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

dave30th said:
this seems like sophistry or just semantics to me. You don't need to use the phrase "We recommend" in a sentence for a positive assessment of an intervention to be considered a recommendation. The review "recommends" exercise therapy in the common-sense meaning of the word, which is understandable to all native speakers of English. ADD: Maybe "semanticism"? Is there such a word? Using semantics or linguistic hair-splitting to deny reality?
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Yes indeed

and it is just a distract from the actual question being asked tactic.

This is the excuse (why it happened) that comes after they should have corrected the date on the basis it was inappropriate/misleading with regard to why dates are on journals or reviews in the first place: the reflect when the work was done and how recent the material reviewed is

it is an old review from 2017, then labelled 2019 that only included pre-2015 papers and methods

that they’ve relabelled 2024

and know full well that misleads reader to think some amend or update would have taken place to make it worthy of a new date

to write back with tosh about ‘didn’t do it deliberately’ or ‘because it was convenient for us’ doesn’t make it any more appropriate or correct - so it should be corrected


You wouldn’t offer a reprint with a new issue number on it if it was a print version/book - because there is nothing new

and it isn’t a latest review - which is the material they won’t release of that latest protocol done by the writing group that they held onto for over a year before deciding to junk ‘the update’ to not release . So they haven’t attached any of the latest material even if what they did , nevermind mentioning new research that would/should be in any review since 2014/5 cut off this related one really only includes

I think being misleading trumps any of these distractions of supposed ‘why it happened’ in the real question of ‘what is justified/appropruate/needing to be met to accord such a date’
 
Also there are examples where Cochrane have amended editorial notes without altering the publication date, for example with this very review in January 2025. Indeed it may be that changing the date in such circumstances is the outlier not the norm for Cochrane.

What is it about the CFS Exercise review that requires Cochrane to alter its editorial practices? The extreme being when the previous editor in chief, Tovey, was planning to withdraw an early edition, Cochrane altered its policies to make it harder for a review to be withdrawn.
 
If you read part 1 of our complaint, it seems clear to me that Cochrane have broken their own rules about when to create a new citation.
Complaint 2025-1: Creation of a new citation and publication date as a result of attaching an editorial note to an unchanged review

The first part of the editorial note says:
"This Editorial Note is for the above article, published online on 2 October 2019 on the Cochrane Library (https://www.cochranelibrary.com/), and has been issued by the Publisher, John Wiley & Sons Ltd, in agreement with the Cochrane Collaboration." [2]

We understand this to mean that the publisher agreed that the note be attached to the 2019 version of the Review, that is version 8. They have not done so. There is no indication in the editorial note that the publisher agreed to republish the Review as a new version with a new publication date and version number, and with the only change being to add the editorial note.

Quoting from Cochrane's policy on editorial notes:

"Specifications for publishing and display
Editorial notes are published as part of a standard publication workflow. To add an Editorial note to a published review – making no other changes to the review – use the 'Amended' What's new event (no new citation)." [3]

Therefore Cochrane has failed to follow its own policy by republishing the 2019 version 8 of the Review as a new 2024 version 9, creating a new citation, instead of attaching the editorial note to version 8 and leaving the citation unchanged. Further, it has failed to follow the agreement with the publisher that the note is to be attached to the 2019 version.

The only reasons we could find in Cochrane's editorial policy for creating a new version with a new date and a new citation, were the creation of an updated review, with all the requirements of an up to date literature search and up to date methodology, as we detail below in complaint 4A, the withdrawal of a review, or the creation of an update following a withdrawal. Clearly none of these applies in this case. [4]

The effect of the 2024 date in the new citation is to suggest to readers that the Review represents the state of knowledge in 2024, when in fact the search for studies to be included was carried out in 2014 and Cochrane has acknowledged that review methodology has improved since the work on the review was done.

Cochrane's response:

"Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review.

This decision does not breach our editorial policy but uses operational discretion in applying the publication guidance regarding editorial notes. Neither the editorial note, nor the decision to publish it with a new citation, indicates that the 2019 version of the review has been updated in any way."

They say they used "operational discretion in applying the publication guidance regarding editorial notes". But the bit I quoted is from editorial policy, not editorial guidance. As far as I can see they have breached editorial policy.
The policy says:
"To add an Editorial note to a published review – making no other changes to the review – use the 'Amended' What's new event (no new citation)."

The other point we made in that section was that the editorial note says it was agreed with the publisher to be attached to the 2019 version of the review. They haven't done that, they have attached it to the 2024 version.

Trying to get my head around how they have twisted to justify the new citation. They have played a trick by republishing the review with a new citation, and adding the editorial note to that one. So rather than breaking their policy by creating a new citation on the basis of adding an editorial note, which would be against their policy, they have created the new citation for no good reason, and added the editorial note to it. The editorial note does not appear in the list of amendments to either the 2019 version or the 2024 version. If you can make sense of that twisted reasoning, I'm a banana.
 
Something different:

On the Retraction Watch article on the Cochrane review, I noticed this comment:
M. Warshaw
In my response above, I should have added that I’m a biostatistician with decades of experience doing medical research including clinical trials. My comments on the poor quality of the study is not due to dogmatism, but due to violation of accepted research standards. Once a study has a protocol in place defining the endpoints, it is not acceptable to change them. It is especially not acceptable to change them so that a participant who gets worse over the course of the study meets the new definition of remission. I read the study protocol and resulting paper years ago and was appalled that it had passed peer review at a prominent journal.
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I wonder if this is
Meredith Warshaw
Center for Biostatistics in AIDS Research, Harvard School of Public Health
‪Meredith Warshaw‬ - ‪Google Scholar‬
 
ME/CFS Skeptic said:
On the Retraction Watch article on the Cochrane review, I noticed this comment:
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This is her previous comment:

Cochrane has forfeited all credibility. I read the the major study out of England of graded exercise therapy and it was appallingly bad. Among other things, the investigators changed their definition of remission from what was specified in the protocol in such a way that people could do worse after treatment yet meet the benchmark score for remission. Reviewers should never have approved their papers for publication, and Cochrane’s own reviewers should have recognized that the shoddy quality of the work meant it shouldn’t be included in any reviews or meta-analyses.
 
Utsikt said:
I found this based on her LinkedIn, she has done some work in psychiatry and special needs education before getting into HIV/AIDS. She might be sympathetic to ME/CFS?
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wow, I went to high school with Meredith but haven't seen her in years. I sent her the PACE trial when I was first working on it to get her input, and she's definitely sympathetic.
 
Trish said:
I'm not surprised. They have superficially gone along with the NICE guideline. Note that they say we "find overexertion to be detrimental" in this statement, yet in their position paper published in 2020 and updated in 2022 after the NICE guideline was published they say:



https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf

And their representative on the Cochrane IAG, Peter Gladwell, supports pacing up, as seen in his materials shared via AfME.

BACME speak with forked tongues. They want to be seen to be on our side but at the same time want to maintain their jobs running rehab clinics with CBT and watered down GET.
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I was thinking this - that it doesn’t mean they think the methodology was a problem

and their latest stuff has simply rebranded with the same old assumptions underlying things

but I can see why they’d want that rebrand included

It’s not the same as hearing them talk about seeing the light on method and information issues , and indeed on respect when pwme submit proper feedback and it being heard as intended etc

I think if we started seeing proper changes along those lines I’d feel it was more about hearing the issue with harm and outcomes and wanting to ‘get things’ better

I am interested however in it seeming the approach of the IAG might have been to agree a message they could all cooerdinate on?
 
bobbler said:
I was thinking this - that it doesn’t mean they think the methodology was a problem

and their latest stuff has simply rebranded with the same old assumptions underlying things

but I can see why they’d want that rebrand included

It’s not the same as hearing them talk about seeing the light on method and information issues , and indeed on respect when pwme submit proper feedback and it being heard as intended etc

I think if we started seeing proper changes along those lines I’d feel it was more about hearing the issue with harm and outcomes and wanting to ‘get things’ better

I am interested however in it seeming the approach of the IAG might have been to agree a message they could all cooerdinate on?
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I'm thinking they probably see some value in separating PEM vs non-PEM to preserve their industry and income streams. Even though it makes zero difference, which is actually the main takeaway. But by emphasizing that it's the problem, they keep the problem afloat with a distinction that no one can reliably identify.

So if the issue is only that PEM is different, they can continue 'duing' the same ritual crap while claiming that if it doesn't work, it's because of PEM and, my guess again, you need CBT, not GET. They simply insist that it works for 'fatigue'.

Or something like it. I can't ever see good intentions out of this industry. It's built to be parasitic and can't change. Its only valuable future is to fold and stop the grift, but these people made their career out of it so they can't let go. Especially so because their skills are entirely worthless anywhere else.
 
rvallee said:
I'm thinking they probably see some value in separating PEM vs non-PEM to preserve their industry and income streams. Even though it makes zero difference, which is actually the main takeaway. But by emphasizing that it's the problem, they keep the problem afloat with a distinction that no one can reliably identify.

So if the issue is only that PEM is different, they can continue 'duing' the same ritual crap while claiming that if it doesn't work, it's because of PEM and, my guess again, you need CBT, not GET. They simply insist that it works for 'fatigue'.

Or something like it. I can't ever see good intentions out of this industry. It's built to be parasitic and can't change. Its only valuable future is to fold and stop the grift, but these people made their career out of it so they can't let go. Especially so because their skills are entirely worthless anywhere else.
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Yes I’ve seen in other places that certain clinic’s have used their fatigue clinic model to eg get grants from cancer charities or maybe nhs to offer courses for fatigue post cancer

and then there is FND

and the PPS clinics

interesting question here about whether there is becoming a competitive market between these, and with those specific entities who chose not to change then say ‘it’s ok if harms me/cfs cos we just serve cfs/me’ etc?

ie how do BACME actually dovetail with those of that strategy?


plus of course it’s that feeling the long covid money /funding impacts things and there of course there has been a bit more differentiating by mentioning PEM - even though I’m not sure we are sure all those mentioning PEM in LC mean the same thing as we do by PEM

it would be interesting to break down the players in this market and if they all overlap with BACME?
 
As per @dave30th’s Facebook post, Mary Dimmock and Todd Davenport’s letter to Cochrane
To: Dr. Susan Phillips, Chair, Cochrane Governing Board

CC: Dr. Karla Soares-Weiser, Cochrane Editor in Chief
Dr. Hilda Bastian, IAG chair
Date: March 11, 2025

Subject: Cochrane’s decision to terminate the ME/CFS exercise review update

Dear Dr. Phillips,

We are ME/CFS consumer and researcher members of the ME/CFS exercise review author panel, convened by Cochrane to produce a full update to the Larun et al review of Exercise Therapy for Chronic Fatigue Syndrome (1,2). We are shocked by Cochrane’s unilateral decision in December 2024 to disband this initiative while continuing to leave the controversial Larun et al review in place (3,4). This creates a significant risk of harm to people with ME/CFS and also to those with Long COVID who experience post-exertional malaise (PEM), the adverse response to even small amounts of exertion that is the hallmark of ME/CFS.

In its 2019 announcement of this initiative, Cochrane acknowledged that even with the changes done in the 2019 update to address concerns with the methods and evidence, that review didn’t “resolve all the ongoing questions” and that a “new approach” was needed (1). Cochrane committed to a full review using a new author panel and an Independent Advisory Group (IAG), both of which included people with ME/CFS lived experience. Cochrane stated it expected this approach would improve the review.

Between October 2020 and February 2023, the author panel drafted four successive versions of the new protocol, each of which was submitted to Cochrane Central Editorial Service for their review and revised based on that feedback. The fourth and final version was submitted to Cochrane Central Editorial Service in February 2023 with the understanding that Cochrane would submit this for peer and IAG review and for public consultation.

As required by the project’s remit, the February 2023 draft protocol addressed the concerns and issues documented by the IAG and acknowledged by Cochrane in its 2019 announcement. For instance, the draft protocol specified both objective and subjective outcomes, specified an outcome to evaluate harms associated with PEM, required evaluation of the long term effects, called for separately evaluating studies that required PEM from those that did not, and required sensitivity and subgroup analyses to detect high levels of bias in any domain and evaluate the impact of outcome switching.

In its decision to disband this initiative, Cochrane cited a lack of resources and insufficient new research. But the original decision to undertake this review was never predicated solely on the emergence of new studies. Further, Cochrane never raised the concern about lack of resources with the author panel; in fact, Cochrane’s Central Editorial Service was actively involved for two years in shaping the successive drafts.

The most disturbing aspect of Cochrane’s decision to abandon the planned update is the parallel decision to leave the current Larun et al review in place and re-endorse it (4). As the IAG documented and as Cochrane’s own statements and actions acknowledge, Larun et al has serious methodological deficiencies in assessing the efficacy and safety of exercise in ME/CFS. This includes the review’s failure to adequately address PEM and the harms that can result from exercise in people with ME/CFS and those with Long COVID who experience PEM and develop ME/CFS.

This failure creates a significant risk of harm from inappropriate clinical recommendations. This risk is compounded by Cochrane’s decision to change the date of Larun et al from October 2019 to December 2024, despite the only difference between the two versions being an editorial note about the cancellation of the update (2,4). This misleadingly suggests to the public that Larun et al is a carefully updated work. However, this simple date change does not address the significant methodological concerns with the previous review. Neither the new publication date nor the included editorial note were based on a formal, documented, and repeatable search of the scientific literature, consistent with Cochrane best practices.

We understand that Cochrane revised its withdrawal policy in 2019 and that being outdated is no longer sufficient reason to withdraw a review. We also understand that Cochrane has rejected calls from members of the ME/CFS community to withdraw Larun et al (5). But Cochrane’s withdrawal policy still provides for withdrawal when “following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects) (6).” Further, Cochrane’s Handbook for Systematic Reviews of Interventions calls for caution in evaluating adverse effects that, if followed, would have highlighted the risks of harm (7). The deficiencies in Larun et al, especially in its failure to require PEM in patient selection or adequately consider PEM as a significant adverse effect of exercise in ME/CFS, rises to the level of serious error. Under the circumstances, withdrawal is necessary to best protect people with ME/CFS from harm.
Accordingly, we call on Cochrane to immediately withdraw the Larun et al ME/CFS exercise review.
We look forward to your response.

Signed
Dr. Todd E. Davenport, Researcher author
Mary Dimmock, Consumer author

References
1. Cochrane announcement of the planned full update to the ME/CFS Exercise Review
a. Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane. October 2019 https://web.archive.org/.../publication-cochrane-review...
b. Also see Stakeholder engagement in high-profile reviews pilot. Cochrane. March 2020. Discusses the approach to be taken in the review, including the IAG and new author panel https://web.archive.org/.../stakeholder-engagement-high...
2. Larun et al. Exercise therapy for chronic fatigue syndrome. Cochrane. October 2019 https://www.cochranelibrary.com/.../14651858.../full
3. Update on ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane. December 16, 2024. https://www.cochrane.org/.../update-exercise-therapy...
4. Larun et al. Exercise therapy for chronic fatigue syndrome. Cochrane. December 19, 2024. https://www.cochranelibrary.com/.../14651858.../full
5. March 17, 2024 letter from Science for ME to Cochrane calling for the withdrawal of Larun et al review because of the risk of harms https://www.s4me.info/.../s4me-2023-open-letter.../page-2...
a. Cochrane’s response February 14, 2025 https://www.s4me.info/.../s4me-2023-open-letter.../page-3...
6. Cochrane Database of Systematic Reviews: editorial policies: Withdrawal of published articles. https://www.cochranelibrary.com/cdsr/editorial-policies...
7. Cochrane Handbook for Systematic Reviews of Interventions: Chapter 19: Adverse Effects. Version 6.5, 2024 https://training.cochrane.org/handbook/current/chapter-19
**********
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As per @dave30th’s Facebook post, Mary Dimmock and Todd Davenport’s letter to the ME/CFS community:

To: The ME/CFS Community

Subject: Cochrane ME/CFS Exercise Review
Date: March 11, 2025

We are writing this letter to the ME/CFS community as two of the original eight members of the author panel convened by Cochrane in 2020 to produce a full update of their review of Exercise Therapy for Chronic Fatigue Syndrome by Larun et al (1,2). When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment. We have also sent an open letter to Cochrane calling on them to withdraw the review by Larun et al (3).

As background, in October 2019, Cochrane committed to a full update of this review. They did this because of continued serious concerns, despite amendments made by the authors to the last update in 2019 (1, 2). To that end, Cochrane established an Independent Advisory Group (IAG) and a new author panel (4). Both groups included individuals with lived experience of ME/CFS; the author panel also included two ME/CFS clinician/researchers.

The author panel met regularly from October 2020 until February 2023. During that time, we analyzed the documentation of concerns with Larun et al provided by the IAG (5), considered the findings of UK’s NICE review of ME/CFS exercise studies, and drafted four successive draft protocols for review and feedback by Cochrane Central Editorial Services. We incorporated their feedback, which played a critical role in improving the draft protocol. The fourth and final version was submitted in February 2023, with the expectation that it would be distributed to peer reviewers and IAG members and then for public consultation (4). In May 2023, the Executive Director of Cochrane Central Editorial Services informed the authors by email that they were awaiting clarity on next steps in that process (6).

Cochrane did not communicate with the author panel again until December 16, 2024, when the Office of the Editor in Chief emailed all of us that the initiative had been disbanded. Cochrane’s brief explanation was that “producing a meaningful update of this review is not a priority based on insufficient new research in the field and the available organizational resources to oversee this work (7).” But Cochrane’s original decision to undertake this review was never predicated solely on the emergence of new studies; it was to address concerns with Larun et al (1, 4). The explanation about resources was also confusing as Cochrane Central Editorial Service had been actively involved for two years in shaping the successive drafts of the protocol. And a change in priority at Cochrane would be equally befuddling, given the dramatic increase in the prevalence of ME/CFS in the wake of the coronavirus pandemic (8).

When Cochrane Central Editorial Service informed the authors that they retained the rights to use the content of the withdrawn protocol elsewhere, they also noted that Cochrane retained the rights to the elements developed by Cochrane, such as the search strategy, as well as the right to publish a new Cochrane ME/CFS exercise review, using “potentially, an entirely new author team” (9). Cochrane did not provide further explanation on their future intent.

The most disturbing aspect of Cochrane’s decision to abandon the planned update is that it simultaneously decided to leave Larun et al in place (10,11,12). As the IAG had documented and as Cochrane’s own statements and actions had acknowledged, Larun et al has serious methodological deficiencies in how it assessed both the efficacy and safety of exercise in ME/CFS (1,4,5). This includes Larun et al’s failure to adequately address the harms associated with post-exertional malaise (PEM), an adverse reaction to exercise and other forms of exertion that is the hallmark of ME/CFS (13).

This failure creates a significant risk of harm for people with ME/CFS, including the millions who have developed ME/CFS following COVID (8). This risk of harm is compounded by Cochrane’s decision to revise the date of Larun et al from October 2019 (2) to December 2024 (14), despite the only change being the addition of an editorial note announcing the cancellation of the update. Many, if not most, readers will undoubtedly make the unwarranted assumption that the review itself has been substantially updated and that any criticisms raised in the posted comments relate to previous versions. This risk of harm can only be rectified by Cochrane fully withdrawing Larun et al, as we and others have requested (3,10).

As the remaining two authors, we are considering next steps. In the meantime, we are releasing the final version of the draft protocol submitted to Cochrane to provide transparency about its contents and to provide the opportunity for public consultation as originally promised (4).

Links to the final version of the draft protocol, to a survey for comments on the protocol, and an FAQ on both are provided below. Please provide your comments by May 15, 2025. We will review those comments and provide a summary.

If you have any questions, you can submit them to mecfsexercisereview@proton.me. We may not be able to reply directly to each individual email, but we will add the answers to the FAQ.

We recognize there are opportunities to improve this draft protocol. We look forward to your feedback.

Dr. Todd E. Davenport, Researcher author
Mary Dimmock, Consumer author

Links to the draft protocol, survey, and FAQs:
● The draft protocol: https://drive.google.com/.../1bJzQ7C6Gr2sCFQ37vZ0.../view...
● The survey to provide comments: https://pacific.qualtrics.com/jfe/form/SV_0wRPgjuYlVVZa6i
● FAQs on the draft protocol and survey: https://drive.google.com/.../1Njn0o98LMoU9nyJmd.../view...

References
1) Cochrane announcement regarding its plans for a full update of its review of Exercise Therapy for Chronic Fatigue Syndrome by Larun et al. October 2019. https://community.cochrane.org/.../publication-cochrane...
2) Larun et al. Exercise therapy for chronic fatigue syndrome. Cochrane. October 2019 https://www.cochranelibrary.com/.../14651858.../full
3) Davenport, T, Dimmock, M. Open letter to Cochrane. March 11, 2025. https://drive.google.com/.../12.../view...
4) Cochrane announcement on stakeholder engagement in the update to the ME/CFS exercise review. March 2020. Discusses the approach to be taken in the review, including the IAG and new author panel https://web.archive.org/.../stakeholder-engagement-high...
5) Bastian, Hilda. Cochrane Exercise and ME/CFS Review Update: May 2021. https://web.archive.org/.../stakeholder-engagement-high...
6) Email to the authors from Helen Wakeford, Executive Editor, Cochrane Central Editorial Service. May 26, 2023
7) Unsigned email to the authors from the Office of the Editor in Chief, December 16, 2024.
8) COVID-19 Infection Associated With Nearly Eightfold Increase in Chronic Fatigue Syndrome. University of Utah. January 14, 2025. https://healthcare.utah.edu/.../covid-19-infection...
9) Unsigned email to the authors from Cochrane Central Editorial Service, December 16, 2024
10) March 17, 2024 letter from Science for ME to Cochrane calling for withdrawal of Larun et al because of risk of harms https://www.s4me.info/.../s4me-2023-open-letter.../page-2...
a) Cochrane’s response, February 14, 2025 https://www.s4me.info/.../s4me-2023-open-letter.../page-3...
11) Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome. Retraction Watch. January 23, 2025. https://retractionwatch.com/.../thousands-demand.../
12) Rücker, M. ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network. January 30, 2025. https://www.riffreporter.de/.../mecfs-cochrane...
a) Cochrane told Rücker "Cochrane stands by its decision to have published this review in 2019" and that the decision was made at the Governing Board, the highest group in Cochrane in September 2024.
13) Vink M, Vink-Niese F. Graded exercise therapy does not restore the ability to work in ME/CFS – Rethinking of a Cochrane review. Mooney A, ed. WOR. 2020;66(2):283-308. doi:10.3233/WOR-203174 https://pubmed.ncbi.nlm.nih.gov/32568149/
14) Larun et al. Exercise therapy for chronic fatigue syndrome. Cochrane. December 2024 https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full
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added - sorry about the emojis, I am not sure where they came from. Have now deleted them and inserted correct references.
 
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