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Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
- Thread starter Hutan
- Start date
Ash
Senior Member (Voting Rights)
Yes. Friends in high places. But far fewer than before or Cochrane would not be in the difficulties it finds itself in now.
It seems like someone in a position of authority at Cochrane must of signed off on the decision to refuse our complaint entirely, rather than going for the more traditional route of tick box processing spread out over the longest possible period in order to keep us waiting and ultimately disappoint us. This relatively prompt punch to our impudent faces isn’t quite what I expected.
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Andy
Retired committee member
Karl Morten? Caroline Struthers?
Suffolkres
Senior Member (Voting Rights)
I was thinking more of Professor Sharpe..
Forgive my ignorance but I thought Karl was at the Nuffield and the University?
Is this the same as NHS Oxford Hospitals Foundation Trust? Or is it separate?
The NHS FT cites Michael Sparke in their consultant list but not Karl Morton or Caroline.
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Andy
Retired committee member
All your post says is Oxford - Karl is in Oxford.
Some posts have been moved to News from Cochrane
Please try to keep posts relevant to the thread topic.
Please try to keep posts relevant to the thread topic.
Thanks to Grupa Wsparcia ME/CFS from Poland for being the latest signatory and to @Mike Harley for help.
Andy
Retired committee member
9,552 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Takk til ME Foreningen Østfold for supporting the petition!
Andy
Retired committee member
9,561 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Many thanks to two ME/CFS research foundations who have added their names to the list of organisations supporting the open letter:
- ME/CFS Research Foundation gGMBH in Germany
- WE&ME Foundation in Austria
Andy
Retired committee member
9,584 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Andy
Retired committee member
9,601 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
The Schweizerische Gesellschaft fur ME said they would cover the petition in their December newsletter
Andy
Retired committee member
9,661 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
PETITION UPDATE
December update
DEC 18, 2023
The day after our last petition update, the S4ME committee sent a letter to the Head of Governance, Cochrane Central Executive Team. You can find the letter here.
In it, we queried Cochrane's earlier letter where they said first, that they were committed to responding to complaints appropriately, and then, made it clear that they would not be following their published complaints procedure for our complaints.
We noted the substantial reputational risk that Cochrane runs in continuing to provide a platform for a review that it has acknowledged is flawed, in not acting in a timely manner in the production of a promised replacement review and in continuing to ignore the opinions of so many consumer organisations that the advice the review provides causes harm.
We noted the double standards, where Cochrane spent over a year investigating a complaint from, presumably, a relatively small group of people who don't want the 2019 Larun review to be replaced. This extensive investigation is reported by Hilda Bastian to have significantly delayed the replacement review and, it appears, has resulted in concessions including more representation of the pro-GET lobby on the "Independent Advisory Group" of the new review.
We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints. We noted that this would surely be required, given that the complaints were against the actions of senior management, and also given the reputational risks. It would be very odd if it was thought acceptable for a complaint against a Cochrane officer to be evaluated only by that officer.
We have not yet received a reply.
______________
The S4ME committee is considering what action to take next.
We intend sometime soon to formally present the petition to the Cochrane trustees, highlighting in doing so the many comments by petitioners, and the names of the organisations supporting this campaign. If we take our complaint to COPE or the UK charity commission, that may need to be done with some level of confidentiality in order to comply with their rules.
Thank you again to all the individuals who have signed the petition, added your own testimony to the harm exercise therapy has caused to you or your loved ones, and spread the word about the petition to others with ME/CFS and Long COVID and their supporters. Please keep doing so.
Thank you also to the many organisations who have signed in support. Do please get in touch with the S4ME team on moderators@s4me.info if your organisation wants to sign or has other ideas of ways to help.
Thank you to the following organisations for adding their names in support of the open letter here bringing the total number of organisations to 69, and, with organisations from Poland and Austria, the number of countries represented to 24.
Grupa Wsparcia ME/CFS, Poland
Norwegian ME Association, Østfold region
ME/CFS Research Foundation gGmbH, Germany
WE&ME Foundation, Austria
While Cochrane still hosts a review that recommends exercise as therapy for ME/CFS, the harm continues, so the fight for health and justice must continue too.
_____________
We hope that, as this year draws to an end, you have loved ones close and that the new year brings us all peace, joy, good science and compassion.
Best wishes, the Science for ME team
_____________
December update
DEC 18, 2023
The day after our last petition update, the S4ME committee sent a letter to the Head of Governance, Cochrane Central Executive Team. You can find the letter here.
In it, we queried Cochrane's earlier letter where they said first, that they were committed to responding to complaints appropriately, and then, made it clear that they would not be following their published complaints procedure for our complaints.
We noted the substantial reputational risk that Cochrane runs in continuing to provide a platform for a review that it has acknowledged is flawed, in not acting in a timely manner in the production of a promised replacement review and in continuing to ignore the opinions of so many consumer organisations that the advice the review provides causes harm.
We noted the double standards, where Cochrane spent over a year investigating a complaint from, presumably, a relatively small group of people who don't want the 2019 Larun review to be replaced. This extensive investigation is reported by Hilda Bastian to have significantly delayed the replacement review and, it appears, has resulted in concessions including more representation of the pro-GET lobby on the "Independent Advisory Group" of the new review.
We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints. We noted that this would surely be required, given that the complaints were against the actions of senior management, and also given the reputational risks. It would be very odd if it was thought acceptable for a complaint against a Cochrane officer to be evaluated only by that officer.
We have not yet received a reply.
______________
The S4ME committee is considering what action to take next.
We intend sometime soon to formally present the petition to the Cochrane trustees, highlighting in doing so the many comments by petitioners, and the names of the organisations supporting this campaign. If we take our complaint to COPE or the UK charity commission, that may need to be done with some level of confidentiality in order to comply with their rules.
Thank you again to all the individuals who have signed the petition, added your own testimony to the harm exercise therapy has caused to you or your loved ones, and spread the word about the petition to others with ME/CFS and Long COVID and their supporters. Please keep doing so.
Thank you also to the many organisations who have signed in support. Do please get in touch with the S4ME team on moderators@s4me.info if your organisation wants to sign or has other ideas of ways to help.
Thank you to the following organisations for adding their names in support of the open letter here bringing the total number of organisations to 69, and, with organisations from Poland and Austria, the number of countries represented to 24.
Grupa Wsparcia ME/CFS, Poland
Norwegian ME Association, Østfold region
ME/CFS Research Foundation gGmbH, Germany
WE&ME Foundation, Austria
While Cochrane still hosts a review that recommends exercise as therapy for ME/CFS, the harm continues, so the fight for health and justice must continue too.
_____________
We hope that, as this year draws to an end, you have loved ones close and that the new year brings us all peace, joy, good science and compassion.
Best wishes, the Science for ME team
_____________
Andy
Retired committee member
9,720 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Andy
Retired committee member
9,768 signatures at time of posting.
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Science For ME
Forum Announcements
The committee received the following email from Cochrane on Tuesday 19th December, posted on the open letter thread, and also here for comments:
______________
Dear Trish Davis and the Committee of Science for ME international forum,
Thank you for your correspondence, which has been referred to me.
We are committed to taking complaints seriously, and to following Cochrane's established processes and procedures. [1] For example, as we note on our website, [2] previous complaints on some of the issues you have raised were also made in 2020. Those were investigated by a sub-group of Cochrane’s Editorial Board and a Cochrane Coordinating Editor, who agreed that the published review did not warrant withdrawal based on those complaints.
Our procedures can involve referring complaints within the organization, for example, to our conflicts of interest panel. This depends on the matters raised within the complaints, not on who made the complaint.
We regret the lengthy delays to this project. As indicated in Hilda Bastian’s November report, [3] the next steps for this review are currently in planning. When there is a timetable and further details, this will be included in public updates. As also reported, since the review process will take some time, Cochrane will be working with the Independent Advisory Group on a revised editorial note with the aim of reducing the chances of misinterpreting the current review.
The Cochrane Governing Board is informed about developments relating to this review. I recognize that this email does not address the concerns and complaints you have sent in previous correspondence. However, the other matters you have raised are under review, and we will get back to you in due course.
Kind regards,
Jordi Pardo Pardo
Interim Chair. Cochrane Governing Board.
________________
______________
Dear Trish Davis and the Committee of Science for ME international forum,
Thank you for your correspondence, which has been referred to me.
We are committed to taking complaints seriously, and to following Cochrane's established processes and procedures. [1] For example, as we note on our website, [2] previous complaints on some of the issues you have raised were also made in 2020. Those were investigated by a sub-group of Cochrane’s Editorial Board and a Cochrane Coordinating Editor, who agreed that the published review did not warrant withdrawal based on those complaints.
Our procedures can involve referring complaints within the organization, for example, to our conflicts of interest panel. This depends on the matters raised within the complaints, not on who made the complaint.
We regret the lengthy delays to this project. As indicated in Hilda Bastian’s November report, [3] the next steps for this review are currently in planning. When there is a timetable and further details, this will be included in public updates. As also reported, since the review process will take some time, Cochrane will be working with the Independent Advisory Group on a revised editorial note with the aim of reducing the chances of misinterpreting the current review.
The Cochrane Governing Board is informed about developments relating to this review. I recognize that this email does not address the concerns and complaints you have sent in previous correspondence. However, the other matters you have raised are under review, and we will get back to you in due course.
Kind regards,
Jordi Pardo Pardo
Interim Chair. Cochrane Governing Board.
________________