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

I would really like to see an investigative journalist poke into the Magenta study and get some FOIs done.

I think Crawley was running the study and leading clinical services for young people with ME/CFS. And then the study started in 2015 and finished in 2019, the data was there. I expect the preliminary results were all done by the end of 2019 - the data is of the sort where you can pretty much just stick it in Excel and get the results. The pandemic is not an adequate excuse for it taking 5 years to get published.

Crawley retired from medicine and possibly the university in September 2023. The Magenta paper was submitted for publishing in October 2023 and it was published in March 2024. Crawley was not the senior author.

So, you have Magenta providing the most damning account of GET and graded activity management that you could hope to see coming out of a study run by a high-profile psychosomatic proponent.

Who slowed down the production of the paper? Was it kept it in a drawer until after the 2021 NICE ME/CFS Guidelines were published? Did the NICE committee get access to preliminary findings?

Who got the paper over the line and published?

The reason I'm writing about this here is that all this was playing out as the Cochrane Larun et al saga rumbled on. The exercise therapy review was published and the decision was made that a new review was needed at around the same as Magenta finished up.

Did the publication of the Magenta study in March 2024 (or rumours about it earlier) make those protecting the Larun et al review realise that there was a high risk of a new review now not producing the story they wanted and that the process needed to be stopped at all costs? Yes, Magenta is a study of children and young people, but it still makes anecdotes and survey data reporting physical and emotional harm credible. And there are plenty of similar anecdotes from adults.

Some of the psychosomatic proponents might have been willing to have a protocol that separated people into two groups, with PEM and without PEM, with different recommendations for each. But, the Magenta study would have made that hard, because the criteria used did not require PEM, it was the 2007 NICE criteria, and the severity of the participants was only mild and moderate. And GET didn't work for them.

Come September 2024, and the Cochrane Board decides that the new review will not proceed. I find it hard to believe the Cochrane Board could be both aware of the Magenta paper and think that the Larun et al review is giving safe advice. I assume they just aren't that interested and were happy to be advised by Soares-Weisser and the psychosomatic proponents.

Maybe we need to be giving Cochrane staff and the Board copies of the Magenta paper.

 

Gosh. I'd say that MAGENTA has permanently wrecked any prospect of pediatric trials of exercise therapies in ME/CFS.

How fortunate that the wide sunlit plains of Long Covid and FND await.

 

We already referenced it in our harms letter to Cochrane in March 2024. They clearly ignored it along with all the other evidence we provided.

 

I keep coming back to the passage in Martin Rücker's excellent article where he reveals the decision making at Cochrane that led to cancellation of the new review, and sacking of the IAG and writng group. The real reason, assuming it's correct is so shocking I focused on it in the weekly news item, thus:

So it all boils down to the couldn't be bothered. Their own lack of professionalism to see a difficult process through and stand up to bullies ruled.

Note the dates, 7-9 September 2024.

Coincidentally after a few months silence on Hilda's talkpage, I posted this on 12th September 2024:

Spoiler: My plea for action and accusation of influential interference in the process

trishrhymes
September 12, 2024 at 2:06 am


Dear Hilda,

I don’t know whether the following is within your Talk page rules, I accept that it’s up to you whether to publish it. Your page, your rules. I hope you will see that what I am saying here needs to be said, and said publicly.

_____________

I don’t wish to apportion blame to named individuals, since I have no knowledge of where blame lies, though clearly the editor-in-chief bears some responsibility.

I don’t want to hear more excuses about Covid, or funding cuts and reorganisation, or other priorities, I don’t want more flannel from Cochrane about new and better complaints procedures, I don’t want any more letters from Cochrane that don’t address any of our questions, I don’t want more assurances from you that you are making ‘steady progress’.

Cochrane has shown, with its actions and inactions where its priorities lie, and it’s crystal clear its priorities do not lie with scientific evidence, or the health of millions of people.

Cochrane’s priorities clearly lie with propping up failed paradigms favoured by their friends. They have known since Tom Kindlon’s publication on harms in 2010 that GET should not be recommended for ME/CFS, they have known since Kindlon and Robert Courtney pointed out flaws in the research that made it unsound that GET is not clinically useful.

They have known since Michiel Tack’s detailed analysis published on the Cochrane website in 2020 that the 2019 Larun paper should never have been published, and should be withdrawn.

The picture coming from Cochrane is of amateurish incompetence and lack of scientific understanding.

We at S4ME have tried, for over a year, and others have been trying for much longer, to make Cochrane take the problems with the Larun review seriously, supported by over 11 thousand petition signatories and over 70 organisations. People with ME/CFS and many clinicians and scientists agree that the Larun review causes harm and should be withdrawn. Cochrane editors have been given links to peer reviewed papers on harms, and large survey data, as well as some harrowing examples of harms.

Not once, in any of our correspondence with Cochrane, have they even acknowledged that they need to take harms evidence seriously, or indeed take any notice of it at all.

Cochrane is a disgrace, shaming its charitiable status, and apparently so tied in knots by its administrative processes and procedures that the editors can’t see the wood for the trees. The only alternative to that conclusion is that they have no intention of putting matters right, being in the pockets of proponents of exercise therapy, regardless of evidence.

There is no reason to keep the Larun 2019 review currently published with Cochrane’s name. Nobody with ME/CFS wants it, it helps nobody, and it is being used to perpetuate harm to who knows how many people.

I lie in bed today feeling angry and helpless, distressed beyond measure that we are so disregarded, treated as trash, unworthy of anyone’s efforts to set things right.

I don’t want your sympathy, Hilda, I want action, and I don’t mean another ‘monthly report’ telling us you are making progress in this or that small way.

I want you to contact the most senior people at Cochrane and tell them in no uncertain terms that this charade has to stop. They must withdraw the Larun review, and make a public and unreserved apology for the harm it has caused for years. And they must do so by October 2nd 2024, 5 years after they promised a new review in two years.

Will you act now? Please?

Trish Davis.

My comment sat there awaiting moderation, visible only to me and Hilda, for over 3 months, until after the announcement from Cochrane, when Hilda allowed my post and responded:

Hilda Bastian
December 18, 2024 at 5:23 pm
Sorry this sat here so long: I just didn’t know how to respond, and posting it without responding was also problematic.

I know it doesn’t help, as efforts haven’t been successful, but a lot of effort has been (and continues to be) put into this.
____________________

Other posts submitted on the talkpage in the silent 3 month by me and others were also suddenly released for public view by Hilda on 18th December.
________________

The only conclusion I can draw from this complete silence from Hilda from the date of the board's decision, is that she knew about it, but was forced to keep silent by an NDA, or by knowing if she broke the news before Cochrane did, it would make her persona non grata at Cochrane and cut off any hope she had of influencing them.

I hate feeling so helpless. My way of coping is to go on drafting and submitting complaints and comments to the Cochrane system where they will doubtless accumulate in a black hole.