Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022 and beyond

I note that it is coming up to the third anniversary of the publication of the updated version of the old Cochrane review of exercise therapy for CFS.

Here is the history so far as we await the new review, as told in the News in Brief.

This is a closed thread, and will be added to when there are new developments to report.

To discuss this topic, please use this thread:
https://www.s4me.info/threads/indep...e-cfs-2020-led-by-hilda-bastian.13645/page-97

Note - some of the external links may no longer work.

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

 

Timeline from the News in Brief:

2019

Week beginning 30th September 2019

Updated Cochrane review

The review: The updated version of the Cochrane review ''Exercise therapy for chronic fatigue syndrome'' (Larun et al. 2019) has finally been published. The quality of evidence for several results such as serious adverse reactions has been downgraded to uncertain but the review still doesn’t include most of the objective outcomes. The conclusion now reads that the results apply to patients diagnosed according to the Fukuda or Oxford criteria and that “patients diagnosed using other criteria may experience different effects.”
Article here Thread here

Editor's note: In an accompanying comment, Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser acknowledges that the updated review does not resolve all questions. She explains that Cochrane is committed to the production of a full update of the Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group. Work on this update will start at the beginning of 2020 and involve partners from patient-advocacy groups.
Editorial comment here

Blog Post by Hilda Bastian: Health consumer advocate and PLOS blogger Hilda Bastian commented on the updated review. Bastian discloses that she had been directly involved in recent negotiations around the fate of the Cochrane review. She argues that the update is an improvement but that the review still over-estimates the strength of the evidence and its applicability. In her blog, Bastian suggests that it would have been reasonable to have the review withdrawn at the time of negotiations.
Blog here Thread here
_______________

Week beginning 7th October 2019

Trial by Error by David Tuller

More on the Revised Cochrane Review
David Tuller shares a useful compilation made by forum member Michiel Tack of all the changes made in the recent republished Cochrane review on graded exercise as CFS-treatment. It was particularly disappointing that the evidence for fatigue reduction through exercise is considered to have "moderate quality" instead of "low", and that PACE is considered to have low risk of selective reporting bias.
Article here Thread here

Cochrane review Commentary and discussion continues about the updated version of the review ''Exercise therapy for Chronic Fatigue Syndrome'' by Larun et al. (see last week's news).
Michiel Tack has detailed the main arguments against the review in a series of forum posts, also published by David Tuller (see above); and JaimeS has written an article for #MEAction.
#MEAction article here Thread here
_______________

Week beginning 14th October 2019

The influence of the Cochrane review on GET
Members of the forum have started a thread on the influence of the Cochrane review on graded exercise therapy (GET) for CFS on medical guidelines throughout the world. The review has influenced CFS guidelines in Denmark, Germany, Australia and other countries. Information on France, Spain and other European countries is still lacking.
Thread here
_________________

Week beginning 21st October 2019

Cochrane: Michiel Tack has written a blog post on why the Cochrane review, despite its recent amendment is still flawed and misleading. He argues that treatment effects found in the review are (1) small and lower than some estimates of the minimal clinically important difference (2) no longer statistically significant at follow-up and (3) contradicted by objective measurements. Tack argues that there is currently no plausible mechanism for the effectiveness of exercise therapy in CFS and that the treatment effects found are better explained as bias due to a lack of blinding.
Blog here Thread here
_________________

 

2020

Week beginning 10th February 2020

Cochrane review 'Exercise therapy for chronic fatigue syndrome'

The published note from the editorial team at Cochrane Editorial and Methods Department, 'A statement from the Editor in Chief about this review and its planned update' has been linked from the latest version of the review.
Link here

Hilda Bastian has been appointed to lead an Independent Advisory Group for the full update of the review. 'This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.'
Announcement here Thread here
_______________-

Week beginning 9th March 2020

Cochrane has published information on the update of their review on ‘Exercise therapy for chronic fatigue syndrome’. The author team of the current review have stepped down. The review’s revision and update will be conducted by systematic reviewers from Cochrane Response (Cochrane’s evidence consultancy unit), and additional new co-authors are being considered. The complete updating process for the review is expected to take about two years from early 2020.
Article here Thread here
_________________

Week beginning 11th May 2020

Cochrane. Hilda Bastian, head of the independent advisory group, has started making a list of accessible published commentaries and critiques of the Cochrane review on exercise therapy for CFS.
Tweet here Thread here

Week beginning 11th May 2020

Cochrane Independent Advisory Group Hilda Bastian, head of the independent advisory group, has created an open sheet for additional links related to the Cochrane review on exercise for CFS. This list contains documents that are relevant to the review but didn’t fit the scope of the first list which focuses on commentaries and critiques.
Open sheet here Thread here

Cochrane review comments
ME/CFS patient and forum member Michiel Tack has posted detailed comments on the revised version of the Cochrane review on exercise therapy for CFS.
Comments and thread here

Week beginning 25th May 2020

Cochrane
Caroline Struthers, senior EQUATOR Research Fellow at the University of Oxford, has obtained parts of the correspondence between Cochrane and the Norwegian Institute of Public Health regarding the review on exercise therapy for CFS through a freedom of information request.
Email correspondence and forum discussion here
-__________________

Week beginning 1st June 2020

Absolutely Maybe "Let's Be Serious About Bias in Protocols of Systematic Reviews"
Article by Hilda Bastian who is leading the Independent Advisory Group that will examine the Cochrane review on exercise and ME/CFS. "A fundamental problem with the original exercise therapy and ME/CFS protocol, it seems to me, was evident author bias in the text about both the intervention and the condition."
Article here Thread here
Hilda Bastian has joined the Science for ME forum as a guest member, resulting in a lively and worthwhile discussion.
Thread here
__________________

Week beginning 20th July 2020

Work
"Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review" by Vink & Vink-Niese.
Former physician and severe ME patient Mark Vink has published a detailed critique of the amended Cochrane review on exercise therapy for ME/CFS. The authors note multiple flaws in the review including “badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms.” The authors also highlight that exercise therapy does not restore the ability to work.
Article here Thread here
______________

Week beginning 10th August 2020

Evidently Cochrane In a special series called ‘Evidently Cochrane', Selena Ryan-Vig, Cochrane UK’s Communication and Engagement Officer, explores some cautionary examples to remind us that all treatments have potential harms. In a comment to the blog post, Professor Emeritus Jonathan Edwards highlighted that Cochrane hasn’t withdrawn its review exercise therapy for CFS despite legitimate concerns about the accuracy of the review and safety of the intervention.
Article here Thread here
______________

Week beginning 24th August 2020

Cochrane
The comments by S4ME forum member Michiel Tack to the Cochrane review on exercise therapy for CFS have now been published. Tack's excellent detailed comments were submitted more than 2 months ago, but due to technical difficulties with Cochrane, they have only now been added to the review. The editorial team at the Cochrane Editorial and Methods Department responded with a short (but rather contentless) comment.
Comments Tack here comment Cochrane here Thread here
______________

Week beginning 23rd November 2020

HealthyControl “Request to Cochrane to withdraw two reviews on Exercise therapy and CBT for Chronic Fatigue Syndrome”
Caroline Struthers, senior research fellow at Oxford University, notified the Editor in Chief of Cochrane, Karla Soares-Weiser, about issues raised about two Cochrane reviews, namely those on exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome. On 24 November Struthers received an email that Cochrane intend to conclude the investigation into the errors in both reviews by January 2021.
Blog here Thread here
________________

 

2021

Week beginning 1st February 2021

Cochrane
"Notification of a serious error in reviews Exercise therapy for chronic fatigue syndrome and CBT for chronic fatigue syndrome: resubmission"
Caroline Struthers has sent another letter to Cochrane, highlighting that the review on exercise therapy and the one on cognitive-behavioural therapy for ME/CFS contain serious errors that might lead to patients being harmed. Struthers argues that these reviews should be withdrawn.
Article and Thread here

Week beginning 22nd February 2021

Cochrane Following a complaint by Caroline Struthers, Cochrane’s CEO Mark Wilson has recommended amending the editorial note to their 2008 review on cognitive behaviour therapy for CFS. He proposes the note to state “This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision-making. The author team is no longer available to maintain the review.”
Thread with the letter by Mark Wilson here
_________________

Week beginning 3rd May 2021

Cochrane
Caroline Struthers, Senior Equator Research Fellow at Oxford University, has published the response she received from Committee on Publication Ethics (COPE) concerning her complaint about the Cochrane reviews on GET and CBT for ME/CFS.
Thread here

Week beginning 10th May 2021

COPE
The Committee on Publication Ethics (COPE) responded to Caroline Struthers’s concerned about how Cochrane handled two of its reviews on ME/CFS. It states: “we consider that the journal followed an adequate process and gave the concerns you raised due consideration.”
Response and Thread here
_____________

Week beginning 31st May 2021

Cochrane
Hilda Bastian, lead of the independent advisory group (IAG) on updating the Cochrane review on exercise therapy for ME/CFS has published a progress report. New members of the IAG and author team have been announced. These include well-known advocates such as Mary Dimmock, Penelope McMillan, and Jaime Seltzer. S4ME forum members, however, have raised several concerns about the new announcements.
Announcement here Thread here
_______________

Week beginning 28th June 2021

Cochrane
Hilda Bastian, Lead of the Independent Advisory Group (IAG) of the Cochrane review on exercise therapy for ME/CFS, has published a new monthly update. A ninth member of the IAG has been announced: Miranda Cumpston, senior methods editor for Cochrane Public Health. The IAG will be deciding on a tenth member in the coming weeks. Meanwhile, the author team is working on a first draft of the protocol for the review.
Article here Thread here
________________

Week beginning 2nd August 2021

Cochrane
Hilda Bastian, lead of the Independent Advisory Group (IAG) for the Cochrane review on exercise therapy for CFS, published a new update. Bastian and Cochrane’s editor-in-chief, Karla Soares-Weiser, decided to expand the IAG with an extra 11th position for a person who has recovered from ME/CFS.
Article here Thread here
_____________

Week beginning 29th November 2021

Cochrane
Caroline Struthers, Senior EQUATOR Research Fellow at Oxford University, has written to Toby Lasserson, Deputy Editor-in-Chief, Cochrane about problems with the review on exercise therapy for ME/CFS.
Article here Thread here
_______________

 

2022

Nothing in the News in Brief so far this year,
Reading back through the forum thread, there have been attempts from March onwards to find out when there might be an update, so far without success.

See these posts
March 2022
March 2022

A tweet from Hilda Bastian, confirmed by Todd Davenport, in March 2022:

March 2022 Caroline Struthers wrote to Cochrane to ask for updates and whether Cochrane reviewers would use the NICE anaysis of research.

April 2022 Cochrane replied saying 'this issue is under consideration'.

June 2022 Hilda Bastian wrote
"We're in the process of preparing an update on progress, including plans for wider consultation."

31st August 2022 Hilda Bastian replied on Twitter to a question of when the next report might be coming:
"Not this week or next week, but can't be sure when."

 

2023

Week beginning 13th March 2023

Cochrane review of exercise therapy for CFS
A new review is supposed to be in progress. An IAG (independent advisory group), led by Hilda Bastian, was appointed in May 2021 and was tasked with advising the review authors and posting monthly updates on progress on the Cochrane website.
The review author group was tasked initially with writing a protocol for the review and opening it to public consultation. According to the update in June 2021 the author group had started work on writing the protocol.
The most recent of the promised monthly updates was posted in August 2021. Since then several attempts have been made to find out what is happening, including letters to Hilda Bastian and to senior people at Cochrane.
This week Cochrane's head of communications has replied "The update is currently underway and we are hoping to publish the protocol for consultation in the coming months."
Meanwhile, the outdated review is still up on the Cochrane website.
Thread with summary of the process to date | Discussion thread

 

2023

Week beginning 20th March 2023

Trial by Error by David Tuller What the Hell is Going on with Cochrane's Long-Delayed Re-Review of "Exercise Therapies"?
A great summary about the missing progress at Cochrane concerning their review on exercise as ME treatment. "It is more than three years since Cochrane announced plans to develop this completely new review, but no one outside the organization seems to have much idea of what’s happening with that project."
Article l Thread

Cochrane
Caroline Struthers has written a complaint to Cochrane about Editor-in-Chief Karla Soares-Weiser and two avoidable and serious errors in the Exercise Therapy for Chronic Fatigue Syndrome Review that have not been corrected.
Thread

 

2023

Week beginning 28th August 2023

Cochrane Exercise therapy for ME/CFS review
The S4ME committee has sent on behalf of members an Open Letter to Karla Soares-Weiser, editor-in-chief of Cochrane, requesting:
"1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions. AND
2. An immediate restart of regular monthly updates on the new review process, with clearly stated timelines for completion of the review to publication within one year from now. OR Abandonment of the new review process."
The letter and accompanying document provide a timeline with quotes from key people at Cochrane, showing that there has been none of the promised public consultation, and none of the promised monthly updates for the last two years. Individuals and organisations are invited to add their names to the list of supporters of the letter. There is an email address for non forum members to add their names.
Thread with copies of the letter, supporting document and list of supporters including how to add your name.

Week beginning 4th September 2023

Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
Last week the Science for ME committee sent an open letter to the Editor-in-chief and other senior representatives of Cochrane requesting urgent action on the review 'Exercise therapy for CFS'. There is now a petition posted on behalf of the committee inviting people to sign in support. The number of supporters by Sunday 10th September had reached over 5,000 people from 57 countries. Over 300 added comments, many telling of their experience of long term harm from exercise therapy. Please sign and share.
Petition | Petition thread | Thread with the letter

Week beginning 11th September 2023

Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
The Science for ME petition in support of the open letter to Cochrane now has over 6000 signatures. Please sign and share.
Petition | Petition thread | Thread with the letter

Week beginning 18th September 2023

Science for ME letters to Cochrane and petition update
"On the 17 September, the forum committee sent a followup email to a substantial number of Cochrane officers and Hilda Bastian, again requesting action. It notes the establishment of this petition... It also asks the Cochrane officers to take the time to read the comments on the petition, and quotes a small selection of those comments." So far over 6800 have signed the petition, with over 400 comments, many describing long lasting harm from exercise therapy.
ME/CFS organisations from around the world are adding their support, and individual supporters are encouraged to sign the petition.
Apart from acknowledging the letters, there has been no response from Cochrane.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter

Week beginning 25th September 2023

Science for ME letters to Cochrane and petition update
Cochrane has replied - but don't get excited yet
"We wrote another open letter to Cochrane ... emphasising the need for urgent action. We have today, 30th September, received a brief reply from Cochrane..." The reply says the IAG has restarted work after a hiatus and will be reporting "in the next few weeks". "The Science for ME committee and staff will continue to support this petition and related advocacy actions until Cochrane no longer provides a platform for a poorly executed and biased review of exercise therapies for CFS or ME/CFS."
So far over 8000 people have signed the petition, with over 500 adding comments, many describing long lasting harm from exercise therapy. Over 30 organisations have signed in support of the letter.
Petition | Petition thread | Thread with the letters | Organisations supporting the letter

 

Week beginning 2nd October 2023

Petition to Cochrane Withdraw the harmful 2019 Exercise therapy for CFS review
The Science for ME petition that enables people to support Science for ME's open letters to Cochrane requesting immediate action on this review and its stalled replacement will remain open until there is no longer a review in support of GET hosted by Cochrane. The S4ME committee will continue to campaign for action by Cochrane until this issue is resolved, and encourage other ME organisations, clinicians and researchers to show their support.
Petition | Petition thread | Letter thread

Week beginning 9th October 2023

Cochrane reviews of exercise therapy for ME/CFS. On 8th October the Science for ME committee sent another letter, this time addressed to Cochrane's Chief Executive, with a set of six questions, including: "Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?" There has been no reply so far. The S4ME petition remains open.
Letter | Petition | Petition thread

Week beginning 16th October 2023

Cochrane reviews of exercise therapy for ME/CFS. The Science for ME committee has received a reply from the office of the Editor-in-Chief of Cochrane to our most recent letter. They refuse to withdraw the outdated and harmful 2019 review, and refer all other questions about the stalled new review to the IAG (independent advisory group) who have not reported or answered emails for over two years. Our petition now has over 8900 signatures, 520 comments and 7 updates. Our requests to Cochrane are supported by over 50 organisations from around the world.
Letter to Cochrane | Reply from Cochrane | Petition | Petition thread

Week beginning 23rd October 2023

Petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review - Science for ME
The petition will remain open until Cochrane no longer hosts a review that recommends exercise therapy for ME/CFS. So far over 9000 people have signed, and 58 organisations from from all over the world have signed in support of the campaign.
Petition | Petition thread | Letters and replies

Trial by Error by David Tuller
"What's Going On with Cochrane's Exercise Review Mess?"
About the current correspondence where the Science for ME Forum has urged Cochrane to retract their flawed review on exercise as ME treatment. Also on the forum's petition with over 9 000 signatures, including many organisations, endorsing the demand.
"Cochrane should remove the 2019 review now and then, as quickly as feasible, produce a new one that actually adheres to acceptable evidentiary standards. The entire episode threatens to batter Cochrane’s reputation, if it hasn’t already."
Article l Thread

Week beginning 30th October 2023

Complaints to Cochrane The Science for ME committee has submitted a five part complaint to Cochrane about the Editor-in-Chief's refusal to withdraw the 2019 review "Exercise therapy for Chronic Fatigue Syndrome", the handling of delays to the new review, and the responses to our letters. The latest update to the petition includes a summary of the complaints.
Complaint letter | Petition update | Thread

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

Science for ME complaint Cochrane has confirmed that they have received our complaint about their response to our letters. The petition remains open, with an update including the listing more organisations signing in support.
Petition | Thread

Week beginning 13th November 2023

Trial by Error by David Tuller
Cochrane Ends Silence on ME/CFS Exercise Review Developments
A writeup about the update after over two years of silence from Hilda Bastian, head of the Independent Advisory Group about the development of a new Cochrane review on exercise therapy as treatment for CFS. Tuller writes: "I am perplexed that anyone would determine that the only or least the best way to handle this difficult situation was to ghost the entire patient community for more than two years. Beyond being unacceptable, this strategy was certainly not the way to build trust and confidence in the process going forward."
Article l Thread

Science for ME complaints to Cochrane As reported in previous weeks, S4ME submitted a formal set of complaints to Cochrane about the Editor-in-Chief's dismissive responses to our requests and refusal to withdraw the 2019 review. The Cochrane Head of Governance has replied with a refusal to follow their stated complaints procedure, citing lack of resources, and stating that their decision to keep the 2019 review will not be changed.
Petition The S4ME petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" remains open, with 9500 signatures, 560 comments and regular updates. More organisations are adding their support to our letters. The campaign continues.
S4ME letters and replies | Petition update | Discussion thread

Week beginning 20th November 2023

S4ME complaints to Cochrane
On 20th November the Science for ME committee replied to Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team. The S4ME letter concludes: "Please confirm who has signed off on ignoring the complaints and the complaints procedure in this case and whether trustees have been fully informed of the issues."
The petition remains open and further individuals and organisations continue to add their support.
Letter | Petition | Thread

Week beginning 27th November 2023

S4ME complaints to Cochrane
There has been no reply yet from Lucy Johnson-Brown, Head of Governance, Cochrane Central Executive Team to the S4ME letter of 20th November.
The petition remains open and the S4ME committee are considering their next step.
Letter | Petition | Thread

 

Week beginning 18th December 2023

Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
The 18th December update to the petition reports that to date there is no reply to our letter sent a month ago to Cochrane's head of governance. "We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints."
The letter requesting withdawal is now supported by 69 organisations and the petition by over 9700 signatories. The S4ME committee intend to formally present the petition to Cochrane soon and is considering further action.
Petition | Petition update | Letter thread | Petition thread

Letter from Cochrane On 19th December the S4ME committee received a response to our letter of a month earlier in which we assumed on the basis of previous correspondence that our complaints were not being considered. In this letter, Jordi Pardo Pardo, Interim Chair. Cochrane Governing Board clarifies the position. He says that some of the points we have raised had been considered already after complaints in 2020. And concludes his letter:
"However, the other matters you have raised are under review, and we will get back to you in due course."
Thread with letter

Cochrane IAG The 20th December 2023 report from the Independent Advisory Group for the planned new review is now available online.
The IAG expects to hold a consultation on its paper on past critiques of the review early in the new year, and to report on a new editorial structure soon.
On complaints, Hilda Bastian reports: "We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future."
On IAG membership: "There is one final vacant position on the IAG. A primary consideration in filling this position will be addressing concerns expressed about a perception of bias in the makeup of the IAG." This is expected to be filled by "a medical practitioner working with patients with ME/CFS." Nominations to be sent to Hilda by the end of January.
Cochrane IAG Update | Thread

 

2024

Week beginning 15th January 2024

Cochrane petition and complaints The Science for ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' remains open and so far has nearly 10,000 supporters. We await further news from Cochrane on our complaints and on progress with the new review.
Petition | Thread

Week beginning 29th January 2024

Science for ME petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" now has over 10,000 supporters, nearly 600 of them adding comments addressed to Cochrane sharing views and experiences of harm from exercise therapy. The petition remains open while Cochrane retains a review supporting exercise therapy.
Petition | Thread

Week beginning 12th February 2024

Cochrane petition Science for ME committee has added an update, "We are still waiting", to the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review". There has been no news from Cochrane about out complaints or from Hilda Bastian about progress towards the new review since December.
Petition update | Thread

Week beginning 18th March 2024

Science for ME letter to Cochrane On 17th March the S4ME committee wrote again to key people at Cochrane about the Exercise therapy for ME/CFS review, formally presenting the 70 organisations and 10,500 petition signatories supporting withdrawal of the 2019 review. The letter set out ten reasons the review should be withdrawn on the grounds of evidence of serious harms, including the authors' failure to properly review harms evidence, and the biases and conflicts of interest of the review's advisors. An update about this letter has been added to the petition.
Letter | Petition | Petition thread

 

Week beginning 15th April 2024

Cochrane have sent a brief response to the latest Science for ME committee letter in which we presented the petition and explained why the 2019 review, Exercise therapy for CFS, should be withdrawn on the grounds of harms.
"We will include the additional points and references to studies in our review of the issues raised by S4ME in previous correspondence... some of the questions will be addressed on the Cochrane project website."
There have been no monthly updates on the new review since December 2023.
S4ME letter | Cochrane reply | Petition | Thread

Week beginning 10th June 2024

Cochrane Review: Exercise therapy for ME/CFS A new review process was announced in October 2019, intended to be completed in early 2022, with planned monthly updates from Hilda Bastian, leader of the IAG (independent advisory group). There were 3 updates in mid 2021, and two in late 2023. Hilda set up an informal 'talkpage' in late 2023 for public communication between formal updates.
We still await public consultation on the draft protocol.
Talkpage | Thread (members only)
Science for ME letters, supported now by 75 organisations worldwide and a petition with over 11,000 signatories call for the withdrawal of the 2019 review by Larun et al. Complaints to Cochrane about the handling of communications and about non withdrawal of the Larun review have not been resolved after many months, with no indication of progress or of which complaints are being addressed.
The latest petition update includes new additions of organisations adding their support, and highlights two of many broken promises:
Broken promise 1. Monthly updates from the Independent Advisory Group (IAG)
Broken promise 2. Revision of the editorial note on the 2019 Review
The petition will remain open until the 2019 review is withdrawn.
Petition | Letters thread | Petition thread

Week beginning 5th August 2024

Science for ME and Cochrane Exercise therapy for CFS review.
Nearly a year ago the Science for ME committee first wrote to Cochrane to request that the flawed and harmful Larun et al 2019 review be withdrawn. There is still no sign of progress on the new review, and no substantive response to our requests and complaints. The S4ME committee has again written to Cochrane with specific questions on progress, and deadlines by which we expect action including withdrawal of the 2019 review by 2nd October 2024, five years after publication.
Letter | Petition | Thread

Week beginning 19th August 2024

Science for ME and Cochrane
Our latest petition update covers thanks to our supporters, our latest letter to Cochrane, the broken promises continue, and the harm continues.
We have received a brief reply to our latest letter about our complaints saying they are still investigating and 'will update you as soon as possible'.
Petition update | Petition | Letter from Cochrane | Thread

Week beginning 30th September 2024

Cochrane Review Exercise therapy for CFS
It is 5 years since Cochrane published the 2019 version of the Larun et al review on 2nd October 2019, and set up a process intended to produce an updated review in two years.
There has been no substantive response from Cochrane to Science for ME letters, complaints or the petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review" which remains open. The latest petition update marks the 5th anniversary and lists 6 broken promises, including no updates on the new review since December 2023.
Petition | Petition update | Thread

 

Week beginning 16th December 2024

Cochrane announcement

Update on ‘Exercise therapy for chronic fatigue syndrome’
Announcement quoted in full:
"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. Monday, December 16, 2024"
Announcement | Thread

'New' version Cochrane has taken the unusual step of republishing the 2019 Larun et al review as a 'new' version dated 19th December 2024. The only change to the text is the addition of an editorial note which concludes:
"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."
2024 review | Thread

Hilda Bastian, appointed by Cochrane in early 2020 to lead an independent advisory group to assist the review writing group, posted on her Talkpage:
"Brief message: Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps. On behalf of the Independent Advisory Group"
Talkpage | Thread

Science for ME A few days before this news of cancellation of the updated review, Science for ME members and committee wrote to the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review.
Letter | Thread

Science for ME petition update quotes the Cochrane announcement, and adds: "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." Please keep sharing the petition.
Petition | Thread

Trial by Error by David Tuller Cochrane Tells ME/CFS Patients to Go F-k Themselves
Tuller provides a writeup of Cochrane's decision to abandon their commitment of updating their controversial review on exercise as ME treatment and concludes "Updating the review is simply not a priority. Cochrane either doesn’t want to do it, or has been pressured not to. Or perhaps both."
Article l Thread

Week beginning 23rd December 2024

Cochrane review Exercise Therapy for ME/CFS.
Science for ME petition Cochrane: Withdraw the harmful 2019/2024 Exercise therapy for CFS review
Now has over 14,000 signatories, with over 1000 signing in the week since Cochrane announced cancellation of the new review process (see last week's news)
Petition update How a review published in 2019 became a review published in 2024
"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... A 2024 publication date is particularly misleading... The literature search was undertaken in 2014 and so the review contains no source material more recent than the 2011 PACE study report."
Petition update | Petition thread | Review | Review thread

Trial by Error by David Tuller Cochrane Continues Telling ME/CFS Patients to Go F-k Themselves
On the lack of common sense behind Cochrane’s decision to abandon the update of its review on exercise as treatment for ME/CFS. "The whole mess has confirmed that Cochrane is not fit for purpose. If the organization is incapable of fulfilling its basic functions—producing reliable and accurate reviews—it is time to shut them down."
Article l Thread

 

Week beginning 30th December 2024

Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1
This part examines the first excuse given by Cochrane, a lack of resources to oversee the review, pointing out it was Cochrane that made the process overcomplicated, and much of the work has been done. "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?"
Petition | Update | Thread
_______________________

Week beginning 20th January 2025

Cochrane review Exercise Therapy for ME/CFS

As we reported in December 2024, Cochrane has cancelled the new review process and republished the 2019 review by Larun et al. as a 2024 review with the only change being an editors note announcing the cancellation. Some public responses have now been published:

Retraction Watch Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome
The article quotes our petition, Jonathan Edwards and Cochrane. Hilda Bastian is quoted: “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.”
Article | Thread

Independent Advisory Group Letter to Cochrane posted on Hilda Bastian's talkpage
"For nearly five years, we supported the project despite several lengthy unexplained delays. We were not asked for advice at key points, such as when the editorial unit received the draft protocol." The hard hitting letter goes on to criticise Cochrane's failures in all aspects of the process and its responsiblity to deal properly with outdated reviews.
Letter | Thread

PLOS Blogs - Absolutely Maybe by Hilda Bastian
When Journal, Scientific Society, and Community Values Clash
In a detailed article Hilda describes some of the background and her experiences as leader of the Independent Advisory Group.
"I considered Cochrane’s decisions and actions in three separate categories: The new/updated review project; the editorial note on the current review; and a cluster of communication and accountability issues, around dealing with criticisms, complaints, and controversies."
She concludes, saying of Cochrane: "It cannot afford to burn through social capital acquired over decades. It needs to change course. The new conflict it has created around the ME/CFS review presents it with a valuable opportunity to do so."
Article | Thread

Science for ME petition update shares the above news, and comments:
"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."
Petition update | Thread

Science for ME complaint The S4ME committee has submitted a complaint to Cochrane, outlining our previous complaints and correspondence. We show that Cochrane has not provided us with any substantive response to our previous complaints, contrary to their own complaints procedure.
Complaint | Thread

#MEAction The Year Ahead
"#MEAction is raising the alarm about Cochrane’s decision to suddenly shut down the 5-year independent analysis of its 2019 review of exercise therapy for ME/CFS... MEAction is taking action to reverse this decision."
Article | Thread

Trial by Error by David Tuller Cochrane's Decision on Exercise Review is Hurting Patients, Says Longtime Insider
About Hilda Bastian's "damning assessment" of Cochrane's decision to abandon their commitment of producing a new version of the review on exercise as treatment of ME/CFS.
Article l Thread
_____________________

Week beginning 27th January 2025

BMJ Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy - Jacqui Wise
"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 article gives a clear outline of events with opinions from Cochrane, Hilda Bastian and ending with a quote from the S4ME petition update.
Article (paywalled) | Thread with full copy

Letter to BMJ Professor Jonathan Edwards has submitted a letter to BMJ in response to the above article, headed "Advocates of the intervention launched a full-on bid to try to stop the project", a quote from Hilda Bastian (see last week's news). He concludes: "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."
Thread with copy of letter

RiffReporter ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network - Martin Rücker (translated from German)
A comprehensive article highlights ongoing pressure from exercise therapy proponents, naming Wessely, White, Sharpe and Garner. The importance of PEM in current diagnostic criteria and the harmful consequences of exercise rehabilitiation are described.
"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"
The Cochrane editor-in-chief had recently had to apologise, after much controversy, for a flawed mask review.
"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."
Article (in German) | Translation (DeepL) | Thread

Science for ME petition update More publicity Cochrane won't want to see
The petition now has over 15,000 signatories from 85 countries. This update highlights the BMJ article and social media posts by journalist George Monbiot. The second bogus reason given by Cochrane for cancelling the new review is examined under the headings 'New research isn't needed to justify a new review', and 'And there is new research'.
Petition update | Thread

Critical comments Cochrane operates a comments system allowing critical comments on the content of a review to be attached in the supplementary material of the review. These are normally addressed in any review update process.
Now that the update has been cancelled, comments from 2019 onwards remain unaddressed, yet are now labelled on the 2024 version as referring to the previous version. Michiel Tack's new comment draws attention to his detailed 2020 criticisms remaining unaddressed despite a published editor's assurance they would be.
New comments from Ann Milne and Michiel Tack address whether the fatigue outcome reaches clinical significance, and whether the evidence should be rated low or moderate. The lead author of the review has replied, but missed the point.
Review comments | Thread
______________________

 

Week beginning 3rd February 2025

The Sick Times "Really pissed off": Cochrane receives backlash from advocates and experts after abandoning ME/CFS review
Great article by David Tuller with a longer recap of the Cochrane saga. Two members of the writing team that was appointed by Cochrane to update the review provide comments:
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 concludes: ".. 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."
Article l Thread

Science for ME Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it
Trish Davis and Maree Candish, on behalf of the Science for ME committee, have submitted a detailed set of five complaints with supporting evidence. The submission concludes:
"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-opening the decision not to withdraw the 2019 review.
Complaint | Discussion thread

Trial by Error by David Tuller Professor Edwards' Letter to BMJ on the Cochrane Mess
A short recap of the latest developments concerning Cochrane's decision to abandon its update of their review on exercise therapy for ME/CFS. Also a repost of Jonathan Edwards' letter to BMJ about the same issue.
Article l Thread
___________________

Week beginning 10th February 2025

Petition The S4ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' has been running for 17 months and has over 15,700 signatories. It will remain open while the review remains.
The latest petition update, 'Significant revelations', highlights articles by journalists Martin Rücker in RiffReporter, and David Tuller in The Sick Times. It also updates on S4ME complaints. (see previous weeks' news)
Petition | Update | Thread

Letter from Cochrane On 14th February the S4ME committee received a brief response from Cochrane Complaints apologising for not responding to S4ME's previous complaints. The letter says they carried out an investigation in 2024, including looking at the NICE, CDC and German evidence reviews and their own rules.
"The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal."
Letter | Thread

Hilda Bastian, leader of the Independent Advisory Group appointed by Cochrane in 2020 to advise the group writing the now cancelled new review, has continued to take actions related to the cancellation. She has set up a page to record her public actions, including: "My open letter asking the Cochrane Board questions about transparency of governance and minutes."
Hilda's page | Thread
_________________

Week beginning 17th February 2025

Trial By Error by David Tuller A Letter to Cochrane's Editor-in-Chief
Tuller has sent a letter co-signed by 46 professionals to Dr Karla Soares-Weiser, Cochrane's editor-in-chief. The letter concerns Cochrane's decision of abandoning a planned update of their controversial review of exercise as treatment for ME/CFS. They ask for the review to be withdrawn, or at least that it's tagged with an editorial note making it clear it's out of date.
Article l Thread

Petition update Cochrane responds to our 2023 complaints
As well as a copy of the brief and unsatisfactory response to S4ME complaints, this update highlights the SciShow video and David Tuller's letter (see above items).
Petition | Update | Thread
__________________________

Week beginning 24th February

Cochrane appeal The Science for ME committee has submitted an appeal about the letter we received giving us the outcome of a complaint we submitted in January 2025 that summarised our unanswered complaints dating back to October 2023 and March 2024. We asked for copies of reports and minutes, names of those involved in the investigation and decision, and a new unbiased review of the decision not to withdraw the Larun et al review.
Appeal | Thread
______________________

 

Week beginning 3rd March 2025

Cochrane complaints
On 5th February 2025, the Science for ME committee submitted a detailed complaint headed: "Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it." Cochrane failed to provide the promised formal acknowledgment, so we resubmitted the complaint on 20th February, again unacknowledged.
On 3rd March, shortly after contacting Cochrane complaints again, we received a brief and unsigned response which gave an unsatisfactory explanation of part of the complaint: "Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review", claimed this did not breach their editorial policy, said the review "does not make any recommendations for or against exercise therapy", and declared the complaint closed.
Complaint | Cochrane's response | Thread
_________________

Week beginning 10 March 2025

The cancelled protocol for a new review
An author group was appointed in 2020 to write a new protocol and review to replace the 2019 review, Exercise Therapy for CFS by Larun et al. Cochrane announced in December 2024 that they had rejected the protocol, and cancelled the new review process.

Letter to the Cochrane Board
Two members of the author team, Mary Dimmock and Todd Davenport, have written to Dr. Susan Phillips, Chair, Cochrane Governing Board. They express their shock at Cochrane's decision, reveal the lengthy process they went through with Cochrane to agree the protocol, with four revisions, question the grounds for Cochrane's decisions, and argue that Cochrane's rules should allow the review to be withdrawn on the grounds of harm. They conclude: "Accordingly, we call on Cochrane to immediately withdraw the Larun et al ME/CFS exercise review."
Thread with letter

Letter to the ME/CFS community and consultation
Mary Dimmock and Todd Davenport also wrote a letter to the ME/CFS community.
"When Cochrane disbanded this initiative in December 2024, they told the authors they retained the rights to use the contents of the draft protocol elsewhere. The other authors have relinquished their rights and moved on. As the remaining authors, we have decided to release the final draft protocol, as submitted to Cochrane in February 2023, and to solicit public comment."
They describe the extensive work of the author group, and their shock at the announcement, adding "This risk of harm is compounded by Cochrane’s decision to revise the date of Larun et al from October 2019 (2) to December 2024".
They have made the protocol public and set up a public consultation survey.
Letters | Thread | Protocol | Survey | Thread

The Independent Advisory Group appointed by Cochrane in 2020 to advise the author group, and led by Hilda Bastian, was also disbanded by Cochrane in December 2024 with the cancellation of the new review.

Submission to The Cochrane Library Editorial Board on Policies on Outdated and Potentially Misleading Reviews
"This submission addresses three policy issues that relate to these actions:
1. Retiring outdated and misleading reviews; 2. Re-issuing an unchanged review as an apparently updated one; and 3. Unaddressed criticisms."
The submission provides a detailed analysis under each heading, quoting Cochrane's policies and editorial guidance.
"The misleading 2024 date increases the urgency of amending the editorial note to make it clear that this review is outdated and unsuitable for clinical decision-making."
Letter | Thread

Comment submitted to the The Cochrane Library Review contains outdated and misleading content, and should not be used for clinical decision-making
The content in the Larun review highlighted refers to the 2007 NICE guideline which supported exercise therapy for ME/CFS.
"The NICE guideline was updated in 2021. [2] It no longer recommends exercise as a therapy, and stresses the possibility of harm. Recommendations in other major treatment guidelines are consistent with this, including national guidelines for the US and Germany."
The comment concludes: "As the outdated content of this review is misleading about critical clinical advice and key outcomes that may influence decision-making, the editorial note should carry that same statement."
Comment | Thread
________________