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

I came across this randomly. https://www.linkedin.com/feed/update/urn:li:activity:7288507835515101184/. It rings true for Cochrane although it is referring to arts organisations...the Trustees are well out of their depth (scuse the pun).

 

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

 

@Hutan - Can you point me to the best place to read what Trish put together
Thanks in advance

 

Do you happen to remember the rough date on this, @Trish

 

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

 

I got a beautiful carpet in Baku, Azerbaijan, that is very big, but probably not big enough.

 

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

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1. Jacqui Wise

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The decision has reignited calls for the review,1 which includes studies only up to May 2014, to be withdrawn for being outdated and misleading.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

 

It seems a fair account of the situation but to my mind lacks bite.
Where is the comment that there was a 'full on attempt to block the project from advocates of the treatment' or whatever?

 

At some point somebody needs to say who blocked the re-write. It wasn't a robot. It was a human being. They need to be named and shamed.
Where is Soares-Weiser in all this?
Where is Leng?

 

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.

 

Can anyone point me to where Hilda made that remark about treatment advocates blocking the project?

 

“Advocates of the intervention launched a full-on bid to try to stop the project.”
https://absolutelymaybe.plos.org/20...cientific-society-and-community-values-clash/

(middle of the paragraph starting with “The Project was supposed to take…”)

 

Talk is cheap. I haven't seen anything but cheap talk so far.