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

The article seems to have a sceptical tone of pwME in it. But the fact they got quotes from Jonathan and Hilda (when she’s on our side) and no BPSers makes it a valuable article in my opinion.

 

The bit about not having an example to hand was in response to a quick afterthought email from the journalist asking why there was a problem if the review was not being cited. I could have found an example pretty easily but they didn't ask for any. I was not over impressed that the journalist was committed to getting a strong story - just a quick skim of opinion.

 

Yes it really felt like they were trying very hard to find something to insert scepticism to our side of the story. Hence, that comment and others.

 

Yes I thought so too. There were little jabs dotted throughout. Also shoddy of them to get comment from Cochrane and not from pwME who put up the petition, and have all the facts and personal experience.

 

Just noting that in an email bulletin today ("The Year Ahead"), ME Action made the following statement about the Cochrane problems:

Link: ME Action: The Year Ahead

 

RetractionWatch: Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

 

https://virology.ws/2025/01/24/tria...ew-is-hurting-patients-says-longtime-insider/

 

PETITION UPDATE

News from the IAG, and other good things

24 Jan 2025
Things have been happening!

And so we'll put our examination of Cochrane's second excuse for abandoning the replacement review process in the next update.

In this update, we cover a Retraction Watch article about the petition. Also, finally, news from the Independent Advisory Group that was set up to provide stakeholder input into the development of the replacement review and from its leader, Hilda Bastian. We'll keep things short because we think the best thing to do is to click on the links and read for yourself.



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."



The Independent Advisory Group's open letter to Cochrane

Also today, the Independent Advisory Group finally broke its long silence, criticising Cochrane in an open letter.

It said
"the IAG’s advice was rarely sought, and we were not given an opportunity to provide feedback about the cancellation of the update of the review. Through its Consumer Engagement and Involvement webpages, Cochrane professes its commitment to involving patients, carers, and other stakeholders in its research. Consumer involvement, it is stated, “is vital to Cochrane’s work” and is “a key part of the production of Cochrane evidence.” [7] Our experience, as members of a stakeholder IAG, stands in stark contrast to these statements, indicating a troubling disconnect between Cochrane’s stated commitment to consumer involvement and their actions towards consumers they chose to involve.

We express our dismay and concern at the rejection of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews. Instead, Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors. "



Hilda Bastian's blog
Hilda Bastian also published a long blog setting out her view of the long running saga of the Larun et al and its abandoned replacement:
When Journal, Scientific Society, and Community Values Clash

It is worth re-iterating that Hilda is a Cochrane insider, an Emeritus Member of Cochrane. She also notes that Cochrane has made much of its commitment to fostering “open and transparent communication and decision-making,” and “being open and responsive to criticism.” But, in practice, she acknowledges that it has fallen far short of those aims, ignoring valid complaints and building walls to separate itself from the people affected by their reviews. The Independent Advisory Group that Cochrane itself set up to be a shining example of stakeholder involvement hardly got a look in.

Hilda writes of Cochrane:

'It was a shock to see what they did in December'.
"After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.

It’s even more unacceptable for this particular patient community. As Yong has pointed out, “ME/CFS patients face extreme dismissal and disbelief” about their suffering, from many directions, and it hurts. ”Societal dismissal of this kind,” he said, “leads to scientific neglect.” Cochrane is compounding this."

**********
Now that the IAG has finally gone public, we call on those ME/CFS organisations with representatives in the IAG who previously felt they had to keep quiet to join this campaign. Please stand with the 79 ME/CFS and Long Covid organisations from around the world already supporting the call for the Larun et al review to be withdrawn from use.

We have called for the Larun et al review to be withdrawn on the basis of harms, a basis allowed in their withdrawal policy. At the very least, Cochrane should make it clear that the review must not be used for clinical decision-making, to stop the review causing harm, and they should reverse their decision to republish the review as if it were a new 2024 version.

Please keep sharing the petition link and looking for opportunities to help Cochrane understand that they are a long way from living up to their professed values of collaboration, relevance (with the right evidence at the right time), integrity (independence and transparency) and quality (maintaining rigour and trust).

 

A big thank you to those who worked so quickly to get this update out onto the petition page. The series of petition updates is an important record of this saga and hopefully they will be read by people looking into this issue.

And well done to Hilda Bastion and the IAG for speaking out so forcibly.

 

TG quote-posting Hilda's blog —

https://bsky.app/profile/trishgreenhalgh.bsky.social/post/3lgi34gh46c2r

 

From Hilda's blog :

I'm glad I read that. It isn't just the reviews involving ME/CFS that are affected by this lack of a signatory - it is deliberate practice for all criticism. The reasons for anonymising Cochrane's response to criticism sound absurd to me and I thought Cochrane was just picking on people with ME/CFS - but at least that turns out not to be true.

 

I am trying to remember to post the link to the petition page ( https://www.change.org/p/cochrane-withdraw-the-harmful-2019-2024-exercise-therapy-for-cfs-review ) every time I see a social media post referring to the Retraction Watch article and Hilda’s blog.

It had seemed the surge in signatures following Cochrane’s abandonment of the new review process had tailed off this week, but hopefully today we are seeing a further upturn in signatures.

 

There's a update email on the petition this morning. In addition to the IAG's letter they reference an article by Retraction Watch -



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."

The link doesn't work for me.

Anyway fantastic to see some activity from the IAG. (I've just woken up and haven't read the letter yet)

 

Link direct to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33189070

 

Is this question on harms what prompted L Larun out of the shadows after 10 years?

Timing is crucial. Why respond now especially after the abrupt re-dating of the existing review in December 2024?

So, it's time to be reminded of an extract from the response from NICE by Barry et al submitted Oct 2023 and published February 2024 to the above referenced Anomalies opinion piece

Maybe that's why she's talking about GRADE and not the question asked?

Re-dating the Cochrane review to 2024, when and how it did, looks like an attempt to usurp the relevance of the NICE Guideline.

Although, I could be completely wrong. Extraordinary behaviour.