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

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 And was withdrawn in 2018 then reinstated dodgily with the start of this palaver

 

That's what I alluded to on twitter.

 

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.

 

Wait, what? This has already been withdrawn once. Can someone point me to the info on why, when etc?

 

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'.

 

Don't worry, I've now fully read Hilda Bastian's blog. I have what I needed. These advocates, to quote Hilda

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.

 

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/

 

So we know that the project was successfully blocked by internal vested interests.
It is time somebody high up resigned.

Gill Leng was on the governing board of Cochrane during this period. Why did she not blow the whistle?

 

Am I right in thinking that FOI is not applicable for Cochrane? Because they are not a governmental organization?

 

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.

 

Petition signatures at time of posting: 14,493

 

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

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.

 

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.]

 

Yes, and he together with the all the international signatories to the 'anomalies' opinion piece in July 2023 form a thread.

 

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.