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

Caroline Struthers said:
All the correspondence to and from the IAG email address. cochrane.iag@gmail.com. I will try and find where she committed to this.
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My memory was that she said it would be archived at Cochrane at the end of the project. Since the project has been cancelled, it's possible Cochrane don't want to house anything to do with it.

I don't know how much is was used or what for, but my communications on it tended to be either sorting out moderation of my posts on her talkpage, or questions she wasn't able to answer. More recently we have used it for things neither of us wanted to be on the public talkpage. I'm not sure any of my correspondence there should be archived or made public.
 
Trish said:
My memory was that she said it would be archived at Cochrane at the end of the project. Since the project has been cancelled, it's possible Cochrane don't want to house anything to do with it.

I don't know how much is was used or what for, but my communications on it tended to be either sorting out moderation of my posts on her talkpage, or questions she wasn't able to answer. More recently we have used it for things neither of us wanted to be on the public talkpage. I'm not sure any of my correspondence there should be archived or made public.
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I sent lots of questions and points I wanted to be recorded, particularly in the beginning. As well as her responses. i was under the impression that anyone who wanted access to the archive could have access to it. And that report of all the criticisms which she promised but never delivered. And the long form explanation of why it was not possible to withdraw the review
 
Caroline Struthers said:
And that report of all the criticisms which she promised but never delivered. And the long form explanation of why it was not possible to withdraw the review
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I don't have the energy to dig out answers on the talkpage and her latest blog.
I have asked about both of these on the talkpage.

My memory is that the report of criticisms wasn't ever published or put out for public comment as intended because Cochrane people in charge stopped this happening with all their delays. I think she's said now she's considering what to do with it. I had suggested she publish it.

On the explanation of why she thinks the editors won't withdraw the Larun review, she kept promising on the talkpage to write something. She made it clear she both thinks the review should be withdrawn and understands why the editors refused to do so. She says now she deferred trying to explain why the editors won't withdraw it because she was trying to persuade the editors to make their reasons public, but failed to persuade them. I think she's considering whether to write something herself, but don't quote me on that.
 
Hutan said:
Another thing that we are concerned about is the acceptance that the review should not be withdrawn, and that a 'do not use' label would be enough. A number of people, and recently Trish in particular, have spent time and effort putting together arguments to show that the level of harm caused by the review is sufficient for Cochrane's standard for withdrawal to be met.
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@Hutan - Can you point me to the best place to read what Trish put together
Thanks in advance
 
Trish said:
To clarify, I knew because Hilda put it in one of her published updates that there had been a complaint that wanted the new review process stopped and took a year for Cochrane to decide on, during which the IAG were told to stop work, but the author group were allowed to continue.
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Do you happen to remember the rough date on this, @Trish
 
Medfeb said:
Do you happen to remember the rough date on this, @Trish
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I have made a thread that I've been updating of all the S4ME weekly news items on the review since 2019.
Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond

Here's a copy of the relevant item:

Week beginning 6th November 2023

Cochrane Exercise therapy for ME/CFS reviews. An update by Hilda Bastian on the now resumed process towards a new review has been published. It includes a list of reasons for the delay, including halting progress for over a year while many committees discussed a complaint from people wanting the 2019 to stay and the new review process to be cancelled.
Cochrane update | Thread
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The Cochrane updates by Hilda were removed by Cochrane from their webiite when the announced the cancellation of the new review process.

Hilda has provided a link to archived copies:
https://web.archive.org/web/2024041...eholder-engagement-high-profile-reviews-pilot

The relevant one, November 2023, includes this:

The reasons included the lengthy and confidential process following a detailed complaint that called for the process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process. The complaint also argued that too many of the people who were authors of the review or members of the IAG, including me, were too biased in favour of criticisms of the current Cochrane review.

Multiple committees within Cochrane’s organisation considered this complaint consecutively, which took around a year. The complaint was not upheld after thorough consideration by the Conflict of Interest Panel, a subgroup of the Editorial Board, and finally Cochrane’s Governing Board.
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BMJ article - "Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy":

https://www.bmj.com/content/bmj/388/bmj.r169.full.pdf
Bastian said that the Cochrane community felt “shocked” by how the issue had been handled. She said that Cochrane management sent an email about the cancellation only on 16 December and that this had no personal signatory. There was no consultation or time to respond before the decision was announced publicly.

She added that how Cochrane had informed people of the decision, just days before Christmas, showed disrespect to the patient community. “This was a low blow to a group of people, many of whom are really sick, to find this out in this way at this time of year,” she said. “It was cruel. I hope there will be serious soul searching at Cochrane over this.”
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News
Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy
BMJ 2025; 388 doi: https://doi.org/10.1136/bmj.r169 (Published 27 January 2025)Cite this as: BMJ 2025;388:r169


  1. Jacqui Wise

  1. Author affiliations
A decision to cancel a planned update of a Cochrane systematic review of exercise therapy for chronic fatigue syndrome has met with anger from a group advising the review and the patient community.

The decision has reignited calls for the review,1 which includes studies only up to May 2014, to be withdrawn for being outdated and misleading.

The review recommends exercise therapy to treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), concluding that this “probably has a positive effect on fatigue in adults compared to usual care or passive therapies.”

However, this treatment approach is controversial and has been criticised by patient groups who say that it can make symptoms worse. Guidelines from the National Institute for Health and Care Excellence, published in 2021, specifically advise against graded exercise therapy.2 Guidelines from the US Centers for Disease Control and Prevention also state that exercise therapy is not a cure for ME/CFS and that standard exercise recommendations for healthy people can be harmful for people with ME/CFS.3

The Cochrane systematic review was modified slightly by its authors in 2019 to place more emphasis on the limited applicability of the evidence to definitions of ME/CFS used in the included studies, the long term effects of exercise on symptoms of fatigue, and the limitations of evidence on harms that may occur.

But Cochrane’s editor in chief, Karla Soares-Weiser, said at the time that the amended review “is 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.” Soares-Weiser committed to a full update of the Cochrane review, “beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene.” She said that the advisory group would “help to embed a patient focused, contemporary perspective on the review question, methods, and findings.”

That advisory group, which included researchers and patients, was set up in 2020, and the project was supposed to take two years. But the covid pandemic hit, and Cochrane lost funding and was restructured, leading to lengthy delays.

On 19 December 2024 an editorial note attached to the review, issued by the publisher Wiley in agreement with the Cochrane Collaboration, said that “Cochrane is ceasing the production of a full update of this Cochrane review.”

A Cochrane spokesperson commented, “Cochrane maintains its decision to publish this review in 2019. As the editorial note makes clear, a pilot project to update the review was disbanded in December 2024. This was due to insufficient new research in the field and a lack of capacity to oversee the work required, which significantly exceeded the resources normally allocated to an individual review. We have no plans to revisit this decision.”

Dismay and concern
The independent advisory group has now written an open letter to Susan Phillips, chair of the Cochrane Governing Board,4 expressing “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 reissued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current.”

The letter says that Cochrane has not properly addressed criticisms of the review, subsequent evidence and developments in the field, or its outdated methodology.

Hilda Bastian, group lead of the independent advisory group, told The BMJ, “There are a whole range of fundamental weaknesses in the entire structure of the review. The methodology it uses is extremely old; around 20 years old.” She said that, for example, the review talked only about positive effects of exercise in patients with ME/CFS and made no mention of how to monitor adverse effects.

She said that people would be misled to think that this was a new systematic review because it was now dated 2024. “It has the appearance on the surface that it has been updated,” said Bastian.

A Cochrane spokesperson commented, “In July 2019 we changed our editorial policies to align with industry standards for academic journals. Before July 2019, Cochrane reviews were withdrawn if the review was superseded by another systematic review or where the review question was considered outdated and no longer relevant to current practice.

“Our withdrawal policy now aligns with journal retraction policies and COPE [Committee on Publication Ethics] best practice. COPE guidance states that retraction might be warranted if an article contains such seriously flawed or erroneous content or data that their findings and conclusions cannot be relied upon. Cochrane has assessed requests to withdraw the review in question, none of which meet the criteria for retraction.”

But Bastian, a meta-scientist and writer who was one of the founders of the Cochrane Collaboration, said that the review did not need to be retracted but should be “retired” and labelled as out of date.

Lack of consultation
Bastian said that the Cochrane community felt “shocked” by how the issue had been handled. She said that Cochrane management sent an email about the cancellation only on 16 December and that this had no personal signatory. There was no consultation or time to respond before the decision was announced publicly.

She added that how Cochrane had informed people of the decision, just days before Christmas, showed disrespect to the patient community. “This was a low blow to a group of people, many of whom are really sick, to find this out in this way at this time of year,” she said. “It was cruel. I hope there will be serious soul searching at Cochrane over this.”

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.

An update to the petition stated, “Sadly, we are not at all surprised by Cochrane’s reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.”

References
  1. ↵
    1. Larun L,
    2. Brurberg KG,
    3. Odgaard-Jensen J,
    4. Price JR
    . Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev2024;12:CD003200.doi:10.1002/14651858.CD003200.pub9. pmid:39697147
    CrossRefPubMedGoogle Scholar
  2. ↵
    National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE guideline NG206. 29 Oct 2021. https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs

  3. ↵
    US Centers for Disease Control and Prevention. Manage myalgic encephalomyelitis/chronic fatigue syndrome. 10 May 2024. https://www.cdc.gov/me-cfs/management/?CDC_AAref_Val=https://www.cdc.gov/me-cfs/treatment/index.html

  4. ↵
    Bastian H, Cheston K, Chu L, et al. Independent advisory group open letter to Cochrane. 24 Jan 2025. https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/

  5. ↵
    Candish M. Cochrane abandons the replacement review. Change.org. 19 Dec 2024. https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33119411
 
Jonathan Edwards said:
I used to think Cochrane reviews were fairly reliable but I also assumed that anyone who got involved in the practical side of Cochrane must be a bit of a nerd, addicted to dotting 'i's and crossing 't's in words they did not necessarily understand. Maybe that is why the founders of Cochrane were able to run an organisation that at times was garbage in garbage out - to suit their specific agenda.
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It follows the same common pattern of hearing experts talk about topics we aren't familiar with, and thinking the experts seem to know what they are talking about, but then they start discussing a topic we know intimately and we can immediately see they are full of shit, and have to extend this realization to the other topics.

Because although real experts will definitely know a lot of things we don't, meaning we can't dismiss what they say on that basis, they will not talk about things they don't understand, so they avoid this awkward situation. But most clinical psychology and all of psychosomatic ideology is basically nothing but this here.
 
I think it's a pretty good article in BMJ.

Jonathan Edwards said:
Where is the comment that there was a 'full on attempt to block the project from advocates of the treatment' or whatever?
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The bit at the end that quotes our petition update at least raises the issue of influence:

article said:
An update to the petition stated, “Sadly, we are not at all surprised by Cochrane’s reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.”
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