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

We have had a drop off in signatures over recent days:
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We are hearing from some organisations that they have been told that Cochrane is going to publish something shortly, and that therefore there is no need to support the petition or the open letter. Of course, the removal of the 2019 review might be scheduled for a few weeks, and that would be wonderful.

But I think it's much more likely that Cochrane will continue to want to maintain the status quo while a replacement review is worked on. And frankly, while Garner and his like continue to be powerful in Cochrane, and while so many of the Cochrane published reviews have the flaw of assuming that subjective outcomes in unblinded trials is just fine, the prospect of a completed and unbiased Cochrane Exercise Therapy Review for ME/CFS anytime soon seems rather remote to me. Even under the best scenario, a replacement review will take a year or so to complete.

So, to say 'great, Cochrane are promising to publish something shortly, there's no longer a problem', is, I think, naive. If an organisation that you have some involvement hasn't supported the open letter yet and you have the capacity, please do explain things to them.
 
I don't think we should back off at all until that damn thing is actually withdrawn completely, and an explicit note added redirecting visitors to the NICE and IOM guidelines, at least until Cochrane's re-review is actually done.

Then we have to start preparing for the re-review.
 
All that’s been indicated in writing from the Cochrane office team is that a project update will be published.

Call me sceptical :whistle: but I will eat my hat if anything substantial addressing the letter is in it.
Maybe a timescale.

In the absence of any substantive response I don’t see the prospect of an update “in the next few weeks” justifies any ME organisation not joining in solidarity with all those pwme who have shared the harm they have experienced.
 
Since 2020 Cochrane have used the prospective of this independent advisory group’s imminent ‘advice’ as a way of avoiding their own failure to address the serious problems with the existing flawed exercise review and the fact that its continued active status within the Cochrane library is an ongoing source of real harm to people with ME/CFS and Long Covid patients meeting the diagnostic criteria for ME/CFS. The IAG is currently there primarily to suggest how a replacement review could be developed. We have no firm assurances that the IAG will provide any ‘advice’ relating to what has gone wrong in Cochrane’s past and current processes or about the official standing of the extant exercise review whilst its replacement is being developed, or even if the IAG do make any recommendations relating to the current review’s status that Cochrane will feel bound to act on that advice.

It is possible that the IAG will advise the withdrawal of the current review immediately in the next few weeks and that Cochrane will promptly follow through on that, but so far their action over the previous decade suggest Cochrane will prevaricate and use the prospect of the restarted new review process as an excuse to take no action on the existing harmful review until however many years down the line a replacement is completed. Given there are now existential funding threats facing Cochrane, how long could any new review process take or will it even be completed? We face a real possibility, as others have suggested, that the current review will remain published in the Cochrane library and that Cochrane as an active organisation folds, leaving no mechanism for its future withdrawal.

[corrected typos and deleted some redundant wording]
 
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Hutan said:
We have had a drop off in signatures over recent days:
View attachment 20494

We are hearing from some organisations that they have been told that Cochrane is going to publish something shortly, and that therefore there is no need to support the petition or the open letter. Of course, the removal of the 2019 review might be scheduled for a few weeks, and that would be wonderful.

But I think it's much more likely that Cochrane will continue to want to maintain the status quo while a replacement review is worked on. And frankly, while Garner and his like continue to be powerful in Cochrane, and while so many of the Cochrane published reviews have the flaw of assuming that subjective outcomes in unblinded trials is just fine, the prospect of a completed and unbiased Cochrane Exercise Therapy Review for ME/CFS anytime soon seems rather remote to me. Even under the best scenario, a replacement review will take a year or so to complete.

So, to say 'great, Cochrane are promising to publish something shortly, there's no longer a problem', is, I think, naive. If an organisation that you have some involvement hasn't supported the open letter yet and you have the capacity, please do explain things to them.
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An example of credulity.
Or ordinary charity model conflict of interest, fearful of participation in public criticism of official bodies. Or a reluctance to publicly align with other advocacy groups in doing so.
 
Hutan said:
We have had a drop off in signatures over recent days:
View attachment 20494

We are hearing from some organisations that they have been told that Cochrane is going to publish something shortly, and that therefore there is no need to support the petition or the open letter. Of course, the removal of the 2019 review might be scheduled for a few weeks, and that would be wonderful.

But I think it's much more likely that Cochrane will continue to want to maintain the status quo while a replacement review is worked on. And frankly, while Garner and his like continue to be powerful in Cochrane, and while so many of the Cochrane published reviews have the flaw of assuming that subjective outcomes in unblinded trials is just fine, the prospect of a completed and unbiased Cochrane Exercise Therapy Review for ME/CFS anytime soon seems rather remote to me. Even under the best scenario, a replacement review will take a year or so to complete.

So, to say 'great, Cochrane are promising to publish something shortly, there's no longer a problem', is, I think, naive. If an organisation that you have some involvement hasn't supported the open letter yet and you have the capacity, please do explain things to them.
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ME charities/orgs/patient groups MUST carry on signing and not stop UNTIL Cochrane have actually *Removed the Review*.

Our faith in our representational orgs is thin enough as it is. Any patient charity/org that believes Cochrane is going to remove the hugely damaging Review just because Cochrane stated that they will "say something in the next few weeks" is beyond naïve - they have not followed the Cochrane saga that has consumed patient advocates' energy year after year, and are failing the patients they are supposed to represent.

It's beyond belief that those charities/orgs are letting us down like this.
 
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Here's an update on petition numbers - hopefully that's the start of a bit of a resurgence in signing.
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And here's the latest petition update:

PETITION UPDATE
8 October - Global solidarity

OCT 8, 2023 —

Last week we passed the 4th anniversary of the publication of the flawed 2019 version of the Cochrane review 'Exercise Therapy for CFS' by Larun, Brurberg, Odgaard-Jensen and Price. It is also the 4th anniversary of Dr Karla Soares-Weiser acknowledging that the review is not fit for purpose and committing to a process to deliver a new review in two years.

Four years on, and there is no new review. The flawed one, with its recommendation for Graded Exercise Therapy (GET), still remains. We continue to see the review used to support guidelines recommending GET, we are still seeing people with post-exertional malaise told that GET can cure them. This is despite there being no credible studies finding that GET is useful for ME/CFS and despite authorities such as UK NICE and US CDC, after reviewing the evidence, advising against GET for ME/CFS.

Advocates, often at substantial cost to their health, have actually been pointing out the flaws in this Cochrane review since the first version of the review was published in early 2015. Now, the best part of a decade on, we are hearing rumours of Cochrane 're-starting' the new review process, but the harmful review still remains in place.

Since the last update, seven more ME/CFS organisations have added their support to the campaign:

Japan ME Association
Danish ME Association
Millions Missing Denmark
MECFS Canterbury (New Zealand)
Emerge Australia
#ME Action Scotland
Irish ME/CFS Association

Thank you very much to all of the 41 organisations, from 19 countries as well as international and regional peak bodies, for supporting the open letter. The President of the Japan ME Association noted that her association has been fighting against GET for years, and hopes for immediate action by Cochrane. We, the petition organisers, hope that the demonstration of global solidarity from ME/CFS organisations in this campaign provides some strength to people who feel that they have been fighting against GET for too long on their own.

If you can, please help to promote this petition, and encourage more ME/CFS or Long Covid organisations to support the open letter. Organisations wishing to add their support can contact us at moderators@s4me.info.

You can join the discussion about the campaign on the Science for ME forum, at Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review. The forum has a range of resources for ME/CFS advocates - it is run entirely by volunteers and membership is free. If you have ME/CFS or advocate for people who do, especially if you live in a country that does not have a national ME/CFS group, the forum is there to support you.
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We have sent another letter to people at Cochrane, this time addressed to the Chief Executive of Cochrane with copies to relevant people. Posted by the committee on the closed thread, and copied here in case anyone wants to discuss it.

Science For ME said:
We have today sent the following email:

cspencer@cochrane.org
cc
editorinchief@cochrane.org
cochrane.iag@gmail.com
gcleng@doctors.org.uk


___________________

To Catherine Spencer, Chief Executive, Cochrane

cc Karla Soares-Weiser, Editor-in-Chief
Hilda Bastian, Independent Advisory Group leader
Gillian Leng, Cochrane Governing Board member, and formerly Chief Executive of NICE

Dear Catherine Spencer,

re: Cochrane reviews of exercise therapy for CFS, now correctly called ME/CFS.

I write on behalf of the committee of the Science for ME international forum. On August 30th we sent an open letter to Dr Soares-Weiser with copies sent to several other senior Cochrane people and to Hilda Bastian. This letter called for the immediate removal of the 2019 Larun et al review of Exercise Therapy for CFS which was acknowledged by Karla Soares-Weiser as requiring replacement at the time it was published. This flawed review continues to be cited in the development of guidelines for ME/CFS clinical care.

The letter also called for public information about the state of the process for developing a new review to replace it. Cochrane publicised this process as a flagship example of a new approach, with stakeholder involvement and engagement at its core, and a new review to be completed by early 2022. Instead there has been no public communication for two years, and not even a protocol published. Patients suffering from harmful treatment as a result of the flawed 2019 review continuing to be hosted by Cochrane are owed answers and action.

We have sent two further open letters and set up a petition currently signed by over 8000 people in support of our requests. The open letter also has the support of, currently, 40 ME/CFS and Long Covid organisations from around the world.

We do not find Cochrane's reply of 'this review topic is currently undergoing a process led by an Independent Advisory Group' a useful response to the concerns we have expressed. Replies from Cochrane suggest that the person delegated to reply is not aware of the issues involved.

We understand that you have had some correspondence with Caroline Struthers about this increasingly unsatisfactory situation, including concerns that the lack of action is contrary to Cochrane's charitable objects which are primarily about the "protection and preservation of public health". We also understand that Cochrane reviews can be withdrawn if there is evidence that a treatment is ineffective and/or there is evidence of harm. The 2021 NICE ME/CFS evidence review and guideline, undertaken and completed while Gillian Leng headed NICE, documented ineffectiveness and harm from graded exercise therapy for people with ME/CFS.

People with ME/CFS have waited through 4 years of empty promises for the flawed review to be withdrawn by Cochrane. A progress report sometime on a process of unknown duration will not suffice. Suspicion grows of interference in the process, and a complete lack of understanding by Cochrane of the seriousness of the impact of this lack of action.

Can you please provide us with clear answers to the following questions:

1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately?

2. If not, why not?

3. Who has the authority and responsibility to remove a Cochrane review that has been shown to be inaccurate and harmful?

4. Do you understand the harm that the ongoing hosting of the 2019 Larun review is causing people with ME/CFS and Long Covid?

5. The planned delivery time of the new review was early 2022. What is the new planned delivery time?

6. We understand Rachel Marshall left Cochrane last year. Who is her replacement as the 'Exercise therapy for ME/CFS' review update project manager?
_______

We look forward to your prompt answers to our questions.

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.

Yours faithfully,
Trish Davis on behalf of the Science for ME committee.
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