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

FYI, the link doesn't work in the post or in the petition. Here's the working link:

https://absolutelymaybe.plos.org/20...cientific-society-and-community-values-clash/

 

From Hilda's blog at https://absolutelymaybe.plos.org/2025/01/24/when-journal-scientific-society-and-community-values-clash/

Did this recommendation by the IAG make it into any of Hilda's "monthly" updates in 2024?

 

Interesting to see this plainly, although here is only confirmation of what we already knew. Because it seems that this is all that happened. We basically saw most of what happened, it's just that Cochrane has behaved in completely unprofessional and deceitful ways the whole time.

For sure Cochrane looks absolutely awful here. But I can't say that the IAG looks much better. They basically took it all and helped Cochrane cover, acted like waiters at some royal function, invisible, not even a whisper. Cochrane basically acted ostentatiously obstructionist and in clear violations to many of their own rules and principles. But of course such rules are entirely self-enforced, aka not at all.

If it was at Cochrane's instructions that the IAG keep silent about everything, then it completely exposes all of their boasts about transparency and consumer engagement as a bunch of lies. But the IAG should have denounced things far sooner. No matter how it's put out here, it was simply not acceptable that it wasn't until 2024 that the path forward got cleared after years of secret scheming. Because the way they did things basically screamed at all our faces that it would end up like this, that they were completely deceitful about it all, and have revealed themselves as unfit for any purpose relating to clinical decision-making.

I am especially sick of hearing the excuse of the pandemic when it actually increased urgency by 10x. This only makes further mockery of their judgment and how they seem to exist only as a private club of unaccountable influencers exclusively focused on themselves.

I appreciate Bastian's openness here, but it's far too little too late. Once Lucy has yanked the football away 10 times, it's Charlie Brown's fault for still going at it, only to fall on his butt yet again. A lot of people have died since then because of it. A lot of people have permanently deteriorated because of it. Long Covid progress has been stifled to extinction because of bullshit like this.

Also frustratingly, yet again we have been right all along. And it changes nothing. This is appalling. What a rotten system they operate for their self-benefit. Also especially annoying is that we warned Bastian about all of this, and it made her go away in frustration because it put too much blame on Cochrane, even though it turns out it wasn't even enough. We weren't just right about the facts, we were right about the behavior surrounding how the facts came about.

 

Yes

 

In this case though it is transparently (for a change) hypocritical coming from "the office of the editor-in-chief". Which means the editor-in-chief, but with extra cowardice. This manages to capture both the indifferent of anonymously signing something, with signing something based on authority, the editor-in-chief, while pooing off any responsibility involved in it.

Weak. Cowardly. Pathetic.

 

100% this

 

I wonder what influence their member structure and funders have. Their researchers also become members. And are involved in decision making.

Their funders are a lot of governmental organizations who have an interest in keeping exercise as treatment.

In my view not a healthy organizational structure to be able to independently review research.

Too much influences not in the best interest of patients.

With the Independent Advisory Group (IAG) they tried to include patients, but that clearly failed.

 

I think we are taught to implicitly trust institutions our whole life, especially those that have the guise of “science” and “government”.

I am not really suprised by how this played out, and I think everyone who predicted it very much has a right to say “I told you so” to the IAG, who were infact used as a cover for postponings and delays and ultimately a cancellation after which they were thrown away because their usefulness had passed.

I’m not suprised that most on the IAG initially trusted Cochrane though. Our entire socialisation and participation in society as a “normal person” relies on trusting institutions. We have so many things we take for granted as fact because we were told them. If we started questioning everything an institution told us our reality would crumble.

Learning how f*cked up and biased institutions are in relation to ME/CFS takes lots of time, and personal suffering for most pwME. And this is people who have been completely abandoned and metaphorically (and sometimes literally) left to starve by these institutions. That’s why I’m really not surpised the vast majority of ME/CfS researchers, even those on the “right side”, don’t really understand or seem to care as much. And why I’m not suprised by Bastian’s behaviour.

I am very grateful though that she was willing to strongly criticise cochrane. I also agree that it is too little too late, but it’s better than I could have imagined coming from her just two months ago when it felt like she was in kahoots with cochrane and wanted the review to stay.

 

Pretty much none, I suspect. I think the 'influence' remains locked in to a group of no more than a dozen people, many of whose names appear on the 'Anomalies' paper. This is what Cochrane was set up for - to protect low tech therapies that could be managed from primary care, even if they don't work.

 

Yes. It always fascinated/appalled me when I worked for them that most reviewers of treatments like homeopathy, acupuncture, CBT for just about anything never really laid into the universally poor quality and often blatant conflicts of interest of those carrying out trials of these types of therapies. It was only when I found out about PACE, quite by chance, that I realised that that was the whole point of Cochrane

 

A very clear and useful exposition @Hutan. Thank you.

 

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