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

It is impressive that Mary Dimmock and Todd Davenport are being so outspoken and are still seeking to progress the matter by inviting comments on the draft protocol.

Should we have a separate thread on the draft protocol and the survey to collect comments on it.

 

Brilliant

it’s the first time I think that I’ve seen more info on what the draft protocol mentioned in feb 2023

others outside me/cfs shouldn’t think this is a revelation because I assume these (eg having both objective and subjective measures if outcomes) are just basics for most areas to the point you’d assume they were norms. Hence why they branded cfs mental health to slide it under the radar.

anyway I can’t help but think that para on what the new protocol would finally have brought in re:basic standards is /was the sticking point

and when combined with this new protocol defining what standards would be applied ‘what they didn’t want it replaced with’

combined with the mass and names of those who publically launched a campaign in 2018 when the old one was withdrawn temporarily (as it should have been) being put out there as a reminder of who doesn’t want it taken down eg the tweet from claire Gerada that is on an s4me thread somewhere

then in the middle is the FOi email trail where the independent arbiters suggestion weee ignored re what could be claimed as the effect when it was published in 2019.

then of course, in the middle of all this, similar contacts with faux outrage (faux in it being fir either the sake of patients or science) in the FOI of emails/text sent to those who were running the new Nice guideline - as some of these felt like a continuation of the same ie the timeline feels continuous to me

 

Yes I think having it clearly titled as such would be worthwhile

important it is easily found by external search?

 

I have not yet read everything, but it does feel that the psycho behavioural intervention lobby decided that any new exercise review would undermine their already feeble evidence base so put all their effort into blocking any progress, eventually resulting in the Cochrane Board caving in with the December announcement and their deceptive redating of Larun et al.

Certainly these two letters reinforce the likelihood that this was a decision based on internal Cochrane politics with perhaps some additional external off the books lobbying, without any appraisal of scientific evidence.

 

For ease of access, the direct links to the open letters are

Letter to Cochrane:

Letter to the Community:

 

I'm confused about that. What right does Cochrane have to work they had nothing to do with producing? Yeah, the editorial back-and-forth, or ooooh a "search stragegy", which I'm sure is soooo complicated, whatever it was entirely to please their agenda and it's not as if it added any quality to it.

The authors did all the work, and Cochrane reneged on their end, thus breaking any agreement entered by any party. I don't see how that still leaves them any ownership, and it's not as if they have a legal claim for anything, certainly can't enforce squat. When you break a contract, especially on malicious grounds, you aren't entitled to a damn thing out of that agreement. And they even broke it unilaterally and without a valid reason.

I hope the authors ignore this because it truly has all the legal weight of a squeaky fart.

I also can't understand the need for this much secrecy. We were told absolutely nothing about what was going on during all this time, and there was clearly no reason for it. It all seems completely self-serving and corrupt from Cochrane, and that certainly fits their usual pattern.

 

Which is truly absurd since no one produces more content disproving their junk than themselves. Lately there have been many studies and reviews from psychosomatic ideologues basically reporting sad trombone noises about most of their pet models being found invalid, their treatments useless and their reputation with patients completely rotten. And none of it makes any difference, because they operate in a completely insulated bubble of fantasy within systems that are unable to show the tiniest bit of spine.

Hell, many of them produce 'systematic' reviews, which are actually very selective and therefore not systematic at all, that exclude most of the studies on account of being total garbage. Even one of their preferred positive spins, cancer-related fatigue, has had reviews published lately showing how it's a complete bust, but even generally speaking for the most generic definitions of 'functional' illnesses with the most generic loose attempts at treatments, they are all having to admit that it's a bust, they just get around it by just sticking with the script about how it's all promising and they know the money won't stop being thrown their way any time soon. Basically they go on only because the systems that enable them are broken and corrupt, unwilling and unable to admit they have been making disastrous mistakes for decades.