed but only after a delay from aug 2021 during which we know from the FOIs that texts/emails were being sent unofficially to those in charge that were indeed suggesting all sorts

there’s little chance Cochranhe weren’t receiving the exact same traffic and unofficial ‘suggestions’ surely, probably from the same people, then maybe more (given nice was just UK) given what we’ve seen eg of the tweets on the thread from 2018 when the Larun withdrawal happened
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That's what I alluded to on twitter.
 
Hutan said:
It is face-saving for the authors of the review and for Cochrane to say that the issue is that the understanding of ME/CFS and PEM has moved on
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Important. All the relevant facts we know today were known on the day the very first Cochrane review of exercise for ME/CFS was conceived. Bastian actually framed it correctly, but missed the point: what changed is that some institutions have come around to accepting those facts. But those facts have not changed. ME/CFS was always about PEM, even though it took decades of painfully slow efforts to get minor recognition. Long Covid made that very clear, and only reinforced it because it replicated decades of underfunded research, but did not add anything to it. Yet.

The facts that are problematic for the review have not substantially changed since the 1990s. So I absolutely reject this excuse being used to justify the delays getting anything done. It's also true that they were just as false when NICE made the 2007 guideline as it was in the 2021 update. The evidence is the exact same, there was never a single point in time at which the claims made in this invalid review were any true, or disputed on any other factors than ideology or alternative personal opinions about reality.

Which is a whole set of problems in itself, the root cause problem in my opinion: that evidence is basically irrelevant in evidence-based medicine because it relies on standards that are simply far too low to be of any use, and is excessively biased in every single aspect. Meaning, Cochrane's entire business model.
 
bobbler said:
No I think you are right

and it all uses their same old tactics of using something (wrongly) that they assume no one can be arsed to look into and sound boring and stats and technical-y and just make suggestions that sound assertive enough people assume it’s correct

on this occasion it could be both this the coroners section 28 letter and the implementation plan’ which should be based on the Nice guidelines from end of 2021 rather than this which actually finished before 2017 or something? And was withdrawn in 2018 then reinstated dodgily with the start of this palaver
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Wait, what? This has already been withdrawn once. Can someone point me to the info on why, when etc?
 
Hutan said:
Cochrane has always had a tendency to be suspicious of big pharma, probably with some reason, and instead favouring non-drug treatments. But, there is evidence of 'big insurance' propping up the psychosomatic paradigm proponents of non-drug treatments in order to avoid paying out on income protection insurance policies. Also, because the 'only subjective outcomes in unblinded trial design' recipe is so effective at proving anything works, allowing that design to get a free-ride through Cochrane's reviews means that Cochrane has no way of preventing all manner of dubious treatments that profit corporations at the expense of patients from getting that 'gold-standard' endorsement. And that must, eventually, make the 'gold-standard' and Cochrane derisory.

Another thing that we are concerned about is the acceptance that the review should not be withdrawn, and that a 'do not use' label would be enough. A number of people, and recently Trish in particular, have spent time and effort putting together arguments to show that the level of harm caused by the review is sufficient for Cochrane's standard for withdrawal to be met. We just need someone unbiased and influential in Cochrane to review those arguments. While a 'do not use' label would be a start, there needs to be recognition of the extent of harm that Cochrane has caused if the organisation is to have any chance of avoiding repeating the mistake.
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Especially important because, unlike with medicine, there is no formal reporting system for harms from these type of therapies making the recipients of such therapies particularly vulnerable, as the UK Regulation 28 Prevention of Future Deaths report dated 7 October 2024 establishes. That imposes a higher duty of care in the reviewing process which governments and public institutions will cite as 'evidence'.
 
Maat said:
Wait, what? This has already been withdrawn once. Can someone point me to the info on why, when etc?
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Don't worry, I've now fully read Hilda Bastian's blog. I have what I needed. These advocates, to quote Hilda

We had to go back to the drawing board to re-configure this project a couple of times. Advocates of the intervention launched a full-on bid to try to stop the project.
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are really stupid or desperate, I can't work out which. Either way, neither is a defence to the unimaginable harm they have caused for decades.
 
We had to go back to the drawing board to re-configure this project a couple of times. Advocates of the intervention launched a full-on bid to try to stop the project.
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I missed that bit. I must read it again more carefully.
I wish she'd name them.
Well, they clearly succeeded in stopping the project in the end.
 
I have never been good at identifying people's motives for doing certain things. But I think I missed a really obvious and important motive when it was discovered that the Larun paper was re-dated to 2024 just for adding a single Editorial Note.

It must have been to make it appear that the Larun paper was newer than the latest NICE Guidelines of 2021, so that people who aren't careful in their reading will assume that the NICE Guidelines have been superseded.

I'm sure I'm just re-stating what others have said in this thread already, but it has only just sunk in.
 
Caroline Struthers said:
It was withdrawn in 2018 (I think) and then reinstated because the authors and supporters kicked up a fuss
https://www.reuters.com/article/bus...igue-review-amid-patient-activ-idUSKCN1MR2PH/
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I see Kate Kelland in Reuters wrote this. Wasn't it her who did that interview with Sharpe in 2019 quoting David Tuller?

This from the link

By Kate Kelland
LONDON, Oct 17 (Reuters) - A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients.

Emails seen by Reuters show editors at the influential Cochrane Review journal asking researchers who conducted the analysis, which was published in April 2017, to agree to it being temporarily withdrawn.

They also ask the review's authors to agree to a statement saying their analysis requires "further work in response to feedback and complaints".
Published on the Cochrane Database of Systematic Reviews, Cochrane's evaluations are considered a gold standard in scientific literature and known internationally as dispassionate analyses of the best evidence on a given subject.

"It is unusual for Cochrane to withdraw a review without the authors' agreement and unless new scientific evidence emerges for inclusion in an update.

Scientists conducting studies on potential therapies say they are often harassed and verbally abused by groups that disagree with their approach.

The review found "moderate quality evidence" to show the approach can help some CFS/ME patients, concluding: "Exercise therapy had a positive effect on people's daily physical functioning, sleep and self-ratings of overall health."
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There's your smoking gun. Merry Croft died 23 May 2017. Context and timing is crucial. And they've done it again now, especially during the ME/CFS Delivery Plan process.
 
Chestnut tree said:
Am I right in thinking that FOI is not applicable for Cochrane? Because they are not a governmental organization?
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Charities in the UK are not covered by the Freedom of Information Act, though if this is to do with any official body commissioning Cochrane they are covered by FOI and could be asked questions about Cochrane.

I suppose you would need to identify which bit(s) of Cochrane are responsible for any activity relating to the old and the now abandoned new review and establish if they were funded in relation to this activity by any bodies covered by the FOI. Though of course that/those bodies would still need to try to get the relevant information from Cochrane.

Note. UK Universities and NHS hospitals are covered by the FOI act and if we knew who was likely to have campaigned against a new review, it might be possible to submit requests to their employers.

Also given Cochrane is an international organisation I have no idea if anything could be done in other countries such as in Norway where Larun and colleagues are based or in Australia where Paul Glasziou is active perhaps through their employers if charities are also exempt there.

[edited - final sentence to add more info and to clarify.]
 
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Trish said:
The team writing the Larun review are mostly based in Norway. I think we have discussed before whether they are subect to Norwegian FOI. I've forgotten the answer.
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I got the more recent emails (June 2019) between Cochrane and Norwegian Institute of Public Health via a FOI to NIPH. But I imagine they stopped correspondence after the agreement was made that they would publish the review.
 
Caroline Struthers said:
I got the more recent emails (June 2019) between Cochrane and Norwegian Institute of Public Health via a FOI to NIPH. But I imagine they stopped correspondence after the agreement was made that they would publish the review.
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I wonder whether there is more correspondence now about the republishing as a 2024 review, which presumably Larun had to agree to, as lead author.
 
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