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

My understanding is

1. Tovey recognised the flaws and promised to withdraw it
2. Though this decision was not announced publicly the review authors and others started a campaign for it to be kept
3. Tovey backed down and agreed to allow the authors to submit an edited version
4. The authors submitted a first edit which Tovey rejected leading to disagreement and an independent arbitrator being called in
5. Soare-Weiser then in post agreed to publish an edited version that failed to take on board all the arbitrator’s recommendations
6. Soare-Weiser recognised the problems with the now 2019/2024 version so promised a completely new review with radically a new stakeholder/patient consultation process beging the process in early 2020

 

Yes, but Tovey had already identified it as substandard.

 

Thanks, Jonathan, that looks great.

Couple of minor suggestions sharpening up—disregard if they change any of the meaning, they're not intended to.

What it may not convey is why people inside and outside Cochrane should be so deeply shocked. The international healthcare community needs to be aware of the implications of Hilda Bastian's (2025) statement on her blog, Absolutely Maybe, given as the title of this letter.

rewriting ... rewrite ... substandard

As a review author

Chalmers dismissed my concerns, but it is now very clear they were well-founded.

Whoever was responsible for the decision to block the project needs to be named and shamed.

 

No, she didn't think it was substandard when she allowed it to be published in 2019. One of the IAG and I met with her in July 2019 and he begged her not to publish it. She told us it was too late and the deal was done. As we found out from correspondence obtained through FOI, the deal was done in June 2019 https://acrobat.adobe.com/id/urn:aaid:sc:EU:314a94ec-b56c-48fa-b8f8-890b87a960c6
The same month, days after we met with her, Cochrane changed its withdrawal policy so no Cochrane reviews have ever been withdrawn since.
She was even weaker than David Tovey on this, and that is saying something. She totally caved to pressure and has refused to engage with anyone on it. She needs to resign.

 

I think adding a year to that sentence could help with regard to clarity?

"In [year] I had sight of another version..."

 

She's a psychiatrist. She will know Paul Garner very well. She's co-authored stuff with him eg https://www.bmj.com/content/354/bmj.i3507

 

There's a guy called Andy Oxman, well known in Cochrane, who was at the NIPH at the time, who is also very close with Iain Chalmers. Chalmers is famously hostile to people with ME. He turned very frosty with me in 2019 when he realised I was an ally! Anyway, Oxman was the one that suggested Gordon Guyatt as an arbitrator allowing the ridiculous torturing of the text to be able to say that exercise probably helps with fatigue. Although GG said they should clarify it doesn't have an important effect, the authors chose to ignore him

 

anyone has the text of guyatts reply?

 

Think the important-effect comment was from this PDF of FOI'd correspondence:

 

Details should remain on point, but would it be worth mentioning that a similar thing happened with the NICE guideline? As a pattern of behavior, one that is especially appalling given that the same ideologues have for years alleged, implied and even stated outright that we were not only doing that, but very successful at it.

Personally I think that patterns of bad behavior are very important. Especially one coming from people who accuse others, who obviously aren't doing the same, which is basically textbook DARVO.

 

Would Andy Oxman and Sir Iain Chalmers’ employers offer potential channels for FOI requests on this issue, via the Norwegian Institute of Public Health and via Centre for Evidence-Based Medicine in the UK respectively? (alternatively for Sir Iain Chalmers there is the Swiss funded James Lind Library).

Interestingly the names cropping up now in relation to Cochrane go beyond the usual suspects more directly involved with ME/CFS, perhaps suggesting that those involved are seeking to protect the methodology of unblinded trials relying on subjective outcome measures as much as wanting to use exercise based intervention with people with ME/CFS and Long Covid.

[added to second paragraph]

 

Loving the car window point. I’m being childish now in admitting it gave me fond memories of The Inbetweeners famous habit of shouting a certain nick name out of car windows at people waiting for a bus. But variations on that wouldn’t get published

agree strongly on the point that it needs to be made very clear who these people are and what they are supporting

I find it grammatically interesting that such people given what they’ve clearly been up to solidly over the space of time since 2017 ish onwards got called ‘advocates of an intervention’ when advocacy is normally ‘for’ the animate

and yet the same journals have been happy to publish terms like ‘activist’ for people who pointed out glaring errors that caused harm , time after time as each of these got proven. These are the very definition of lobbyists are they not if going by the behaviour /actions that define that term?

the least we can do is make the conflict of interest clear ie what are they ‘pro’ (whether it shells or harms patients or not)? As that seems at least part of the driver (I’m sadly starting to worry some see it ‘upsetting patients’ at least, potentially the other harm aspects, not as a disbenefit).

at the end of a day this is business for these people not what others would expect in medicine. These same people aren’t there for the long haul and good if treating either the illness or the patient properly whatever that may be, but are supply-led

so she’s right on the term interventions - but they sure don’t have any broad taste on what they mean by that . It’s an old and tired variation on the same narrow theme they’ve used to block all the normal angles of enquiry for treatment or management advice etc

so yes the name could be more ‘on the nose’ to what it is they are pushing and the word advocate for treatment that is harming patients seems very at odds