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.

 

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 In her blog, Bastian suggests that it would have been reasonable to have the review withdrawn at the time of negotiations.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
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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
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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
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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
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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
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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
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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
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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
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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