S4ME: 2023 Open Letter, complaints, petition updates regarding Cochrane and the CFS Exercise Therapy Review

PETITION UPDATE

Cochrane abandons the replacement review
19 Dec 2024


Cochrane cancels the review update

A year after Hilda Bastian's last update from the Independent Advisory Group, and months after she last responded to any posts on her talkpage, Cochrane has made the following announcement:

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Cochrane's Update on ‘Exercise therapy for chronic fatigue syndrome’

Monday, December 16, 2024

"In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.

Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered."

***********

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.

Just days before this announcement, the committee and members of Science for ME wrote to all the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review - see the letter here.

The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review.

Thanks
Thank you to all of you who have supported the campaign - we have seen a surge in petition numbers and comments lately. Please keep sharing the link. If you have contact with any funders of Cochrane, please inform them of the failure of Cochrane's quality control mechanisms.

Thanks to #ThereForME, an advocacy group calling for better care from the United Kingdom public health system for people with ME/CFS and Long Covid.
And thanks to the United Kingdom Members of Parliament in the All Party Parliamentary Group on ME. The addition of these two organisation brings the total number of supporting organisations to 79, from 25 countries.

We hope that Cochrane's abandonment of a replacement review process will allow those patient charities that were previously constrained by their involvement in the IAG to now add their names in support of the call for the 2019 review to be withdrawn.

 

PETITION UPDATE

How a review published in 2019 became a review published in 2024
24 Dec 2024

2019 or 2024?

The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is astonishing.

Back in 2019, the Cochrane Editor-in-Chief Dr Karla Soares-Weiser published the Larun et al review, but noted that, even after a series of amendments, it 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" and announced the new review development process on this "globally important health topic". Since then, a global pandemic has resulted in a huge increase in the number of people meeting ME/CFS diagnostic criteria, surely making it an even more important topic.

As we reported in the last update, Cochrane announced that that replacement review that has been in the works for some five years would now not go ahead. The carefully selected writing team finished a protocol nearly two years ago and delivered it to Cochrane for approval. The carefully selected Independent Advisory Group was poised to provide comments on the protocol, but was never given it. Cochrane abandoned the new review process, citing "insufficient new research in the field" and "a lack of resources to oversee the work". We'll have a closer look at those reasons in the next update.

On 19 December 2024 Cochrane added a new editorial note to the 2019 review, informing readers that
" Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."

To be clear, the 2019 review has not been changed, it has not been updated.

The only things that have changed about the 2019 review are the addition of that editorial note about the abandonment of the new review process...
... and the citation for the 2019 review.
"Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2024"
Yes, it is now a review with a 2024 publication date. It is not yet clear if the 2024 citation date is just an error, or if it was done deliberately. If an error, we expect that the incorrect date will be swiftly corrected.

The effect of a 2024 publication date is to make the review seem much more relevant than it otherwise would. The unchanged 2019 review now appears from the citation to be a fresh new up-to-date review, and indeed it has been shared on social media, probably mistakenly, as a new review. Uninformed readers will assume that it represents a distillation of the latest knowledge using the best methods, and that criticisms of the 2019 version have been fully addressed. The review, with its 2024 date, appears newer than the 2021 NICE Guidelines and Evidence Review which unequivocally warned that people with ME/CFS should not be treated Graded Exercise Therapy.

A 2024 publication date is particularly misleading as the 2019 version of the review was actually the result of a series of amendments over several years. The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report.

Surely this situation where an unchanged review is relabelled with a publication date 5 years after the actual publication date is preposterous and will not be allowed to stand?


Our best wishes to the supporters of this campaign
As a new year approaches, we thank you for your support and hope that 2025 brings better health, much happiness and exciting new developments in the understanding of ME/CFS.
______________

For discussion go to the Petition thread.

 

PETITION UPDATE

On Cochrane's excuses for scrapping the replacement review process they set up: Part 1

5 Jan 2025
People following this saga will be aware that, in December 2024, Cochrane abandoned the preparation of a replacement for the flawed 2019 Larun et al review of exercise therapies for ME/CFS. Instead, it just relabelled the 2019 review as a 2024 review, without changing a word. Job done, please move on.

Here's how Cochrane announced the decision:
"In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding."

So, Cochrane gave two reasons
1. a lack of resources to oversee the work of making a replacement review, and
2. insufficient new research in the field

In this update, we will consider the issue of 'a lack of resources'. We'll cover the issue of 'insufficient new research' in the next update.


An organisation providing medical advice to the world without funds for quality control processes?
In 2019 it was Cochrane who effectively said 'we know this Larun et al review isn't fit for purpose, but we're publishing it anyway. Don't all you critics of the review worry though, we'll make a new one to replace it; that should take about two years'. For five years the ME/CFS community waited more or less patiently for the promised new review. Cochrane answered criticisms of the old review with 'the new review will address any problems'. Our complaints about the Larun et al review submitted over a year ago have still not been addressed.

Let us assume for a moment that the abandonment of the new review and the inability to consider and respond to complaints about the old review is truly due to a lack of resources. Certainly Cochrane has been suffering from the withdrawal of large amounts of funding as its funders reconsider the value of its service. But, is it acceptable for a global organisation that creates medical advice to be unable to provide functioning processes for ensuring that the advice is accurate and does not cause harm?

If Cochrane really can't find resources to ensure it provides safe advice on this topic, which it noted in 2019 was of global importance and which has become even more important with the high incidence of ME/CFS following Covid-19 infections, then what other short cuts is it taking on the quality of the advice it provides?


Cochrane made things complicated
A typical Cochrane review is not a massive or particularly expensive task. It was Cochrane who decided to make this review more complicated, with its substantial writing team including Cochrane staff, and the Independent Advisory Group (IAG). Cochrane announced the new review process with fanfare, saying it was a pilot for a new era of stakeholder engagement. When exercise therapy proponents complained about the new review, Cochrane halted the work of the IAG for well over a year, then made the IAG even bigger. Rather than simply and efficiently getting on with the task, and following where the evidence, or lack of it, led, Cochrane allowed the writing of the new review to be highly politicised.

Much of the work has been done
Drafting the protocol for a review is a substantial part of the work of a review. The draft protocol for the new review was submitted to Cochrane editors two years ago. Cochrane appear to have done nothing with it, since it never reached the IAG for comment, and the author group heard no more. Cochrane could have streamlined the multistage editorial process for the protocol that they had set up, and the whole project could have been completed by now.

The costs versus the benefits
So, it seems likely that the cost of completing the review is actually relatively low. Against the low cost, the benefits of completing a good quality new review would have been substantial. Millions of people would have benefited from improved clinical guidance. Cochrane staff would not have had to deal with the ongoing global concern about the Larun et al review, concern which surely will only increase in strength and effectiveness. Cochrane and each of its staff members and the authors of the Larun at al review would have avoided ongoing damage to their reputations.

So, high benefits of completing a good quality review versus low costs. That makes us wonder, what are we missing? Is Cochrane's funding contingent on maintaining the status quo? Do personal allegiances outweigh a commitment to good science? An alternative no-cost solution would have been to withdraw the Larun review - there are good grounds to do so. Why is Cochrane so determined to maintain the Larun et al review, in the face of such substantial costs to people with ME/CFS and to itself?

Thanks
As always, we are grateful to all of you who are supporting this campaign. Please keep sharing the petition link on social media. If you have links with journalists who might be intrigued to know that Cochrane is recycling outdated reviews by simply changing the publication date, please do let them know about the story.

 

PETITION UPDATE

https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33189070

News from the IAG, and other good things

24 Jan 2025
Things have been happening!

And so we'll put our examination of Cochrane's second excuse for abandoning the replacement review process in the next update.

In this update, we cover a Retraction Watch article about the petition. Also, finally, news from the Independent Advisory Group that was set up to provide stakeholder input into the development of the replacement review and from its leader, Hilda Bastian. We'll keep things short because we think the best thing to do is to click on the links and read for yourself.



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."



The Independent Advisory Group's open letter to Cochrane

Also today, the Independent Advisory Group finally broke its long silence, criticising Cochrane in an open letter.

It said
"the IAG’s advice was rarely sought, and we were not given an opportunity to provide feedback about the cancellation of the update of the review. Through its Consumer Engagement and Involvement webpages, Cochrane professes its commitment to involving patients, carers, and other stakeholders in its research. Consumer involvement, it is stated, “is vital to Cochrane’s work” and is “a key part of the production of Cochrane evidence.” [7] Our experience, as members of a stakeholder IAG, stands in stark contrast to these statements, indicating a troubling disconnect between Cochrane’s stated commitment to consumer involvement and their actions towards consumers they chose to involve.

We express our 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 re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors. "



Hilda Bastian's blog
Hilda Bastian also published a long blog setting out her view of the long running saga of the Larun et al and its abandoned replacement:
When Journal, Scientific Society, and Community Values Clash

It is worth re-iterating that Hilda is a Cochrane insider, an Emeritus Member of Cochrane. She also notes that Cochrane has made much of its commitment to fostering “open and transparent communication and decision-making,” and “being open and responsive to criticism.” But, in practice, she acknowledges that it has fallen far short of those aims, ignoring valid complaints and building walls to separate itself from the people affected by their reviews. The Independent Advisory Group that Cochrane itself set up to be a shining example of stakeholder involvement hardly got a look in.

Hilda writes of Cochrane:

'It was a shock to see what they did in December'.
"After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.

It’s even more unacceptable for this particular patient community. As Yong has pointed out, “ME/CFS patients face extreme dismissal and disbelief” about their suffering, from many directions, and it hurts. ”Societal dismissal of this kind,” he said, “leads to scientific neglect.” Cochrane is compounding this."

**********
Now that the IAG has finally gone public, we call on those ME/CFS organisations with representatives in the IAG who previously felt they had to keep quiet to join this campaign. Please stand with the 79 ME/CFS and Long Covid organisations from around the world already supporting the call for the Larun et al review to be withdrawn from use.

We have called for the Larun et al review to be withdrawn on the basis of harms, a basis allowed in their withdrawal policy. At the very least, Cochrane should make it clear that the review must not be used for clinical decision-making, to stop the review causing harm, and they should reverse their decision to republish the review as if it were a new 2024 version.

Please keep sharing the petition link and looking for opportunities to help Cochrane understand that they are a long way from living up to their professed values of collaboration, relevance (with the right evidence at the right time), integrity (independence and transparency) and quality (maintaining rigour and trust).

__________________

End of update.

For discussion of the latest developments, go to this thread:
2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

 

Today, 26th January 2025, the S4ME committee submitted the following complaint to Cochrane complaints:
_______________

We, the committee of the Science for ME international forum, submit the following complaint to Cochrane.

The Cochrane review that is the subject of our complaint is Exercise Therapy for Chronic Fatigue Syndrome, Larun et al, 2019 and 2024 versions.

All our letters and complaints, and responses we received from Cochrane are on public record on the Science for ME forum. We will post this complaint there too.
https://www.s4me.info/threads/s4me-...-on-the-me-cfs-exercise-therapy-review.34973/

Complaint January 2025

This complaint is on the basis of a perceived failure of Cochrane to follow its own complaints procedure in investigating our previous complaints and failing to inform us of the outcome.

Promises made to us in communications from senior Cochrane representatives with regard to investigation of our complaints have not been fulfilled. We have not been informed of the outcome of any of our complaints, nor which of our complaints were investigated and which were not.

The details are set out below:

30th October 2023
Following some correspondence with Cochrane starting in August 2023 in which we asked for the review to be withdrawn, we sent a letter of complaint detailing the following five complaints:

Complaint A: A failure of process - non removal of an outdated and incorrect review in the timescale promised.
Complaint B: A failure of process - failure to follow normal procedure on a critical comment
Complaint C: A failure of process - failure to take effective action for over two years by the Editor-in-Chief on the stalled new review process.
Complaint D: A failure of process - the Editor-in-Chief's failure to address serious concerns from the public, and passing them, inappropriately, to the IAG that has no power to act on our requests, and has a non functioning email address.
Complaint E: An important policy misjudgement - making the withdrawal of the 2019 review contingent on the publication of a new review.

https://www.s4me.info/threads/s4me-...fs-exercise-therapy-review.34973/#post-501221

Correspondence November, December 2023
There followed some correspondence due to confusions at Cochrane about our complaints.
13/11/23: Lucy Johnson-Brown, Head of Governance, confused our complaints with a previous one by a person and on a topic unknown to us.
17/11/23: A reply from us pointing out the misunderstanding and asking for our complaint to be considered properly.
17/11/23: Lucy Johnson-Brown sent a further refusal to consider our complaints while also stating commitment to follow the complaints procedure.
20/11/23: We replied expressing shock that our complaints did not appear to be getting due consideration unlike those of others with opposing complaints. We asked for confirmation that the trustees had signed of on this decision not to follow the complaints procedure.
19/12/23: Jordi Pardo Pardo, interim chair of governors, stated, without reasons that withdrawal of the 2019 review had already been rejected following a previous complaint on unspecified grounds.
He concluded:
"However, the other matters you have raised are under review, and we will get back to you in due course."

17th March 2024
The Science for ME committee, concerned about the lack of communication and action on the new review, wrote again to senior Cochrane representatives. We asked them to reconsider their decision not to withdraw the 2019 review. We set out, with details and references, evidence under the following headings for withdrawal of the review on the grounds of harm:
Evidence in support of withdrawal
1. Withdrawal of the review is in line with Cochrane's editorial policy
2. Cochrane's guidance to reviewers has not been followed
3.The 2019 review failed to properly consider evidence of harms.
4. Patients' perceptions of harm should be considered as relevant as patients' perceptions of improvement
5. The harms are considerable
6. New evidence of harms supports withdrawal
7. Two conflicting paradigms
8. The harms include effects on patients’ mental health
9. Biases and conflicts of interest of advisors to the review
10. The NICE approach to harms evidence, and the pushback from GET supporters

https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-2#post-521800

April 2024
9/4/24: Cochrane support replied, saying
"We will include the additional points and references to studies in our review of the issues raised by S4ME in previous correspondence."

August 2024
7/8/24: We wrote to Cochrane raising the long silence and lack of information about which of our complaints are being considered, and asking:
"Please can you confirm that the 2019 review is being considered for withdrawal on the grounds that Following the conclusions of the published review could result in harm to patients or populations of interest (other than known adverse effects)?"
We also stated that:
"In our view, it is completely unacceptable for Cochrane, a registered charity whose charitable object is "the protection and preservation of public health..", to deprioritise work affecting the health of millions of very sick people, leaving us vulnerable to harmful treatment for years after promising to update a seriously flawed review."
7/8/24: Cochrane complaints acknowleded our complaint in a standard response.
21/8/24 and 27/9/24: Cochrane complaints - "we are still investigating and we will update you as soon as we can."

December 2024
16/12/24 Cochrane announced cancellation of the new review process. Cochrane republished the 2019 review unchanged as a new 2024 version.
____________

It is clear from the above that Cochrane has not followed its complaints procedure with regard to our complaints.

We have no information about whether a complaints process was ever started or which of our complaints were intended to be considered. Nor have we been informed whether the senior editors took seriously or even read the detailed and fully referenced information we supplied that we consider fulfil Cochrane's own rules on withdrawal of reviews on the grounds of harm.

None of the promises to keep us updated have been fulfilled, nor have we been supplied with a copy of the outcome of the review of our complaints.
________________

This lack of a response leaves us, according to your complaints procedure, unable to escalate our complaint through the appeals board since we don't have a ruling, nor to Cope and the Charity Commission. This is unacceptable.

Please can you supply us urgently with answers to the following questions:

1. Did Cochrane complaints carry out a complaints review procedure into our complaints dated 30th October 2023?
If so, please inform us of which complaints were reviewed and the outcomes.
If not, please explain why you left our complaints unaddressed for over a year, and failed to inform us.

2. Did Cochrane complaints and the relevant editors carry out a proper examination of the evidence on harms we supplied on 17th March 2024?
If so, please supply us with the outcome explaining why Cochrane editors did not consider the evidence grounds for withdrawal according to Cochrane's policy on withdrawal on the basis of harms.
If not, why not, when we were promised it would be included in the review of our complaints.
______________

We intend to take this complaint further. Cochrane has an obligation under your own policies to inform us of the outcome of our complaints, especially as we are required to provide such a ruling in taking our complaint to appeal and to COPE and the Charity Commission.
https://community.cochrane.org/orga...l-members-and-supporters/complaints-procedure

If we do not get a response with clearly explained rulings on all our complaints by 14th February 2025, we will escalate the complaint anyway, adding a further complaint of Cochrane's refusal to carry out your own complaints process and inform us of the outcomes.
______________

Trish Davis on behalf of the committee of the Science for ME international forum
_________________

To discuss this and other developments go to this thread:
2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

 

PETITION UPDATE

https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33210062

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.
__________________

To discuss this and other developments go to this thread:
2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

 

The S4ME committee has today submitted the following set of complaints to the Cochrane official complaints process.

For discussion, go to this thread:
2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

It's long so has been split over two posts.
___________________________

Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it.

These complaints refer to the review Exercise Therapy for CFS by Larun et al, 2019 and 2024 versions (the Review). [1,2]

In each case, we set out our contention that Cochrane has acted wrongly, demonstrating failure to follow its own processes, guidance and precedents, and has acted with severe misjudgement.

Complaint 2025-1: Creation of a new citation and publication date as a result of attaching an editorial note to an unchanged review
Complaint 2025-2: Publication of a review as a new version without critical comments being addressed
Complaint 2025-3: Misleading labelling of the unaddressed critical comments as applying to 'a previous version'
Complaint 2025-4: The appearance but not the substance of an update
Complaint 2025-5: Questioning Cochrane's decision making. What was the real reason behind Cochrane's actions on this review?
____________

We quote in full the editorial note attached to the 2024 (version 9) version of the Review, the Review being identical in all respects, other than the editorial note, to the 2019 (version 8) Review.

"Editorial note (19 December 2024; amended 31 January 2025):
Larun L, Brurberg KG, Odgaard‐Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2019, Issue 10. Art. No.: CD003200. DOI: 10.1002/14651858.CD003200.pub8. Accessed 18 December 2024.

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. The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019, which includes studies from searches up to 9 May 2014." [2]
____________


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.
________________


Complaint 2025-2: Publication as a new version without the critical comments being addressed

Previous versions of the Review by Larun et al, since the original 2015 version, have all been the result of substantive amendments following feedback and required editorial scrutiny and approval before the new version was published. Indeed the 2019 version required multiple editorial interventions, and the previous editor in chief, David Tovey, indicated that it should be withdrawn.

Following publication in 2019, several substantive critical comments raised further issues with the 2019 version, notably that by Michiel Tack in 2020. [5]

A senior Cochrane editor, John Hilton, responded to Tack's comment:
" Note on the status of this review:
Response from the editorial team at the Cochrane Editorial and Methods Department:
"We thank Michiel Tack for the feedback on this review, and we appreciate the thorough and well-referenced comment. This review and its protocol are in the process of being updated as a priority... We will ensure that the comments you have provided will be reviewed during the updating process by the independent advisory group and the authors of the review." [6]

Since the 2024 version has not addressed any of the issues raised by Tack and others, the normal Cochrane process of editorial scrutiny and amendment has not happened. It is clear from Hilton's comment that publication of a new version of the review was intended to take into account the critical comments of Tack and others.

We note that Tack has drawn attention to this problem in his recent comment: "Comments remained unaddressed for years" [7]

The effect of publication without consideration of the comments is that the review continues to have possible identified flaws. This and the long delays in responding to comments also indicates that Cochrane has problems with the functioning of its quality control system, suggesting that there may be a wider problem with the accuracy of the information Cochrane endorses.
____________


Complaint 2025-3: Misleading labelling of the unaddressed critical comments as applying to 'a previous version'

We note that all the comments that had been submitted addressing issues in the 2019 version are now attached to the 2024 version and labelled with the note:
"Note: This comment relates to a previous version of this review: https://doi.org/10.1002/14651858.CD003200.pub8"

Given that the Review is unchanged and there is no evidence that the authors or editors have addressed any of the comments, they clearly apply equally to the 2024 version, as Michiel Tack explains in his comment [7]. The comments apply until the issues they raise have been considered, any necessary action taken and the commenter informed.

The effect of Cochrane noting that these comments do not apply to the latest (but unchanged) version is that Cochrane appears to be dishonestly suggesting to readers of the 2024 version that the comments were considered and any necessary action has already been taken.
____________________

Complaint 2025-4: The appearance but not the substance of an update

We quote from Cochrane's editorial policies:

"Updating Cochrane reviews
An update of a Cochrane review must involve a search for new studies. If any new studies are found, these must be added to the relevant section of the Cochrane review and classified as included, excluded, or ongoing studies (or ‘Studies awaiting classification’ if all reasonable efforts to classify it in one of these ways have failed), before labelling the revised Cochrane review as an update. Any other change to a Cochrane review, and any change to a protocol for a Cochrane review, is classified as an amendment.

"A Cochrane review should be updated based on need. Aspects to consider are the currency of the question, the impact and usage of the current version, the availability of additional studies (or additional data for studies already included), and an assessment of the likely change of any newly identified studies or additional data on the current review version; in addition to methodological enhancements that may be required.

"Updated Cochrane reviews acknowledge and cite the previous versions of the same Cochrane review.

"Authors need to complete a new licence for publication and declare relevant conflicts of interest for each update." [4]

None of the above requirements for an update have been met in the 2024 version [2], yet the publication date is suggestive of a recent update. The editorial note says:

"The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review". [2]

This leaves open the possibility that this version is instead a partial update. There is nothing to make clear that this is the same document that Cochrane itself recognised as inadequate and requiring replacement in 2019. [9]

The 2024 replicate of the 2019 version obviously has not considered new relevant research and evidence. It has not applied modern review methodology standards. It has not corrected the flaws. And yet it, to most readers, it will appear to be a recent synthesis of the evidence.

In the 2016 paper, "When and how to update systematic reviews: consensus and checklist", Cochrane experts led by Professor Paul Garner, and including the current editor-in-chief, Dr Soares-Weiser, state:

"Newly identified studies can change the conclusion of a review. If they have not been included, this threatens the validity of the review, and, at worst, means the review could mislead... Indeed, there is probably added value to updating a review, because this will include taking into account comments and criticisms, and adoption of new methods in an iterative process" [13]

A careful consideration of new studies, comments, criticisms and methods would have substantially improved the quality of the Review. It surely runs against Cochrane's stated values to have created the appearance of an update, while nothing at all has changed.


Part A: New research missed

Cochrane's unsigned statement dated 16th December 2024 suggested that there is insufficient new research in the field to warrant an update (or indeed a new review to replace it). [8]

We question the basis for this claim of no new research, since we understand that in cancelling the replacement review project, Cochrane also rejected the draft protocol. If there was no agreed protocol in place with specifications of the research to be included, how can Cochrane editors claim there is no relevant new research?

Actually, to the contrary, there has been new research since the Review searched for studies in 2014, as well as accumulating evidence of harm.

For example, a graded exercise therapy and graded activity therapy study was done in children and young people, the MAGENTA study [10]. It was completed in 2019 and finally published in 2024, after the NICE ME/CFS Guideline process was complete. 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 dismissed the MAGENTA study, noting that the Review is only of adult studies and so studies of young people are irrelevant. There is no reason to think that exercise therapy would be any more effective for adults with ME/CFS than for the younger people in this study. In fact, it could be expected that young people would respond better to exercise therapy, given some evidence for better natural recovery rates and the fact that they have their parents to assist with compliance with the programme. Professor Crawley, probably the leading pediatric clinician promoting exercise therapy for children with ME/CFS at the time, ran the MAGENTA study. In a presentation in 2016, [14] she noted that "this is different to adult chronic fatigue syndrome because children are much more likely to recover than adults". At that time, she clearly believed that the therapy was helping her patients. And yet, in a study with objective outcomes, it was not. Professor Crawley retired from medical practice just before the paper on the study was published.

As well as not finding a significant improvement from baseline, the MAGENTA study documented objective and long term physical deterioration and a reduction in the numbers of participants reporting school attendance; 27% of the participants in the graded exercise therapy arm were assessed as having suffered a clinically significant deterioration. 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 as documented in Michiel Tack's 2020 comment [5], by the Science for ME committee in March 2024 [11] and in the many testimonies of signatories to a petition started in 2023. [12].

The 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 this group. 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 Review. [15]

Since 2014, there have been many studies of Chinese exercise therapies such as tai chi and other forms of qigong. For example there is a review of 13 trials of tai chi and qigong [15]. It is odd that Cochrane, which claims global expertise in the identification of relevant studies, missed these. These Chinese studies have the same serious trial design flaws as the European studies included in the Review.

An effect of suggesting that there is insufficient new evidence for an update, and then appearing to update the Review but not taking into account the new evidence that actually is available is that readers will not benefit from recent evidence. Young people, and people in general will be subjected to therapy that does not work and that can harm, and clinicians and governments will not be advised that these treatments do not work. Patients and clinicians will continue to be confused by contradictory conclusions, with later work done by organisations such as NICE [19] and the CDC [18] finding these treatments do not work. Cochrane's reputation as a provider of unbiased and up to date evidence will suffer.

Another effect flows from Cochrane's tacit acceptance of poor trial methodologies. A meaningful update was an opportunity to highlight the widespread flawed methodology used in these studies (notably subjective outcomes in unblinded trials) that make findings of benefits unreliable, and call for the quality of studies of exercise therapy to be improved. The opportunity was missed.


Part B: Outdated review methods
When Cochrane's Editor-in-Chief, Karla Soares-Weiser, committed to a replacement review in 2019, she noted that the Review was "still based on a set of methods from 2002" and that "a new approach to the publication of evidence in this area is needed" for this "globally important health topic". [9]

Five years later, years that include a pandemic that is leaving large numbers of people with post-Covid-19 ME/CFS, the topic that was globally important apparently now does not warrant any effort to ensure Cochrane's endorsed presentation of the evidence is sound.

The Review has adverse events as a second primary outcome, but interpreted this in the narrowest possible way. It failed to seek evidence beyond the eight included clinical trials, only one of which attempted to investigate adverse events, despite Cochrane's reviewer guidelines specifying wider search for harms data. [17]

Objective outcomes for which data was available in the included trials was ignored, and long term outcomes not included.

The Review, now dated 2024, includes these statements under the heading:
"Agreements and disagreements with other studies or reviews
...
The revised version offers major additions and changes. In line with recent updates provided in the Cochrane Handbook for Systematic Reviews of Interventions (Higgins 2011c), we have implemented several methodological improvements,..." [1,2]

This edition of the handbook is out of date. We note that the version we accessed in March 2024:
"specifies a more detailed analysis of adverse effects in cases such as this where the potential for harm has a major influence on treatment and policy decisions. In such cases it is expected that a bespoke search process will be undertaken that includes a wider selection of sources than that required to identify data on beneficial outcomes". [11, 17]

Despite specifying adverse outcomes (harms) as one of only two primary outcomes, the Review failed to follow this guidance.

The effect of the various outdated methodologies is to produce a 2024 dated review that reflects poorly on Cochrane and results in inaccurate conclusions. It is a failure of procedure and a serious misjudgement.
________________

continued in the next post...

 

... continued from previous post.

Part C: Outdated comparison claiming agreement with other reviews

The Review states:
"Moreover, the results reported here correspond well with those of other systematic reviews (Bagnall 2002; Larun 2011; Prins 2006) and with existing guidelines (NICE 2007)."

This statement is no longer accurate. Both the 2015 USA CDC and 2021 UK NICE evidence reviews found exercise therapy is not clinically effective, and the guidance based on the reviews specifically recommended against graded exercise therapy. [18, 19]

The effect of such misinformation in a review dated and cited as a new 2024 review is to create confusion and delay acceptance of more recent findings that the evidence does not support the use of exercise therapy as a treatment for ME/CFS. The Review will doubtless be cited by proponents of exercise therapy for ME/CFS in forthcoming ME/CFS guideline development processes in Australia and the Netherlands, delaying the provision of better clinical care in those countries for decades.
____________________

Complaint 2025-5: Questioning Cochrane's decision making. What was the real reason behind Cochrane's actions on this review?

We question the decision to make a statement in the Editorial note that "Cochrane maintains its decision to publish this Cochrane review in 2019, which includes studies from searches up to 9 May 2014." This is meaningless in the context of a publication unchanged in 2024. If anything, it advertises Cochrane editors unwillingness to follow their normal rules and procedures in updating outdated reviews. It reads as an admission of failure. The statement will not however alert readers of the Review that it is not suitable for clinical decision-making in 2024.

We question the claim of a "lack of resources to oversee the work" of developing a new review. Much of the work is already done, with the protocol drafted. Most of the IAG and review writing team members are volunteers, not employed by Cochrane, and capable between them of producing a protocol and review in the normal way. It was Cochrane editors who designed extra editorial layers in the process, which with a will, could be simplified. This is surely either an excuse or an admission of incompetence.

We question the basis for the claim that there is no new research, since we understand that in cancelling the new review project, Cochrane also rejected the draft protocol. If there was no agreed protocol in place specifying the literature search to be carried out, how could Cochrane editors know whether there was new research that should be included? And in any case, as we have explained, there are wider reasons for updating or replacing outdated reviews, and, as we have demonstrated in Complaint 2025:4, there is relevant new research and evidence.

We understand from an article by Martin Rücker [20] that Cochrane sources have said the decision was made, not on these grounds stated by Cochrane [8], but in an attempt to avoid dealing with controversy, much of which could have been avoided if Cochrane leaders had acted professionally.

To quote the article:
"The Cochrane organization told RiffReporter that the decision was made at a meeting of the Governing Board, Cochrane's highest governing body, which took place in Prague from 7-9 September".
He refers to the masks debacle, and continues:
"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."

Rücker further said this was due to pressure from exercise therapy supporters including Peter White and Michael Sharpe, both PACE trial principal investigators, and both having long term financial conflicts of interest in their paid role advising health insurance companies. Paul Garner is also cited as influential.

If Martin Rücker is correct, Cochrane has ignored good science and the reports of harm from people with ME/CFS and bent to the will of people with a vested interest in exercise therapy being reported to be useful. This is a complete contravention of your charitable purpose.

Controversy could be avoided if Cochrane leaders were to exclude, as they should, any consideration of further complaints, influence (covert or overt) or role in decision making, from those with conflicts of interest on reputational, career or financial grounds. This includes Simon Wessely, Paul Garner, Michael Sharpe, Peter White, Paul Glasziou and all others who promote exercise therapy for ME/CFS. A helpful list can be found on the author list of a vapid attempt to overturn the NICE guideline. [21] We recommend you read the list of competing interests. The article was easily refuted by the guideline committee chair and vice chair, and ridiculed by Professor Brian Hughes. [22,23]

NICE leaders managed to stand up to overt [22] and covert [24] efforts to cancel the 2021 evidence review and guideline. Cochrane leaders need to show the same backbone and ethical values, where scientific evidence and the welfare of patients comes before vested interests.
_____________________

Conclusion and a way forward.

We find Cochrane's dragging out the promised two year replacement review process and sudden decision after five years of little progress to cancel the new review, and further to publish the flawed and outdated 2019 review five years on as if it were a new review unethical. Cochrane's ongoing actions in relation to this Review are harming its reputation, misleading clinicians, and most important of all, harming many thousands of patients.

We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS.

We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients:

1. Remove the 2024 version (version 9) from publication.

2. Post the Editor's note on the 2019 version stating cancellation of the new review process, but removing ongoing endorsement of the 2019 Review.

3. Post a new Editor's note, as advised by the Independent Advisory Group, saying that the Review is outdated and inaccurate, and should not be used for clinical care.

4. Replace the inaccurate notes attached to the critical comments submitted since 2019 with a note clarifying that the comments have not been addressed or acted on by the Review authors.

5. Make a public statement that the Review should not be used for clinical care on the grounds that its findings are unsound.

6. Stand firm against pressure from proponents of exercise therapy for ME/CFS with vested interests, including all those we indicated in Complaint 2025-5.

7. Set up an urgent review of the decision not to withdraw the Larun review. This may necessitate seeking advice from external experts in clinical trials from medical fields outside psychiatry, psychology, psychosomatics, rehabilitation and exercise medicine, and with no expressed support for exercise therapy or other psychobehavioural interventions for ME/CFS or conflicts of interest. It should also involve an unbiased review of all evidence provided by us and others including comments, complaints and material collated by the Independent Advisory group.
__________________

Trish Davis and Maree Candish on behalf of the committee of the Science for ME international forum.
__________________

References

1. Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price
Version published: 02 October 2019
https://doi.org/10.1002/14651858.CD003200.pub8

2. Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price
Version published: 19 December 2024
https://doi.org/10.1002/14651858.CD003200.pub9

3. Cochrane Editorial Guidance - Editorial Notes
Actions to add an editorial note: Specifications for publishing and display.
https://documentation.cochrane.org/egr/editorial-notes-318472364.html#Editorialnotes-Policy

4. Cochrane Database of Systematic Reviews: editorial policies: Updating Cochrane reviews
https://www.cochranelibrary.com/cdsr/editorial-policies#updating-reviews

5. Michiel Tack. Problems with the amended version (Version published: 02 October 2019). Cochrane Library. 26 August 2020.
https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=266353165

6. John Hilton, Cochrane senior editor. Note on the status of this review.
Published : 26 August 2020
https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=266353280

7. Michiel Tack. Comments remained unaddressed for years
Published : 27 January 2025
https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=447929992

8. Cochrane. Update on ‘Exercise therapy for chronic fatigue syndrome’. 16 December 2024
https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome

9. Cochrane. Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’. 2 October 2019
https://www.cochrane.org/news/cfs

10. Gaunt, D.M., Brigden, A., Harris, S.R.S. et al. Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial. Eur J Pediatr 183, 2343–2351 (2024). https://doi.org/10.1007/s00431-024-05458-x

11 Science for ME committee. Open letter to Cochrane. 18 March 2024
https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-2#post-521800

12. Science for ME committee. Petition: Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
https://chng.it/zTZ7vX9Czd

13. Garner P, Hopewell S, Chandler J, MacLehose H, Akl E A, Beyene J et al. When and how to update systematic reviews: consensus and checklist BMJ 2016; 354 :i3507
doi:10.1136/bmj.i3507

14. Esther Crawley (Bristol University), Paediatric CFS/ME, UK CMRC Conference 2016 part 8/10, 5.50 minutes
youtube.com/watch?v=w9gLhNO3LIw

15. Paul Glasziou, HANDI chair, Incremental physical activity for chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME), RACGP, HANDI Interventions, First published: March 2015, Updated: April 2024
https://www.racgp.org.au/clinical-r...cise/incremental-physical-activity-for-cfs-me

16. Kong L, Ren J, Fang S, Li Y, Wu Z, Zhou X, Hao Q, Fang M, Zhang YQ. Effects of traditional Chinese mind-body exercises for patients with chronic fatigue syndrome: A systematic review and meta-analysis. J Glob Health. 2023 Nov 24;13:04157.
doi: 10.7189/jogh.13.04157. PMID: 37994837; PMCID: PMC10666566.

17. Peryer G, Golder S, Junqueira D, Vohra S, Loke YK. Chapter 19: Adverse effects [last updated October 2019]. In: Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, Welch VA (editors). Cochrane Handbook for Systematic Reviews of Interventions version 6.5. Cochrane, 2024. Available from www.training.cochrane.org/handbook.
https://training.cochrane.org/handbook/current/chapter-19

18. USA CDC: Managing ME/CFS
https://www.cdc.gov/me-cfs/management/?CDC_AAref_Val=https://www.cdc.gov/me-cfs/treatment/index.html

19. UK NICE NG206 ME/CFS Evidence reviews and Guideline, 2021
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs

20. Martin Rücker, RiffReporter: ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network (translated from German)
https://www.riffreporter.de/de/wissen/mecfs-cochrane-aktivierungstherapie-get-pace-exercise-bewegung

21. Peter White et al. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis, JNNP, Volume 94 Issue 12, July 2023.
https://jnnp.bmj.com/content/94/12/1056


22. Peter W Barry, Ilora Finlay et al. NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, JNNP, Volume 95, Issue 7,
https://doi.org/10.1136/jnnp-2023-332731

23. Brian Hughes, The Science Bit, The cries for help are getting louder. And that’s a good sign, July 2023.
https://thesciencebit.net/2023/07/12/the-cries-for-help-are-getting-louder-and-thats-a-good-sign/

24. Dom Salisbury: Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause, December 2021
https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/

 

PETITION UPDATE

Significant revelations
10 Feb 2025

Significant revelations from a German investigative journalist
In a detailed article in German, Martin Rücker, part of RiffReporter, presented some extraordinary findings from his investigation of the Cochrane story. He reported that Cochrane sources have said the decision to abandon the replacement review process was made, not on the grounds stated by Cochrane, but in an attempt to avoid dealing with controversy.

"The Cochrane organization told RiffReporter that the decision was made at a meeting of the Governing Board, Cochrane's highest governing body, which took place in Prague from 7-9 September [2024]".
He refers to a controversy where a Cochrane review appeared to support the idea that masks are not useful in the control of Covid-19 (for more on the mask review, see here).

Rücker continued:
"According to people involved, [the mask controversy] 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."

Rücker further said that pressure from exercise therapy supporters including Peter White and Michael Sharpe, both PACE trial principal investigators, and both having long term financial conflicts of interest in their paid role advising health insurance companies, and from Paul Garner had been influencing Cochrane's decision-making.

David Tuller in The Sick Times
Another investigative journalist, David Tuller, published a great article in The Sick Times '"Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review'.

His article provides an accessible summary of the events for people new to this saga. It includes comments from two of the writing team Cochrane had appointed to update the review:
Todd Davenport: "This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies"
Mary Dimmock: "We put a lot of work into doing this in good faith, and they just pulled it with no consideration for the patients"
Tuller concluded ".. it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well."

Tuller has also written about a letter submitted to the BMJ, a medical journal, by Professor Jonathan Edwards. Professor Edwards notes that it is clear that his previous concerns about Cochrane's conflicts of interests are well founded. He wrote
"This really is a shocking story. Whoever was responsible for the decision to block the project should be required to publicly explain their actions. Otherwise, Cochrane’s reputation is worthless."

Science for ME's deadline for Cochrane looms
Two weeks ago, the Science for ME committee submitted a complaint to Cochrane about its failure to follow its complaint processes. Our complaint noted that we still have not had any meaningful response to the complaints we submitted in October 2023. We informed Cochrane that if we did not receive an appropriate response from them by 14 February 2025, we would have to notify various authorities of the failure of Cochrane's complaint system.

More complaints sent to Cochrane
Last week, the Science for ME committee submitted a detailed set of five new complaints with supporting evidence.

Complaints 1 to 4 focussed on the December 2024 relabelling of the 2019 Larun et al review as a 2024 review. An effect of the relabelling was to make previous critical comments that had been linked to the 2019 appear as though they had been addressed in the new version. These comments now appear with a note:
"Note: This comment relates to a previous version of this review:"
Given that the 2019 review is completely identical to the 2024 and that there was no response to the comments, the comments clearly apply equally to the 2024 version.

The relabelling of the review creates the false impression of a new review update that has considered recent research and addressed previous comments, just in time for ME/CFS guideline development processes in Australia and the Netherlands.

Complaint 5 addressed Cochrane's decision-making processes.
We concluded:..
"We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS. We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients."

Actions requested include removal of the 2024 version; an editorial note saying the review is outdated and should not be used for clinical care; standing firm against pressure from exercise proponents with vested interests; and re-considering the decision not to withdraw the 2019 review.

Thanks
We appreciate the journalists investigating Cochrane's actions; their articles are crucial in bringing awareness. We also appreciate all of you who are supporting the campaign. It has been heartening to see the number of supporters grow so rapidly over recent weeks.

We continue to be moved by comments posted on the petition. They help us to remain committed to working towards the withdrawal of the Larun et al review.

 

Received by email from Cochrane today, 14th February 2025

New reply for your query (ticket #COMP00192844)

Dear Trish Davis,

This response relates to your complaint received on 26thJanuary 2025 relating to the published Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ (https://doi.org/10.1002/14651858.CD003200.pub8).

We acknowledge that our previous approach to managing complaints in Cochrane led to delays and, in the case of your complaints, frustration on your part. We apologise for this and recognise that our previous process could be difficult to navigate, which is why we overhauled our complaints process last year.

In 2024 Cochrane undertook an assessment of all the previous requests to withdraw the review published in 2019, including those submitted by S4ME. This was done to consider whether any request met the threshold for Cochrane’s policy for withdrawal. Cochrane’s assessments took account of the current guidance on harms from the Cochrane Handbook for Systematic Reviews of Interventions, Cochrane’s policy on withdrawal from the Cochrane Database of Systematic Reviews, and external quantitative and qualitative evidence syntheses on the topic. This included those used in the UK National Institute for Health and Care Excellence (NICE)guidelines, the German Institute for Quality and Efficiency in Health Care (IQWiG) evidence review, and an updated systematic review prepared by the Center for Disease Control (CDC) in the USA.

The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal. This process took several months to conclude, and we apologise for the delay in updating you on the status of your complaint.

Yours sincerely

Cochrane Complaints
______________________

To discuss, go to this thread:
https://www.s4me.info/threads/2025-...mments-and-articles.42305/page-29#post-587527