Science For ME
Forum Announcements
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acknowledged on 2nd October 2019 that the review 'Exercise therapy for chronic fatigue syndrome’ was already outdated at the time of its publication.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
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
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