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

[Hutan]

I was able to skim a little bit the part in this thread about directness/indirectness in PACE.

Thanks for the effort it took you to make that post @JemPD. I think it expressed things very well.

@Medfeb, maybe JemPD's post is helpful?

 

[Jonathan Edwards]

(is this right Jonathan?)

Spot on.

 

[Hutan]

Gosh, the petition is up to 14,977. Looks like we will crack 15,000 before February has hardly begun.

 

[Science For ME]

PETITION UPDATE

More publicity Cochrane won't want to see
1 Feb 2025

The public response to Cochrane's 17th December announcement of the abandonment of the replacement review process has been building and all of it has been critical. We share some of the responses here, with more to follow in the next update. We also examine the second reason given by Cochrane for abandoning the new review process.

1. British Medical Journal article
Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy 27 January 2025 (paywalled)
Jacqui Wise has brought the issue of the Larun et al review to the attention of the readers of the British Medical Journal in a very good overview of recent events. She concludes by mentioning this petition:
"A petition calling for the review to be withdrawn, which was started in September 2023 and updated in December 2024 after the recent controversy, has so far attracted more than 14 000 signatures.5 The petition, posted on behalf of the international Science for ME forum, said that people with ME/CFS were being harmed by inaccurate clinical advice resulting from a flawed Cochrane review."

2. George Monbiot
Renowned journalist George Monbiot, commenting on Cochrane's actions posted on Bluesky on 30 January 2025:
"This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them.

The result of their concerted reputation-washing is that patients continue to be abused and subjected to treatments that make their condition worse. However grand and eminent scientists may be, their reputations must always take second place to the evidence. They need to admit they got it wrong."

George wrote an article last year, ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal'.



3. Cochrane's other reason for abandoning the replacement review
In a previous update, we examined the validity of one of Cochrane's reasons for abandoning the replacement review, "a lack of resources". Here we look at the other excuse: "insufficient new research in the field".

New research isn't needed to justify a new review
When Cochrane's Editor-in-Chief, Karla Soares-Weisser, committed to a replacement review in 2019, its production did not depend on further research being done. Cochrane recognised then that there were already compelling reasons for the Larun et al review to be replaced. Soares-Weiser noted that the review was
"still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s". She noted that Cochrane had decided that "a new approach to the publication of evidence in this area is needed" for this "globally important health topic".

Five years later, years that include a pandemic that is leaving very large numbers of people with post-Covid-19 ME/CFS, the topic that was globally important apparently now does not warrant any effort. Despite many people telling Cochrane of the harm the review is causing, Cochrane has, through their actions, told us that they do not believe us.

And there is new research
There has in fact been new research since the Larun et al review searched for studies in 2014, quite a lot of it, as well as accumulating evidence of harm.

For example, a graded exercise therapy and graded activity therapy study was done with people aged 13 to 18 years, the Magenta study. It was completed in 2019 and finally published in 2024. This study collected and published data on objective outcomes including activity monitoring using wearable technology. The study concluded that there was 'very limited improvement in either study group evident by the 6-month or 12-month assessment points'. There was no evidence of a clinically important increase in physical function or improved school attendance.

Some people have waved the Magenta study away, noting that the Larun et al review is only of adult studies and so studies of young people are irrelevant. This is nonsense. There is no reason to think that exercise therapy would be any more effective for people with ME/CFS aged over 19 years than for the younger people in this study.

The Magenta study documented objective and long term deterioration in activity levels and in the numbers of participants reporting school attendance. The hospital admission of one participant due to suicidal ideation was acknowledged to be possibly related to the exercise therapy. The Magenta study provides objective trial-quality corroboration of the reports of harm from other sources, such as surveys and the many testimonies provided by the signatories this petition.

The Larun et al review does not warn that its guidance is harmful if applied to children and young people. We know that the review is being used to support the application of exercise therapy to these people. For example, the Australian organisation of family doctors (RACGP) promotes the use of Graded Exercise Therapy for 'people with CFS/ME', not only adults, citing the Larun et al review.

Since 2014, there have also been many studies of Chinese exercise therapies (although these studies have the same serious trial design flaws as the European studies). For example there is a review of 13 trials of tai chi and qigong. It is odd for Cochrane, which claims global expertise in the identification of relevant studies, to have missed these.



4. Links from the last update
Apologies for the glitch with the links in the last update. Here are the correct links:

Retraction Watch's article about the petition:
Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome - 23 January 2025

The Independent Advisory Group for the replacement review's open letter - 24 January 2025

Hilda Bastian's blog about Cochrane's abandonment of a replacement review - 24 January 2025


5. Thank you
People from Anguilla, Indonesia, Moldova, Russia and Ukraine have added their names in the last few months, bringing the total number of countries with signatories to 85. Thank you all, including the 79 ME/CFS and Long Covid organisations, for continuing to follow and support this campaign. As we write this update, the number of people who have signed the petition is edging over 15,000!

If you would like to join the Science for ME forum community as we discuss the latest Cochrane-related events, if you have feedback, questions or ideas or if your organisation agrees that the Larun et al review should be withdrawn, you can find us at this link.

The work of the campaign is done by Science for ME volunteers. We have not sought and do not seek funds for the work. If you value this campaign, please tell others about it.

 

[SNT Gatchaman]

As we write this update, the number of people who have signed the petition is edging over 15,000!

Now 15002.

 

[Peter T]

Thank you to Committee et al for the latest petition update, as always very clear and concise.

It seems to me that the change.org petition page is getting harder to navigate, especially in relation to the updates. As I have said before our petition updates now make a very useful resort in relation both to Cochrane’s terrible conduct and to the issues around exercise and ME/CFS, so wondered if there was any way we could make this information more accessible and promote it more.

Certainly I feel our updates should be required reading for any journalist looking at the current Cochrane debacle. Though having said that I guess getting people to our read only petition thread here provides everything in chronological order, just how do we get the right people to read it? Would it be worth doing what MEAction have done and issue a press release?

 

[obeat]

Is it worth trying to get more publicity about MAGENTA trial results?

 

[Utsikt]

Is it worth trying to get more publicity about MAGENTA trial results?

Any suggestions on how to do that? And what’s the target group?

 

[Trish]

It seems to me that the change.org petition page is getting harder to navigate, especially in relation to the updates. As I have said before our petition updates now make a very useful resort in relation both to Cochrane’s terrible conduct and to the issues around exercise and ME/CFS, so wondered if there was any way we could make this information more accessible and promote it more.

All the updates and the letters between the S4ME committee and Cochrane are published in order on this thread:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review
I have also collected together all the items about the review since 2019 from the News in Brief onto a thread here:
Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond

If anyone wants to promote it, please do.

 

[ME/CFS Skeptic]

Reflecting a bit more on the useful German article.

I think this section is key - following the masks controversy where the editor had to make a public apology:

"According to people involved, it created a certain amount of conflict fatigue.

"A foreseeable, yet again fierce, further conflict over a new ME/CFS review did not seem very attractive. This attitude, the complaints from ME/CFS patients that had been piling up for a long time, plus the constant fire from Graded Exercise advocates who wanted to prevent a review update anyway - all of this combined apparently led to the decision to abandon the project."

Not sure if this reason given by Cochrane makes sense. If they wanted to avoid controversy, they would not have offended Hilda - one of their founders with a large influence.

Avoiding controversy would probably mean to take the middle ground, accept points from both sides and don't say much in the update. And if resource problems were an issue, they could have abandoned the update and added a note that the 2019 review is outdated. Then they would simply withdraw from the debate and people might be frustrated with them but nobody would likely be furious.

What happened now feels more like a pushback. For example, the editorial note saying that Cochrane stands by the 2019 version and the new publication version in 2024 although nothing has changed. Larun coming back to answer some questions. It feels like Cochrane has taken sides and thrown itself into a controversy rather than trying to avoid it.

I'm also sceptical about the influence of White, Sharpe and Wessely on the course of events. They would likely have tried to influence things since the editorial review by Tovey but were apparently unable to stop changes from being made in the 2019 amendement and the launch of the update project. Now Cochrane seems to contradict itself and come back to its steps so what has changed? I suspect it must be people with lots of influence and contacts within Cochrane.

 

[Trish]

It feels like Cochrane has taken sides and thrown itself into a controversy rather than trying to avoid it.

Absolutely that's what they have done. Avoiding controversy from their point of view is keeping their own senior people like Paul Garner, Paul Glasziou, and Simon Wessely happy.

As far as they are concerned, critical comments can be ignored and labelled as applying to a previous version, and complaints from patients can be dumped in the bin, as demonstrated with S4ME complaints.

So we fight on.

 

[rvallee]

I really like the part about the review of TCM exercises. It uses the same process and produces the same results, relying on the same Cochrane formula to get a fake positive result. Same as they usually do. It exposes how inadequate and inept it is, how completely arbitrary the conclusions are.

 

[rvallee]

Not sure if this reason given by Cochrane makes sense. If they wanted to avoid controversy, they would not have offended Hilda - one of their founders with a large influence.

Also very much worth pointing out that the conflict has been ongoing for a decade now. It's not new conflict at all. And obviously this doesn't end it. The premise here is completely childish, millions of sick people don't disappear no matter how strongly they glue their eyes shut. This is failing at object permanence.

The review was literally the resolution to the conflict. But Cochrane and the other ideologues can't accept that reality would rule against them, so they just shut it down, took their toys and went home, thus prolonging the misery and death they have promoted for years.

 

[Peter T]

Reflecting a bit more on the useful German article.

Not sure if this reason given by Cochrane makes sense. If they wanted to avoid controversy, they would not have offended Hilda - one of their founders with a large influence.

Avoiding controversy would probably mean to take the middle ground, accept points from both sides and don't say much in the update. And if resource problems were an issue, they could have abandoned the update and added a note that the 2019 review is outdated. Then they would simply withdraw from the debate and people might be frustrated with them but nobody would likely be furious.

What happened now feels more like a pushback. For example, the editorial note saying that Cochrane stands by the 2019 version and the new publication version in 2024 although nothing has changed. Larun coming back to answer some questions. It feels like Cochrane has taken sides and thrown itself into a controversy rather than trying to avoid it.

I'm also sceptical about the influence of White, Sharpe and Wessely on the course of events. They would likely have tried to influence things since the editorial review by Tovey but were apparently unable to stop changes from being made in the 2019 amendement and the launch of the update project. Now Cochrane seems to contradict itself and come back to its steps so what has changed? I suspect it must be people with lots of influence and contacts within Cochrane.

Assuming it is correct that the decision to abandon the new review process happened at the meeting of Cochrane’s Governing Board in Prague in early September, as pointed out above, this means that the Board intentionally withheld this information from the Writing Group and the IAG for three months, presumably knowing it would be a controversial decision.

Gillian Leng, as a board member, was presumably at that meeting. It is interesting that when at NICE she strenuously held out against the usual suspects’ (presumably including Wessely, Sharpe and White) sustained efforts to have the evidence edited and then failing that block the publication of the new ME/CFS guidelines. She must have understood the flaws in their arguments for promoting GET with this patient group. So she knew the incontrovertible scientific problems in the Larun et al exercise review. It is hard to imagine she did not share her knowledge with the rest of the board.

So it is highly unlikely that the Cochrane Board did not know that Larun et al 2019 was seriously flawed, even if they had not followed the controversy under Tovey, and though Wessely, Sharpe and White’s opposition would be an embarrassment, would they have sufficient clout to force Cochrane against their own best interests? However it may be that Garner and other Cochrane current insiders, some mentioned in this thread, would be more able to make life more difficult Cochrane. Presumably the Board, perhaps stating it as ‘avoiding controversy’, felt that the pro Larun et al insiders would be more of a problem going forward than people like us. It could be they assumed that the writing group and the IAG would just role over, certainly up to last December Hilda Bastion gave the impression she would do nothing publicly to embarrass Cochrane.

 

[Nightsong]

Assuming it is correct that the decision to abandon the new review process happened at the meeting of Cochrane’s Governing Board in Prague in early September,

In the original German:

Aus der Cochrane-Organisation erfuhr RiffReporter, dass die Entscheidung bei einem Treffen des Governing Boards, des höchsten Leitungsgremiums bei Cochrane gefallen sein soll, das vom 7.-9. September in Prag stattfand – es ist eines der wenigen Treffen, für die bisher kein Protokoll veröffentlicht ist. Für die unabhängige Beratergruppe gab es offenbart keine Information bis zu jener E-Mail vom 16. Dezember.

The first sentence implies that Cochrane informed the reporter of this.

Gillian Leng, as a board member, was presumably at that meeting. It is interesting that when at NICE she strenuously held out against the usual suspects’ (presumably including Wessely, Sharpe and White) sustained efforts to have the evidence edited and then failing that block the publication of the new ME/CFS guidelines. She must have understood the flaws in their arguments for promoting GET with this patient group. So she knew the incontrovertible scientific problems in the Larun et al exercise review. It is hard to imagine she did not share her knowledge with the rest of the board.

If she had a deep understanding of the nature of the serious methodological problems common in behavioural, alt-med & psychosomatic trials it is difficult to comprehend why NICE produced the chronic pain guideline that they did a mere 6 months before the ME/CFS guideline was finally released, with potentially useful pharmacological options ruled out & not only CBT but acupuncture, of all things, recommended, over many objections.

Do we know precisely when the draft protocol was submitted by the writing group to Cochrane? I'm wondering if that was the tipping point - perhaps Cochrane leadership expected them to produce a protocol that would result in a review that did not differ greatly from that of Larun, and the pushback kicked into high gear when it was realised that was not the case?

 

[Peter T]

Do we know precisely when the draft protocol was submitted by the writing group to Cochrane? I'm wondering if that was the tipping point

We were told some time ago that it was February 2023, so it was sat on for over eighteen months before the Cochrane Board decided to abandon the process.

Although, the IAG was not given sight of it, Hilda was assured by Cochrane that the process was still ongoing several times after then.

 

[ME/CFS Skeptic]

I thought the point of not wanting to retract Cochrane reviews was to keep reviewers happy and not offend them (so that researchers keep doing reviews for Cochrane).

But what they have done now with the IAG and new author team is arguably worse. They wasted their time and treated them with little respect. So that argument doesn't make much sense anymore either.

 

[Peter T]

I thought the point of not wanting to retract Cochrane reviews was to keep reviewers happy and not offend them (so that researchers keep doing reviews for Cochrane).

Though I support retraction of Larun et 2019 (now falsely dated 2024), I would understand if the argument against retraction was preserving a clear record of what happened, which would fit in with the idea of only adding a new editorial note saying it was out of date and no longer clinically applicable. However Cochrane have undermined this argument by obscuring the history of events by reissuing Larun et al (2019) as Larun et al (2024) when it was totally identical to the previous issue, with only the editorial note changing but then since changing the editorial a second time last month but leaving the review dated 2024.

I suspect we should also be asking why Cochrane only introduced a no retraction policy when the previous editor in chief had seemingly agreed to withdraw the previous edition of Larun et al in 2017?2018.

 

[Hutan]

The way Cochrane presents its reviews as advice has serious problems. Even good quality reviews will become outdated, so there needs to be a clear way of separating current reviews, that can be relied on for clinical decision-making, from the outdated reviews. An editorial note does not cut it.

If you go to their website and search for Cochrane reviews on CFS, you get the CBT review and the Chinese herbs one, as well as the exercise therapy one. I can't see a way to just find "live" reviews.


The Chinese Herbs review has been withdrawn - it has this note on the reasons for the withdrawal:

Supporting better health for those receiving care is central to Cochrane’s mission to promote evidence‐informed health decision‐making by producing high quality, relevant, accessible systematic reviews and other synthesized research evidence.

The Cochrane Common Mental Disorders Group is currently undertaking a strategic portfolio assessment of all existing and planned reviews and protocols, including those relating to Chronic Fatigue Syndrome (CFS). During the course of our portfolio assessment, we are aiming to ensure that the most up to date evidence is available in the Cochrane Library to inform decision‐making. This latest version of the review was published in 2009. The Cochrane Common Mental Disorders Group are therefore temporarily withdrawing this review, with the full support of the author team, to allow time to determine whether the evidence is up‐to‐date.

The editorial group responsible for this previously published document have withdrawn it from publication.

Weirdly, that review appears to have been published in 2018, presumably the time of the editorial note, even though the editorial note says that the review was published in 2009. I couldn't find a way to actually read the review. It is a seriously weird way to treat published papers. Even a retracted paper should be able to be accessed.

The CBT review is still available to read and the abstract is there. It has this Editorial Note:

This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision‐making. The author team is no longer available to maintain the review.

Their system is a mess. They seem to have got confused trying to be both a journal that publishes papers and a provider of endorsed medical guidance. I'm not an expert on clinical publishing, but, as far as I can see, they seem to be making a hash of both roles.

Reviews that are endorsed as current and suitable for clinical decision-making need to be in one place, and all the others need to be in an archive, but readable, somewhere else. And there needs to be better a system, a positive marker, rather than just an absence of an editorial note, to show on a review if it is endorsed as clinical guidance.

 

[rvallee]

Although, the IAG was not given sight of it, Hilda was assured by Cochrane that the process was still ongoing several times after then.

Things like this should always been taken into account considering anything Bastian says. It's not the only instance.

Either she also knew this was false, and therefore can't be trusted, or she didn't know anything and so doesn't know anymore than we do, but feels the need to provide false platitudes, so at best we have to take it with a big truck of salt.

Given that this is Cochrane, option #2 is more likely, that she was used, but it still means that we need independent verification of anything Cochrane says, because they are fine with lying to anyone about anything as long as they get off easy.