S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

Following member discussions, a forum poll and discussions by forum staff and the committee, the following letter has now been sent by email to the Editor-in-chief, Karla Soares-Weiser, and copies to the Governing board, Cochrane Council, Consumer Engagement and Hilda Bastian, head of the IAG.

Links to this thread can now be shared on social media.

Due to the substantial response from supporters, people and organisations wanting to support this letter can now add their names to a change.org petition: link
The forum thread on the petition is
Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

_______________________________________


To Karla Soares-Weiser, editor in chief, Cochrane
Copies to: Cochrane's governing board, central executive team, council, editorial board, authors of the planned review, Hilda Bastian, IAG leader and IAG members.

Subject: Cochrane reviews of Exercise therapy for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)


Dear Dr Soares-Weiser,

We are writing to you to request that you take urgent action on the following. The reasons are set out below.

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.
___________________

1. The 2019 review by Larun et al.

As shown on the attached document, Dr Soares-Weiser acknowledged on 2nd October 2019 that the review 'Exercise therapy for chronic fatigue syndrome’ was already outdated at the time of its publication. Dr. Soares-Weiser announced at the same time plans for a new review which was expected to be completed in two years.

The Larun et al. review is severely flawed, as demonstrated by Michiel Tack's detailed commentary, Problems with the amended version..., published by Cochrane on 20th August 2020. Consideration of Tack's complaint was deferred on the grounds that his points would be considered as part of the new review. In his reply on 20th August 2020, John Hilton, Cochrane Senior Editor, says:
"This review and its protocol are in the process of being updated as a priority."

The findings of the Larun et al. review are incorrect, as demonstrated by the NICE and CDC evidence reviews which concluded that graded exercise therapy should not be used as treatment for ME/CFS and there is no evidence to support the use of exercise therapies in general to treat ME/CFS. Yet Larun et al continues to be cited in evidence in support of exercise therapy for ME/CFS in other guidelines and articles in medical journals and the media, leading to ineffective treatment and to serious ongoing potential for harm.

Given the above, it is clear that the 2019 review by Larun et al should never have been published and older versions should have been withdrawn or retracted. It should now be withdrawn immediately.
_________________

2. Progress on the new review:

The new review process was launched as an example of a new approach, with stakeholder involvement and engagement at its core. In May 2021 there was a promise of monthly updates. As shown in the attached document and summarised below, the process appears to have failed. There has not been even an update for two years.

Summary timeline:

2nd October 2019
Announcement of the new review process by Karla Soares Weiser
"I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

February 13, 2020
Appointment of lead to independent advisory group Hilda Bastian

May 2021
Update by Hilda Bastian
"[due to the pandemic]... it might not be possible to reach the original goal of a finalised review in early 2022. However, that is still the aim."
"there will be a new protocol. After peer review, it will be released for a very short consultation period – we hope to reach that point in the third quarter of the year [2021]."
"We will report on the project's status and progress at least monthly from now on."

June 2021
Update by Hilda Bastian
"We hope to get to that draft protocol before the end of the third quarter of the year."
The IAG was also working on a discussion document:
"The IAG will be starting an engagement process around this analysis in the coming weeks."

August 2021
Update by Hilda Bastian
"Engagement beyond the membership of the IAG will be a major focus of this project...
This will begin with the release of the list of discussion points and the accompanying discussion paper.

There have been no further updates and there has been no public consultation.

2022-3
As listed on the attached document, over the last two years there have been attempts to contact the IAG via Cochrane and via social media, with either no response, or only vague responses that the process is under way. For two years, there have been no monthly updates, none of the promised public consultation, and no information on when any progress might be expected.

This clearly unacceptable situation must not be allowed to continue.
__________

3. Impact

For readers of this letter unfamiliar with ME/CFS and its core symptom post-exertional malaise, we recommend taking a few minutes to read Pullizer Prize winning journalist Ed Yong's article Fatigue Can Shatter a Person published in July 2023 in The Atlantic. For non subscribers an archived version can be read here.

There is added urgency for action by Cochrane as many more people following Sars-COV-2 infection, likely numbering around the world in millions, are being diagnosed with ME/CFS and/or fulfill the modern diagnostic criteria for ME/CFS including post-exertional malaise (PEM). It is becoming clear from research and social media that many of those with PEM subjected to exercise therapy are being harmed, possibly permanently. Yet the 2019 Larun et al review is being used to support ongoing recommendation of exercise therapy for people with ME/CFS and Long COVID. This must not be allowed to continue.

There is also concern among scientists, clinicians and people with ME/CFS that the continued hosting of the Larun et al review by Cochrane is being used to justify articles in scientific journals and in the media and guidelines that support this outdated treatment.

It is not sufficient to have a note attached to the review saying a new review is under way, when that new review has not materialised in a timely fashion.
_____________

This letter and any replies we receive will be published on the public Science for ME forum and copied on other media and social media as we consider appropriate.

We look forward to your considered reply and swift action.

Cochrane's reputation and, more importantly, the health of millions of people, are at stake.

Yours faithfully,
the Science for ME committee, on behalf of members of the Science for ME forum,
an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us

The letter has been posted publicly, together with a list of individual signatories here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

 

Attachment to the letter
___________________________________

Part 1: The old Cochrane Exercise Review

First published 10 February 2015, revised 5 times.

Exercise therapy for chronic fatigue syndrome
Information gives the history of all reviews on this topic including the following:

October 2018
"This review is subject to an ongoing process of review and revision following the submission of a formal complaint [by the late Robert Courtney] to the Editor‐in‐Chief."

August 2019
"This published note, generated in August 2019, relates to the review version published on 2 October 2019 (doi.org/10.1002/14651858.CD003200.pub8).

In 2018, following receipt of a formal complaint about the Cochrane Review, 'Exercise therapy for chronic fatigue syndrome', the then Editor‐in‐Chief of the Cochrane Library, Dr David Tovey, commissioned an appraisal of the published review by his team. The findings of this assessment were shared with the authors in September 2018. It was judged that the authors could have an opportunity to address the complaint by amending the published review, instead of withdrawing it.

The authors submitted an amended version of the review, which was assessed further by independent editors in November 2018. Following their assessment, in December 2018 the authors were asked to make additional changes. In early 2019, the Editor‐in‐Chief and the authors jointly agreed to an extension until the end of May 2019 to address all the comments. This amended review has now been accepted for publication by Dr Karla Soares‐Weiser, who took over as Editor‐in‐Chief in June 2019."

2 October 2019 Current Version published:
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price

2 October 2019
Statement published by Cochrane on the same day as publication of the review:
Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’
"Today, Cochrane publishes an amended version of the Review. In the last nine months, this Cochrane Review has been modified by the review’s authors and evaluated by independent peer reviewers and editors. It now places more emphasis on the limited applicability of the evidence to definitions of [ME/CFS] used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.

Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, commented on the publication of the review, “Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.

We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review,..."
(See part 2 for the rest of this statement)

February 2020
Note added from the editorial team at Cochrane Editorial and Methods Department on 6 February 2020: "A statement from the Editor in Chief about this review and its planned update is available here."

26 August 2020
Problems with the amended version by Michiel Tack.
Headings:
1) ‘Long-term’ follow-up results downplayed
2) Fatigue post-treatment should be rated as low instead of moderate quality evidence
3) Problems with the Chalder Fatigue Scale
4) Bias due to lack of blinding
5) Objective outcomes not reported
6) No information on compliance
7) Indirectness of evidence: outdated diagnostic criteria
8) Reports of harm not mentioned
9) Selective reporting in the PACE trial

26 August 2020
Response from Cochrane
Note on the status of this review
John Hilton, Cochrane Senior Editor
"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. The update is being informed by an independent advisory group of people living with ME/CFS, clinicians, and researchers. 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.

Further information about the review update, and reports on progress, will be posted to the following website: https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot"
______________

The 2019 Larun et al. review has not been withdrawn as requested by many patient groups and is still being used as evidence for recommendation of graded exercise therapy (GET), despite the evidence reviews for the UK 2021 NICE guidelines and US CDC finding the research evidence does not support the use of GET as a treatment for ME/CFS, and the many reports of harm.

Examples:
2022
The Lancet: New NICE guideline on chronic fatigue syndrome: more ideology than science? - Flottorp et al.
Letter in response by Professor Jonathan Edwards

2023
Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME) - White et al
Rapid responses
Shortcomings in the commentary by White et al - Salisbury et al
______________________________________

Part 2 The new review

2nd October 2019
Announcement of the new review process by Karla Soares Weiser
"... We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. 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.”

She added, “By forging better relationships with patients, as well as the groups that represent them and the clinicians who seek to treat them, we can improve the way in which future Cochrane Reviews in this area address important questions and meet patients’ and clinicians’ needs. I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

February 13, 2020
Appointment of lead to independent advisory group
"Cochrane is now pleased to announce that Hilda Bastian has been appointed to lead the independent advisory group.
...
There will be further announcements as the independent advisory group, protocol and review update progress.

The independent advisory group can be contacted directly on cochrane.iag@gmail.com."

30th May 2020
Absolutely Maybe blog by Hilda Bastian: Let’s Be Serious About Bias in Protocols of Systematic Reviews

"But when it’s not tokenistic whitewashing, consultation can be powerful. The establishment of the Independent Advisory Group in this case is a commitment to genuine accountability and responsiveness: it provides a mechanism for establishing open discussion of the protocol, beyond the confines of peer review that’s outside public scrutiny."

Cochrane Exercise and ME/CFS Review Update: May 2021
"Summary
Like many projects planned before the pandemic, this one was deeply affected by the upheavals of 2020. As a result, it might not be possible to reach the original goal of a finalised review in early 2022. However, that is still the aim.

Progress in four areas is reported in some detail in the body of this report:

• gathering and analysing community concerns about the review as a starting point for the update, and as a framework for engaging with stakeholders;
• establishing new editorial arrangements for the review;
• recruitment of the review team, including consumer authors; and
• formation of the Independent Advisory Group (IAG).

One of the working products of the process will be a paper from the IAG that will provide a framework for consultation in the coming months.

For this updated review, there will be a new protocol. After peer review, it will be released for a very short consultation period – we hope to reach that point in the third quarter of the year. There will be opportunity for stakeholders to raise their concerns in virtual meetings, as well as in writing, before the protocol is finalised and published.
...
Although work has been progressing, this report and wider stakeholder engagement in the process is very long overdue, and I apologise for that. We will report on the project's status and progress at least monthly from now on.

The IAG will be responsible for responding to stakeholders and other interested parties, so enquiries and feedback relevant to this review will be referred to us. You can contact us directly at cochrane.IAG@gmail.com"

(Full report at link, including writing group and IAG members announced.)

Cochrane Exercise and ME/CFS Review Update: June 2021
"This month, there are updates on:

• The role of the IAG in the editorial process for the review;
• Preparing for our first consultation; and
• Membership of the IAG.

We hope to get to that draft protocol before the end of the third quarter of the year. However, with so many groups of people and feedback loops involved, it’s hard to be sure how quickly this will go.

• The authors are working on the protocol – and the IAG will be providing advice along the way, including about the first draft before peer review.

• When the final protocol is published, comments can be submitted to The Cochrane Library – and plans will be developed for further progress.

If there are differences between the review team and the IAG that can’t be resolved between them, the final decision on that issue will be made by the Editor-in-Chief.

Preparations for our first consultation: the critique story so far

Last report, I explained that our starting point had been the critiques of the review made from 2008 to 2020, and a content analysis of the issues raised in them...

The discussion points have been summarised into very brief descriptions, and there are over 100 of these now. The IAG will be starting an engagement process around this analysis in the coming weeks.

We will be seeking input on whether those summaries cover all the aspects of the Cochrane review that stakeholders want to raise. And it will introduce the community to the way we’ll be using this framework through the editorial process, so people can see how new issues can get on the agenda as the review develops.

This first IAG document will be the start of a series of efforts that we hope will facilitate engagement with the draft protocol when it comes in the next few months...."

Cochrane Exercise and ME/CFS Review Update: July 2021
Posted online: 4 August 2021

"This month, there are updates on:

• Progress on developing the first document for consultation, including comparing the methods of major recent reviews by other groups;
• Membership of the IAG; and
• Developing processes and policies for consultation and engagement.

Alongside this process, we have been working on a technical document comparing the specific methods used in the current version of the Cochrane review and the draft systematic reviews released by National Institute for Health and Care Excellence (NICE) in the UK and the Centers for Disease Control and Prevention (CDC) in the US.
We will be considering whether including the relevant segments of this comparison provide useful context within the discussion paper, too. As we get closer to the consultation on the draft protocol for the update of the Cochrane review, seeing the similarities and areas of difference between the methods chosen by different groups of systematic reviewers may be useful to many people.

Processes and policies for consultation and engagement
Engagement beyond the membership of the IAG will be a major focus of this project. This will include a range of opportunities for participation. A key focus will be consultations, the first of which will focus on the discussion paper built on criticisms of the Cochrane review since 2008.

This will begin with the release of the list of discussion points and the accompanying discussion paper. The IAG will be testing out a process for online submission of comments shortly, as well as discussing additional options for engagement around this process.

We will also be developing a policy for the IAG on engagement broadly, covering aspects typically addressed by policies people develop, for example, to moderate discussion forums, or to run consultations for public agencies."
______________________

There has been no information posted on the Cochrane website since the above report from Hilda Bastian on 4th August 2021. All attempts to elicit responses via the IAG email address have been unsuccessful.

During 2022 several attempts were made via social media. Those we are aware of are as follows:
March 2022
Cochrane was asked and said an update is expected but they can't give a date.

March 2022
From Cochrane in response to a query:
"...apologies for the lack of information on the exercise therapy for ME/CFS. We are planning to send an update about the status of the review and plans for the next steps, but the timing of the communication has yet to be confirmed. We will ensure it is shared with the ExerciseForMe-CFSUpdates subscribers."

March 13 2022
Hilda Bastian on Twitter;
"It has been moving forward: lack of progress reports does not necessarily mean lack of review progress - these involve different groups of people."

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."

31 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

17 March 2023 in response to an email sent to the press office:
"Thank you for getting in touch. The update is currently underway and we are hoping to publish the protocol for consultation in the coming months. Unfortunately I am not in a position to be more specific at this stage but would be happy to update you once the protocol is published.
Harry Dayantis
Head of Communications
Cochrane Central Executive Team"

August 2023
By private communication:
"the draft protocol was submitted in February [2023] and ... the IAG took on responsibility at that time".
___________________

 

Organisations supporting the letter

International
Science for ME

ME Global Chronicle

World ME Alliance

Physios for ME


Europe
Hope 4 ME & Fibro Northern Ireland, Board of Trustees

ME Centraal, the Dutch ME-info channel

Bury/Bolton ME/CFS & Fibromyalgia Support Group, UK

Millions Missing France

German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V.

European ME Coalition (EMEC)

Millions Missing Stavanger (Norway)

Norwegian ME-Association

Norwegian ME-association Trøndelag

Norwegian ME-association Rogaland

Norwegian ME-association Møre and Romsdal

Norwegian ME-association Innlandet

25% ME Group (United Kingdom)

ME Foreldrene (ME Parents, Norway)

12ME (Belgium)

Welsh Association of ME & CFS Support (WAMES)

ME Association (United Kingdom)

ME Advocates Ireland (MEAI)

Action for M.E. (United Kingdom)


Americas
Millions Missing Canada


Asia and Oceania
Post Viral Research Aotearoa (New Zealand)

ANZMES (New Zealand)


Middle East and Africa
ME/CFS Israel



Individuals supporting this letter
Most of the people listed below indicated support for the letter prior to the set up of the petition.

For more names of people and organisations supporting the letter, see Change.org Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review, currently with over 5,600 signatures.


Trish Davis, Science for ME staff member, ME/CFS for 33 years, carer for 25 years, UK

Maree Candish, Science for ME committee member, New Zealand

Dr Adrian Baldwin, Science for ME committee member, UK

SBM Kirby, Australia

John Peters

Richard Vallée, ME/CFS for 15 years

Peter Trewhitt MA, MSc, Dip Cl Com St, MRCSLT (retired), UK

Gregory Sanders, England, UK

Vivien Pomfrey, MSc, UK

Gillian Bigglestone, MSc, UK

Dr Olivia Beatty MD MRCP, UK

Ann West, UK

Ash, UK

Susan Spaulding, retired RN, United States

David Davies-Payne, MB ChB, FRANZCR, Starship Children's Hospital, Auckland, New Zealand

Callum Nicholls, New Zealand

Laurie Pelis, USA

Ágnes Szarvas, Hungary

Sarah Restieaux

Astrid Meyer-Knutsen, Norway

Dominique Doran, New Zealand

Dr Caroline Mary Mann, MBChB, MRCS, FANZCA, MMEd, Specialist Anaesthetist,
Starship Children's Hospital, Auckland, NZ

Sally Burch. BSc (hons) Biology, Lay member on NICE guideline committee for ME/CFS. Northern Ireland.

Veronica Jones, England, Severe ME patient since 1997

Susanne Bressan, Person severely disabled by ME/CFS, Germany

Mrs. Joan McParland MBE, Founder, Hope 4 ME & Fibro Northern Ireland

Lene Christiansen, me/cfs for 24 years

Linda Campbell, MSc Nursing, Advanced Nurse Practitioner Primary Care, Chair and Healthcare Professional Educational Advisor for Charity Hope 4 ME & Fibro NI.

Ian Johnson, England, Moderate/severe ME patient since 1986

Rob Wijbenga, The Netherlands, co-founder/editor-in-chief of the ME Global Chronicle and co/founder, admin & moderator of the Dutch ME-info channel ME Centraal.

Lucy A Bailey MSc, UK

Maria Sale, ME/CFS for 32 years

Kitty Parker

Francis Martin

Lidia Thompson BSc, PGCE, ME/CFS for 35 years

Professor Dr Jonas Bergquist, Director ME/CFS Research Centre, Uppsala University, Sweden

Simone Eyssens, former psychologist, lives with severe ME/CFS, Australia

Shannon Clem, patient, USA

Louise Skelley

Eric Topol, MD, Professor and EVP, Scripps Research

Timothy Chambers, Australia

Svetoslav Batsoev, Bulgaria

Dr Belinda Rowland, (BMedSc, BMBS, DCH, FRACGP), Australia

Simon Del Favero, Australia

Danilo Buonsenso, MD, PhD, Fondazione Policlinico Universitario A. Gemelli, Italy

Elisa Josefa Oltra Garcia

Anatol, ME/CFS patient

Barbara Lees

Stephen Walden, USA

Sissel Sunde, MillionsMissing Stavanger, Norway

Nina E. Steinkopf, www.melivet.com

Randi Line Finnes, Norway

Tine Omforlades

Gunhild Bay, Patient, Norway

Lena Kjempengren-Vold

Jorn T Haugen

Venke Midtlien

Hege Hansen, ME for 11 years

Kaja Heilo, Norway

Heidi Anita Hervik

Herberto Dhanis, biomedical engineer with a PhD in neuroscience

Anette Gilje

Susanna Agardy, Australia

Heidi Borresen, Norway

Marit Stafseth

Kari Cotton

Elen Lovis Nornes

Anita Saur Haukvik

Ingegjerd Arnes

Cathrine Kjeilen Nygaard

Kathrin Storheil, Norway

Aslaug Angelsen, RD, MSc, Norway

Henrik A. Sve, MA, Norway

Daniel Missailidis, PhD (ME/CFS biomedical research scientist for 8 years)

Marit Wohni

Heidi Hansen

Harald Krisner, Norway

Marjon Wormgoor, Norway

Grete Lilledalen

Anne-Cathrine Rodriguez, Norway

Peter la Cour, Health psychologist, professor, Denmark

Mari Anne van der Pool

Claudia Heath, Carer for my son with M.E., Australia

Dr Carolyn Wilshire, School of Psychology, Te Herenga Wake - Victoria University of Wellington, New Zealand

Kristin Lyslo Pedersen

Renate Øvreseth, Registered Nurse and Midwife, now ME patient, Norway

Froydis Lilledalen ME-patient, writer and psychologist

Karen Stevenson, Diagnosed CFS and Fibromyalgia, USA

Michelle Strausbaugh, Portland, OR USA, patient 22 years

Gilles, France

Tanja Mediaa

Jackie Goold, UK

Knut Hillers

Robert Saunders, UK ME/CFS patient for 31 years.

Dr Nicholas Mann, MD, FRCP, FRCPCH, DCH, retired consultant paediatrician, Royal Berkshire Hospital, UK

Elizabeth Edwards, Person with ME/CFS for 50 years +, Australia

 

Thanks
The forum committee acknowledges the considerable effort made by @Trish in drafting the letter and by forum staff in general in facilitating this advocacy effort. We would also like to thank the many members who have added their support to the letter and who have encouraged others to also add their names.


A new and better way to indicate your support for the letter - a Change.org petition
In response to the considerable expression of support, we have created a Change.org petition where people can add their names and the names of organisations directly. The link is here
Change.org Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
Please consider adding your name to the petition, even if you have already added your name to this thread. Please share the link and encourage others to add their names if you can. (If we receive further emails from people wanting to add their names in support, we will add them to the post above.)

Number of people who have signed the petition as of 12 September 2023: 5600


Response from Cochrane
Science for ME has received several emails from Cochrane personnel acknowledging receipt of the letter. We have, however, not yet received any substantive reply. We will keep you informed.

 

As of today (18 September 2023), Science for ME has still not received any response from Cochrane other than acknowledgement of receipt.

On the 17 September, the forum committee sent the following followup email to a substantial number of Cochrane officers and Hilda Bastian. It notes the establishment of the petition.

************************

Dear ...

We request your assistance in ensuring prompt action is taken by Cochrane on the serious issues related to its reviews of exercise therapy for the disease that has been known as chronic fatigue syndrome (CFS) and is now referred to as ME/CFS.

On 31st August 2023, the committee of the international Science for ME forum sent an open letter to the Cochrane Editor-in-Chief, Dr Karla Soares-Weiser. If you have not seen it, we ask you to read the letter and attached document, both posted on the forum.

On 4th September 2023, the forum committee set up a Change.org petition to enable the many people who wished to support the open letter to add their names.

The petition says:

"Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

This petition has been posted on behalf of the committee of the international Science for ME forum:

People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.

Cochrane is an international organisation that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published 'Exercise therapy for CFS', supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).

Cochrane's editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK's NICE (NG206: 1.11.14) and the USA's CDC having found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.

Also in October 2019, the Cochrane editor-in-chief promised to commission a new review with the process to be a pilot of a new approach, involving an independent advisory group and public consultation. The aim was to complete it in two years. In 2023, not even the first step, a review protocol, has been agreed. There has been no public consultation and none of the promised monthly updates since August 2021.

The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS. Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.

The committee and members of the international Science for ME forum have written to 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 has been posted here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

Please sign this petition to call on Cochrane for action.

The Committee of the Science for ME international forum"
_________________

Some people with ME/CFS or Long Covid, or their carers, have added comments. We hope you will take the time to read all the comments. Here is a small sample:

Laura Stevens
My daughter became ill with ME following glandular fever when she was 9 years old. Knowing no better and on medical advice we forced her to increase activity (GET). She became progressively sicker and I will always carry the guilt of this.

Femke van Hellenberg
This therapie harmed our daughter. Before she could go to school after this therapie she was bed and house bounded.

Anne Brown
I have seen how exercise therapy set my son back, with ME symptoms increasing and lasting longer. I believe if medical advice had been more appropriate and he had been encouraged to properly rest and recuperate he would not have become as poorly as he did and the illness might not still be with him 10 years on. The lived experience of ME/CFS sufferers needs to be listened to and drawn on, and this illness taken seriously.

Sasha Ripley
I was starting to recover about 6 months after getting covid and my doctors all insisted I start exercising again. I followed their advice and became extremely sick and have now been sick and disabled for 1 1/2 years

P J
My health was irreparably damaged by exercise therapy administered by a physiotherapist who was following NHS / NICE guidelines that recommended GET at the time. I am now mostly horizontally bound and relying on a wheelchair to move from bed to other rooms in my home. I am unable to go out, work, enjoy hobbies, or participate in my family and friends' lives. For 15 years now. I went from moderately ill to severely ill just by pushing myself under the instructions of a professional I trusted had my health at heart.
How many more of us need to have our lives destroyed before scientists and medical professionals stand up for actual science?

Jenny Meagher
I was harmed by graded exercise therapy. After GET, my ME became more severe and I could no longer work.

Joelline GIROUARD
As a person who was irreversably harmed by attempting to increase my activity levels despite my body's signals to stop, I feel very strongly that no form or increase of activity should ever be forced on a sufferer of ME/CFS and now the fatigue-dominant presentation of long COVID.
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We look forward to swift action to remedy this untenable situation.
As we said in our initial letter on 31st August: "Cochrane's reputation and, more importantly, the health of millions of people, are at stake."

This letter and any replies we receive will be published on the public Science for ME forum and copied on other media and social media as we consider appropriate.

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