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

Latest petition update

The call from patient organisations grows stronger - Cochrane continues to show no sign of listening

NOV 8, 2023

Five more organisations add their support to the campaign

Thank you very much to the following five organisations for supporting the campaign, bringing the number of organisations to 64.

Germany - Lost Voices Stiftung
Italy - CFS/ME Associazione Italiana
Netherlands - Steungroep ME en Arbeidsongeschiktheid
Italy - CFS/ME Organizzazione di Volontariato
United States - Long Covid Families

You can find the full list here. If an organisation you are associated with isn't listed there, please ask them to support the campaign - they can contact us at moderators@s4me.info.

Please continue to share the petition to help get to 10,000 signatures.



No response yet to the formal complaint to Cochrane

We sent the formal complaint to Cochrane on 31 October. Cochrane's complaint process says that it will acknowledge receipt of complaints within three days. More than a week later, there has been no acknowledgement.

Cochrane's complaint process also says that it will respond to the complaint within two weeks. We wait for the response.



No news on the planned new review
On 29th September 2023 'the office of the Editor-in-Chief' told us: "A first report and project website update is planned for release in the next few weeks." Six weeks on, there is still no news. We have been told to send our concerns to the Independent Advisory Group, but they are still not responding. Even if the process towards a new review resumes immediately, it could take years to produce a new review. There is no guarantee that it will ever be completed or that it will be any better than the old review.

Any reasonable person would see that a review that the Cochrane Editor-in-Chief stated was out of date on publication four years ago, with findings that have been declared wrong by NICE and the CDC, and that over 60 informed consumer organisations from 18 countries have said is harmful, must be withdrawn immediately. While it continues to be hosted by Cochrane and cited, people continue to be harmed.

So, this petition is as important as ever. It will remain open until Cochrane no longer hosts a scientifically inaccurate and harmful review recommending exercise therapy for people with ME/CFS.

Karla Soares-Weiser, Editor-in-Chief at Cochrane, and the Editorial Board: the values that Cochrane says it stands for requires that the 2019 review be withdrawn immediately. Please withdraw the 2019 review.

 

We will check with them whether they have received the email and it hasn't gone to their spam folder!

 

Six weeks on from “in the next few weeks”, six weeks til Christmas, chances of “the next few weeks” turning out to be in 2023 are looking slim to impossible.

 

We have had confirmation that our complaint has been received by Cochrane.

 

9400 now
Everyone who has social media please share the link every couple of weeks to help reach 600 more people.

 

Thanks Lucibee.

Here's a link to the review thread:
Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian
Probably best that general commentary about the update goes on that thread.

 

Latest update from the team running the petition:

News from Cochrane, or rather from the Independent Advisory Group

NOV 12, 2023 —

Silence has been broken after a hiatus of more than two years in the promised monthly updates from Hilda Bastian, leader of the Independent Advisory Group (IAG) for the process to develop a review to replace the 2019 Larun et al Review.

You can read the IAG November 2023 update here.
It includes a new way of making public comments moderated by Hilda Bastian - link here.

Assessing progress against the requests we made in August 2023:

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.

There is no indication that this will happen. Instead, the IAG is drafting a note to be added to the review to reduce 'misinterpretation' and better 'reflect critical nuance and limitations in its conclusions'.

We are concerned that this description of the problem misses the point that the review is fundamentally flawed. The problem is not just 'nuances' or with readers misinterpreting what the 2019 review says. The authors failed to understand the substantial bias created by the research methodology of the included studies. The most fundamental flaw that makes the review's conclusions unsound is that small improvements in self-reported assessments of symptoms in unblinded trials of treatments that specifically aim to make people downplay their symptoms are not evidence of the treatment working.

Also describing the problem with the review as being the 'limited applicability' of its conclusions misses the point that when conclusions are not based on good evidence they should not be applied to any patients. Restricting the use of the review to a particular subset of people does not fix the problem.

A note that says anything less clear than "This review is fundamentally flawed. Do not use it for clinical guidance" in large letters will not fix the problems with the review.

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.

We welcome the November 2023 update and thank those who are working towards an accurate review. However, 'one swallow does not make a summer'; one update does not make a functioning process that will produce an accurate review in a timely way. There is, as yet, no evidence that Cochrane understands the key problem with the 2019 review, and therefore no evidence that any replacement review will adequately address it. There is no evidence that Cochrane appreciates the urgency of the need for change.

It is also clear that people in favour of the old review are vigorously opposing change. Explanations for the two year silence include a lengthy process of dealing confidentially with several complaints, none of which were upheld. One complaint from supporters of exercise therapy for ME/CFS opposing the new review process seems to have taken around a year and the consideration of multiple committees within Cochrane to address.
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So, four years after a process to replace the 2019 review started, it remains in place, and any replacement review is still some way off. More scarce health resources have been wasted delivering treatments that do not work and more people have been harmed. Crucially, more research with the same fundamental flaws that are ignored in the 2019 review - some on CFS, some on Long Covid and some on various "functional" diagnoses - has been funded and done, with the results going on to mis-inform clinical approaches around the world.

We therefore continue this campaign.
Thank you to all who have signed the petition. Please do keep spreading the word.

Cochrane have now acknowledged receipt of our October complaint about the 2019 review; we expect a response soon.

 

A new thread has been created for the discussion of the content of Hilda Bastian's talkpage facility here:
Cochrane - Exercise therapy review - Hilda Bastian's Talkpage