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

I guess this is what Cochrane calls keeping us updated.

Posted on the letters thread:

 

It might be worth asking if there was any chance of an answer. We've asked the same question multiple times. They simply ignore it.

 

Latest petition update:
1 October 2024 Enough is Enough

Thanks to our supporters
Thank you so much to all have signed and shared the petition link.

Thanks to Fatigatio e.V. Bundesverband ME/CFS in Germany for adding their support to this campaign. We now have 77 organisations, including most national ME/CFS charities, calling for the Larun et al review to be removed. You can find the full list here. If an organisation you are connected with isn't listed, please tell them about this campaign.

People with ME/CFS-like Long Covid are also being targeted with psychobehavioural therapies such as graded exercise, with the Larun et al review cited as evidence of utility. If you know of a Long Covid organisation, please let them know about this campaign.

Five years of the Cochrane Larun et al review
With the fifth anniversary of publication of the exercise review rapidly approaching (2nd October), we sadly report that there has been no discernible progress on any front.

More on broken promises
None of the broken promises we reported in May and August have yet been fulfilled, and there are more.

* Broken promise 1. Resumption of monthly updates from the Independent Advisory Group (IAG) - still broken
* Broken promise 2. Revision of the editorial note on the 2019 Cochrane Exercise Therapy Review - still broken
* Broken promise 3. Appointment of a doctor who treats ME/CFS as a new IAG member - still broken
* Broken promise 4. Public consultation on a report on problems with previous reviews, first promised for autumn 2021, then for early 2024 - still broken

Here are the next two broken promises:

* Broken promise 5: Cochrane keeping us "informed of progress"
In an April 2024 letter from Cochrane to S4ME, after stating that the complaints response process will take 'some time', they said:
"In the short term, some of the questions will be addressed on the Cochrane project website. We will keep you informed of progress."
We have not been informed of progress, nor has there been anything on the Cochrane website since Hilda Bastian's last update in December 2023.

* Broken promise 6: IAG lead Hilda Bastian providing a route for public communication
Hilda Bastian has provided an IAG email, cochrane.iag@gmail.com and a 'Talkpage'.
Members of S4ME have described the talkpage and emails as a 'lightning rod', or a 'black hole' where community frustration is channelled and disappears. As far as we know, email communications are only read by Hilda Bastian, it is left to her whether to share emails with the IAG or anyone at Cochrane. Some posts to the talkpage wait weeks in moderation, and when posted, questions remain unanswered and nothing changes.
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Enough is enough
In our letter of 7th August 2024, we asked some questions about progress on our formal complaints that were sent to Cochrane in October 2023. The questions remain unanswered; the complaints remain unresponded to. We said in an earlier update that Cochrane's quality control processes are broken. A year of no useful response to well-considered complaints is not good enough for an organisation that provides information to guide clinical decision-making.

In that August 2024 letter we said we expected
- a thorough review of our complaints and the harms evidence we submitted, with a report back to us within the next two months;
- withdrawal of the 2019 review by 2nd October 2024, five years after publication

We concluded:
Anything less, and we will be forced to conclude that Cochrane does not take its own policies and charitable objectives seriously, and to consider our next steps including taking our complaints to other bodies.

The deadline is a day away, and there has been no progress from Cochrane. People continue to be harmed by the flawed review. Therefore, we are starting work on making formal complaints to organisations such as Cochrane's funders and the UK Charity Commission, and to contact the media. If you can help, please contact a moderator at the Science for ME forum.

 

The latest update has generated further signatures, total is now 11,627 showing there are potential supporters in the ME/CFS and Long Covid community who weren’t already aware of the petition.

Please consider resharing the petition on your social media if you’re active there. Please also highlight the petition to any organisations or groups and ask them to share or reshare it.

 

Now 11,836 signatures.

It's been wonderful to see the recent increase in support.

Thanks very much to the latest supporting organisation: Suomen ME/CFS-yhdistys ry - The Finnish ME/CFS Association.

If any members of Suomen ME/CFS-yhdistys ry are members here, it would be great to hear more about your organisation.

 

I think we are past the point were that can shift them. We are well into putting their behaviour on the public record for future accountability.

 

We have that in mind, though currently don't have the capacity to organise it quickly.