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

Presumably members of Cochrane are entitled to express scientific views, unless they are hiding conflicts of interest or acting in any underhand fashion. However it may be that exerting covert pressure through the Cochrane Board to block genuine scientific investigation and obscure bad analysis is more dubious.

 

I understand the point of view being expressed re criteria. I just disagree

 

Last year a major review of exercise studies for depression was published. It mostly showed a total bust, at best that the data are very unreliable, do not even come close to the overhyped claims of the last few decades. There is simply nothing reliable behind those claims, they were made out of nothing based on vibes and feels.

And it changed nothing. It's still argued that exercise is great for depression, even pointing at the review that doesn't support this. There are still people, 'experts', going around 'teaching' about how to implement exercise programs for depression, how to do it safely, all the usual superficial all-style-no-substance we are used to.

The problem is far bigger than just us. This is the main methodology used by the likes of Cochrane and it created the same mess: overhyped claims made before any data were available continue to be made despite having been thoroughly debunked, just because the industry can't accept they have been systematically failing for decades.

I really don't know we we can affect that, but this is the scale of the problem. It's the entire clinical rehab and copy-paste-of-cheap-trials industries that have basically painted themselves in a corner, and having managed to work out a version of Zeno's paradox, painting ever-smaller lines closer to the corner, they have nowhere else to go. The lines are already too small to be visible, they just keep repainting the last line and no one in the industry cares. They paint lines, they don't ask questions.

They can't let this go. They won't. Because it's their whole fake-ass industry that would be exposed as a giant con. Because every single institution and organization tasked with avoiding garbage like this failed, enabled, even encouraged this to go on, cheering it the whole way.

 

And in addition to valid questions about MAGENTA, there's also the abandoned individual patient data review that was supposed to use PACE data, individualized instead of pooled. Guaranteed that they abandoned it because they started looking at the data, and found that there is no way they could spin this into a positive. If they could have, they absolutely would. They didn't drop it for a good reason.

A fully independent investigation here would find malfeasance on a grand scale. So the best they try to do is simply to bury the whole thing and wait for us to die while they go through another label-replacement cycle. I'm guessing they are probably ignorant, or at least apathetic enough, to actually believe that this is just a fad that will blow over one day, that our "small vocal minority of activists" are just some phase, or whatever. It's easy to maintain something like this when no one keeps accurate data anywhere.

 

Something that I don't actually know, despite having been a co-author of a Cochrane Review, is whether or not Cochrane Reviews actually cost Cochrane anything to get done. I don't remember my senior author getting funding from Cochrane but she may have done. My impression was that people proposed to Cochrane that they did a review and if Cochrane thought it was needed they said yes. Funding for salaries for reviewers came from elsewhere.

@Caroline Struthers might know much more.

If the people who agreed to do a new review were not being paid then it is unclear to me what justification Cochrane would have for now saying no thanks when the review was invited 5 years ago and nothing has made it less relevant.

 

At one point Hilda seemed to say that Cochrane had started paying her. That was after one of the various hiatuses presumably meaning she was not paid before then.

I can’t remember if it was late 2023 or not.