2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

That's a really good article, @dave30th, thank you.

 

Yes, a great article Dave.

Thanks to you and The Sick Times for the mention of the petition and the link.

 

15,281 signatures on the petition.

 

I think, having communicated with some, and to the extent that they think about us at all,
they think that at least a large proportion of us are hypochondriacs and psychosomatics who are truly helped by GET and CBT. They may think that a minority of us have a physical disease, but they truly don't believe that GET and CBT harms anyone. I have been told 'who are you to deny people a treatment that can help them?'.

So, yes, they won't listen to us.

Unfortunately, it seems that they can't be bothered, or they think it's not in their interest, to look at the quality of the trials and, actually, the lack of evidence for any real benefit from those trials and work things out for themselves. We need real experts in trial design and systematic reviews to speak up.

 

To keep this thread focused on the thread topic, some posts have been moved to a new thread:
Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

 

The S4ME committee has today submitted more complaints to the Cochrane Complaints process.

The submission is posted in full over two posts here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

I won't copy it all here, since it's long.

This is the list of headings we used:

Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it.

Complaint 2025-1: Creation of a new citation and publication date as a result of attaching an editorial note to an unchanged review

Complaint 2025-2: Publication of a review as a new version without critical comments being addressed

Complaint 2025-3: Misleading labelling of the unaddressed critical comments as applying to 'a previous version'

Complaint 2025-4: The appearance but not the substance of an update

Complaint 2025-5: Questioning Cochrane's decision making. What was the real reason behind Cochrane's actions on this review?

This is our conclusion:

Conclusion and a way forward.

We find Cochrane's dragging out the promised two year replacement review process and sudden decision after five years of little progress to cancel the new review, and further to publish the flawed and outdated 2019 review five years on as if it were a new review unethical. Cochrane's ongoing actions in relation to this Review are harming its reputation, misleading clinicians, and most important of all, harming many thousands of patients.

We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS.

We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients:

1. Remove the 2024 version (version 9) from publication.

2. Post the Editor's note on the 2019 version stating cancellation of the new review process, but removing ongoing endorsement of the 2019 Review.

3. Post a new Editor's note, as advised by the Independent Advisory Group, saying that the Review is outdated and inaccurate, and should not be used for clinical care.

4. Replace the inaccurate notes attached to the critical comments submitted since 2019 with a note clarifying that the comments have not been addressed or acted on by the Review authors.

5. Make a public statement that the Review should not be used for clinical care on the grounds that its findings are unsound.

6. Stand firm against pressure from proponents of exercise therapy for ME/CFS with vested interests, including all those we indicated in Complaint 2025-5.

7. Set up an urgent review of the decision not to withdraw the Larun review. This may necessitate seeking advice from external experts in clinical trials from medical fields outside psychiatry, psychology, psychosomatics, rehabilitation and exercise medicine, and with no expressed support for exercise therapy or other psychobehavioural interventions for ME/CFS or conflicts of interest. It should also involve an unbiased review of all evidence provided by us and others including comments, complaints and material collated by the Independent Advisory group.
__________________

 

Hilda revealed in one of her updates that Cochrane had spent over a year investigating a complaint from exercise for ME/CFS supporters. She also mentioned in that update some other complaints that had been investigated.
We have had nothing official from Cochrane except standard 'we are still investigating' emails relating to our complaints.

Hilda said this on her talkpage on January 26th 2025, in answer to a question from me:
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/