Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Hi all just a reminder as we come up to two months of the petition being live that if you’ve shared it on social media or in any groups it is a good idea to post it again as algorithms often mean that people who follow you don’t necessarily pick up posts in their feeds.
 
Today the Science for ME Committee sent a letter of complaint to the Cochrane Complaint email address covering five specific complaints. It has been posted here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

We have also posted an update on the petition which summarises the letter of complaint and notes that another 5 organisations have added their support to the campaign. The update is copied here:

****************
Petition update
30 October 2023

We have sent formal complaints to Cochrane

Cochrane has a system whereby complaints, defined as 'an expression of unhappiness about a failure of process or an important misjudgement' are accepted and are responded to.

Today, the Science for ME committee sent formal complaints to Cochrane. The document can be found here [link] and covers the following topics:

___________________

Complaint A: A failure of process - no removal of an outdated and incorrect review in the time frame promised.

We linked to the Editor-in-Chief's own statement that made clear that the 2019 review was to only stay in place for two years, when it would be replaced by an updated review.
___________________

Complaint B: A failure of process - failure to follow normal procedure on a critical comment

Cochrane has a facility where comments can be posted about reviews. In August 2020 Michiel Tack notified Cochrane of nine major problems with the Larun et al 2019 review. A Cochrane Senior Editor acknowledged the comment, saying that the review was 'in the process of being updated as a priority'. Lack of progress on the new review leaves the nine problems unaddressed for over 3 years to date, and the flawed review in place unchanged.
___________________

Complaint C: A failure of process - failure to take effective action for over two years by the Editor-in-Chief on the stalled new review process.

Cochrane set up the process for the new protocol and review in early 2020 with planned publication of the new review in early 2022. We spell out the two years of broken promises on regular updates, public consultation and the lack of response from the IAG email address. Cochrane managers have failed to intervene effectively, or possibly at all, to set the process back on track.
___________________

Complaint D: A failure of process - the Editor-in-Chief's failure to address serious concerns from the public, and passing them, inappropriately, to the IAG that has no power to act on our requests, and has a non functioning email address.

We inform the complaints department of our letters to Cochrane starting on 28th August 2023, this petition, and the brief and unsatisfactory replies from the office of the Editor-in-Chief. We point out that redirecting our concerns to the IAG is wholly inappropriate, since the IAG is not responding to any correspondence, and has no power over what happens to the 2019 review. We conclude that Dr Soares-Weiser, the Editor-in-Chief's unwillingness to take responsibility is a major failure of process and judgement.
___________________

Complaint E: An important policy misjudgement - making the withdrawal of the 2019 review contingent on the publication of a new review.

We cannot accept the Editor-in-Chief's judgement that the question of withdrawal of the 2019 review is closed four years after its temporary publication when circumstances have changed. We highlight more up-to-date evidence reviews by NICE and the CDC which do not support the conclusions of the 2019 Cochrane review, and spell out harms from the review remaining. We say that failure of the process to produce the new review should not be used as a delaying tactic to keep the old review in place. We asked Cochrane to consider in whose interests it is to keep the outdated review? Clearly it is not in the interests of science or patients.
___________________

We noted that if the IAG resumes its regular updates in the next few weeks, that will not resolve any of our complaints, since the process of completing and taking the new review to publication, if it ever happens, will take many more months, if not years, while the old review remains and continues to harm people with ME/CFS.

We will keep you updated about Cochrane's response.

THANKS

Thank you very much to Trish Davis for her great work putting the complaints document together.

Thank you also to the five organisations who have added their names to the now 59 organisations who are supporting the campaign since the last update. You can find the full list here [ https://www.s4me.info/threads/s4me-...fs-exercise-therapy-review.34973/#post-491234]. If an organisation you are associated with isn't listed there, please ask them to add their name - they can contact us at moderators@s4me.info.

RME Jönköping - Sweden [https://rme.nu/rme-regionforeningar/rme-jonkoping/]

ONG PEM - Spain [https://www.ongpem.org/]

ME Support New Zealand [https://www.mesupport.org.nz/]

LocalME [https://groups.io/g/LocalME]- comprises 52 local support and advocacy groups across the UK as well as outside UK

MillionsMissingHolland [https://www.facebook.com/MillionsMissingHolland/]

Thank you also to David Tuller for his coverage of the campaign [https://virology.ws/2023/10/28/trial-by-error-whats-going-on-with-cochranes-exercise-review-mess/] and to everyone who has signed and shared the petition.

The Science for ME committee
 
Thank you yet again to all who have put in the hard work to try to force progress on something Cochrane have been failing to adequately address for a decade now. Given the Editor in Chief’s current refusal now to even take any responsibility for the failure to progress her own promises of 2020 this must feel like banging your heads against a brick wall.

Generally as a forum we are collectively very aware of what is happening across the ME/CFS world, so I can only assume that this lock down on any information out Cochrane about what has and what is currently happening in relation to the exercise review is a deliberate policy. It appears that Cochrane is strongly resistant to withdrawing the 2019 exercise review, despite their recognition that this update was seriously flawed at the time it was published, and despite the American CDC and the UK’s NICE now drawing the opposite conclusion from their own evidence reviews. This leaves us with the question what on Earth is going on behind Cochrane’s closed doors.

This is such an important issue given researchers, clinicians and service planners continue to cite this flawed review to recommend an intervention known to harm people with ME/CFS and now being seen to harm those with Long Covid who also experience Post Exertional Malaise.
 
Peter Trewhitt said:
Thank you yet again to all who have put in the hard work to try to force progress on something Cochrane have been failing to adequately address for a decade now. Given the Editor in Chief’s current refusal now to even take any responsibility for the failure to progress her own promises of 2020 this must feel like banging your heads against a brick wall.

Generally as a forum we are collectively very aware of what is happening across the ME/CFS world, so I can only assume that this lock down on any information out Cochrane about what has and what is currently happening in relation to the exercise review is a deliberate policy. It appears that Cochrane is strongly resistant to withdrawing the 2019 exercise review, despite their recognition that this update was seriously flawed at the time it was published, and despite the American CDC and the UK’s NICE now drawing the opposite conclusion from their own evidence reviews. This leaves us with the question what on Earth is going on behind Cochrane’s closed doors.

This is such an important issue given researchers, clinicians and service planners continue to cite this flawed review to recommend an intervention known to harm people with ME/CFS and now being seen to harm those with Long Covid who also experience Post Exertional Malaise.
Click to expand...
I could not agree more Peter.
 
Science For ME said:
Today the Science for ME Committee sent a letter of complaint to the Cochrane Complaint email address covering five specific complaints. It has been posted here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

We have also posted an update on the petition which summarises the letter of complaint and notes that another 5 organisations have added their support to the campaign. The update is copied here:

****************
Petition update
30 October 2023

We have sent formal complaints to Cochrane

Cochrane has a system whereby complaints, defined as 'an expression of unhappiness about a failure of process or an important misjudgement' are accepted and are responded to.

Today, the Science for ME committee sent formal complaints to Cochrane. The document can be found here [link] and covers the following topics:

___________________

Complaint A: A failure of process - no removal of an outdated and incorrect review in the time frame promised.

We linked to the Editor-in-Chief's own statement that made clear that the 2019 review was to only stay in place for two years, when it would be replaced by an updated review.
___________________

Complaint B: A failure of process - failure to follow normal procedure on a critical comment

Cochrane has a facility where comments can be posted about reviews. In August 2020 Michiel Tack notified Cochrane of nine major problems with the Larun et al 2019 review. A Cochrane Senior Editor acknowledged the comment, saying that the review was 'in the process of being updated as a priority'. Lack of progress on the new review leaves the nine problems unaddressed for over 3 years to date, and the flawed review in place unchanged.
___________________

Complaint C: A failure of process - failure to take effective action for over two years by the Editor-in-Chief on the stalled new review process.

Cochrane set up the process for the new protocol and review in early 2020 with planned publication of the new review in early 2022. We spell out the two years of broken promises on regular updates, public consultation and the lack of response from the IAG email address. Cochrane managers have failed to intervene effectively, or possibly at all, to set the process back on track.
___________________

Complaint D: A failure of process - the Editor-in-Chief's failure to address serious concerns from the public, and passing them, inappropriately, to the IAG that has no power to act on our requests, and has a non functioning email address.

We inform the complaints department of our letters to Cochrane starting on 28th August 2023, this petition, and the brief and unsatisfactory replies from the office of the Editor-in-Chief. We point out that redirecting our concerns to the IAG is wholly inappropriate, since the IAG is not responding to any correspondence, and has no power over what happens to the 2019 review. We conclude that Dr Soares-Weiser, the Editor-in-Chief's unwillingness to take responsibility is a major failure of process and judgement.
___________________

Complaint E: An important policy misjudgement - making the withdrawal of the 2019 review contingent on the publication of a new review.

We cannot accept the Editor-in-Chief's judgement that the question of withdrawal of the 2019 review is closed four years after its temporary publication when circumstances have changed. We highlight more up-to-date evidence reviews by NICE and the CDC which do not support the conclusions of the 2019 Cochrane review, and spell out harms from the review remaining. We say that failure of the process to produce the new review should not be used as a delaying tactic to keep the old review in place. We asked Cochrane to consider in whose interests it is to keep the outdated review? Clearly it is not in the interests of science or patients.
___________________

We noted that if the IAG resumes its regular updates in the next few weeks, that will not resolve any of our complaints, since the process of completing and taking the new review to publication, if it ever happens, will take many more months, if not years, while the old review remains and continues to harm people with ME/CFS.

We will keep you updated about Cochrane's response.

THANKS

Thank you very much to Trish Davis for her great work putting the complaints document together.

Thank you also to the five organisations who have added their names to the now 59 organisations who are supporting the campaign since the last update. You can find the full list here [ https://www.s4me.info/threads/s4me-...fs-exercise-therapy-review.34973/#post-491234]. If an organisation you are associated with isn't listed there, please ask them to add their name - they can contact us at moderators@s4me.info.

RME Jönköping - Sweden [https://rme.nu/rme-regionforeningar/rme-jonkoping/]

ONG PEM - Spain [https://www.ongpem.org/]

ME Support New Zealand [https://www.mesupport.org.nz/]

LocalME [https://groups.io/g/LocalME]- comprises 52 local support and advocacy groups across the UK as well as outside UK

MillionsMissingHolland [https://www.facebook.com/MillionsMissingHolland/]

Thank you also to David Tuller for his coverage of the campaign [https://virology.ws/2023/10/28/trial-by-error-whats-going-on-with-cochranes-exercise-review-mess/] and to everyone who has signed and shared the petition.

The Science for ME committee
Click to expand...

Perfect thanks so much @Trish for expressing this all so clearly.
 
Great to have CFS/ME Associazione Italiana joining the campaign - the first Italian organisation to sign as a supporter. Grazie, Giada Da Ros.

Thanks also to Sian at the World ME Alliance for her ongoing help to promote the campaign and to connect people.
 
Peter Trewhitt said:
Thank you yet again to all who have put in the hard work to try to force progress on something Cochrane have been failing to adequately address for a decade now. Given the Editor in Chief’s current refusal now to even take any responsibility for the failure to progress her own promises of 2020 this must feel like banging your heads against a brick wall.

Generally as a forum we are collectively very aware of what is happening across the ME/CFS world, so I can only assume that this lock down on any information out Cochrane about what has and what is currently happening in relation to the exercise review is a deliberate policy. It appears that Cochrane is strongly resistant to withdrawing the 2019 exercise review, despite their recognition that this update was seriously flawed at the time it was published, and despite the American CDC and the UK’s NICE now drawing the opposite conclusion from their own evidence reviews. This leaves us with the question what on Earth is going on behind Cochrane’s closed doors.

This is such an important issue given researchers, clinicians and service planners continue to cite this flawed review to recommend an intervention known to harm people with ME/CFS and now being seen to harm those with Long Covid who also experience Post Exertional Malaise.
Click to expand...
Agreed
 
Here are the latest numbers by country - 70 different countries, without counting the UK nations separately:

Argentina 7
Australia 969
Austria 37
Azerbaijan 1
Barbados 1
Belgium 128
Belize 1
Bermuda 1
Brazil 8
Bulgaria 2
Canada 791
Colombia 3
Costa Rica 1
Croatia 6
Cyprus 2
Czech Republic 5
Denmark 206
Egypt 2
Estonia 1
Finland 32
France 374
French Polynesia 1
Germany 378
Gibraltar 2
Greece 7
Grenada 1
Guadeloupe 2
Guernsey 1
Hong Kong 2
Hungary 14
Iceland 2
India 5
Ireland 50
Isle of Man 8
Israel 49
Italy 61
Japan 2
Jersey 2
Kenya 1
Latvia 1
Lithuania 1
Luxembourg 2
Malaysia 2
Mexico 7
Montenegro 2
Morocco 1
Netherlands 476
New Zealand 661
Norway 523
Palestine 1
Philippines 2
Poland 6
Portugal 7
Réunion 1
Saudi Arabia 1
Senegal 1
Serbia 3
Singapore 1
Slovakia 1
Slovenia 2
South Africa 15
South Korea 1
Spain 93
Sweden 384
Switzerland 47
Thailand 1
Trinidad & Tobago 3
Turkey 2
UK 2956
US 886

Grand Total 9256
Click to expand...
 
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