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

Posting this here for now, since I can't think where else to post it.

Cochrane sometimes published comments about reviews which are submitted via their official comments system.

There are 3 comments about the 2019 Larun review plus a series of comments about older versions of the review.
They can be read here:
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, Jonathan R Price | 2 October 2019
Comments

There is a new comment that has just been added. Since it's short, I'll copy it here:

Lack of clarity that exercise therapy has no clinically important effect
Published : 15 August 2024

• Ann Milne

The abstract currently states that "Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies". There is nothing in the text to explain that the rating of moderate certainty evidence allowing the use of the word "probably" is for a "non-zero" effect on fatigue. This means the effect is not clinically important. Please can you explain why this isn't clarified anywhere the text of the review, either in the abstract or the discussion?

 

We have a new petition update today:


Thanks to our supporters
Thank you to the 11,300 people supporting the campaign from 76 countries.

Thank you also to The Grace Charity for M.E. for adding their support to this campaign. We now have 76 organisations calling for the 2019 review to be removed, including most national ME/CFS charities. 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. It is important that Long Covid organisations understand that there is no credible evidence to support the use of graded exercise therapy in post-infection fatigue syndromes. If you know of a Long Covid organisation, please consider informing them about this campaign.

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Our latest letter to Cochrane
On the 7th of August, the Science for ME forum committee sent another letter to Cochrane summarising our efforts over the last 11 months to communicate with them about the 2019 Larun et al review. You can read the letter here.

In the letter, we asked a number of questions about Cochrane's priorities and the status of the formal complaints we submitted 9 months ago. We noted that if Cochrane continues to not take action, "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". We have not yet had anything more than an acknowledgement of receipt of the letter.

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The broken promises continue
There are so many, that we have decided to just cover two in each of our updates. In the last update we talked about these two:
* 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

Here are another two:

* Broken promise 3. New IAG member
In the December 2023 IAG update, Hilda Bastian invited nominations for a new position in the IAG specifically for a doctor who treats people with ME/CFS. While we don't see the expansion of the IAG as real progress, it is possible that while this vacancy remains, the IAG will not function. There has been no appointment announced.

* Broken promise 4. Public consultation on a report on problems with previous reviews
In the June 2021 IAG update Hilda Bastian promised a public consultation process on a draft document summarising the criticisms made of the current and previous versions of the Cochrane Larun et al review "in the coming weeks". This paper was to inform the new review process, including the protocol. In the November 2023 IAG update Hilda again promised this public consultation process. In the December 2023 updateHilda said that the consultation would occur in early weeks of the new (2024) year. To date, there has been no such consultation.

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The harm continues
As we noted last time, while Cochrane continues to obfuscate and delay, people continue to be harmed by their faulty advice.

Since our last update, the Royal Australian College of General Practitioners revised their HANDI guidance on GET for CFS. The College continues to promote GET as a treatment for ME/CFS, citing only the flawed PACE Trial and the Larun et al review as evidence. This is the advice on treatment that Australian GPs are being given:
"Exercise and physical activity considered [sic] a safe intervention with numerous health benefits, including physical and mental health. However, participating in an uncontrolled manner can increase symptoms temporarily."

Paul Glasziou, a Professor of Evidence-Based Medicine is the person in charge of the RACGP's HANDI guidance including this woefully inaccurate advice on GET. He advised on the 2019 Larun et al Cochrane Review and has a long involvement with Cochrane.

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Thanks again for your support as we continue to try to stop the harm. Please do keep sharing the link to the petition.

If you would like to talk about this issue you are very welcome to join us at the Science for ME forum.

The Science for ME committee

 

The latest, and briefest, communication from Cochrane:

"Following up on your complaint about the 2019 Cochrane review, "Exercise therapy for Chronic Fatigue Syndrome" by Larun et al., we are still investigating and we will update you as soon as we can.
Kind regards,
Cochrane Complaints"

Also posted on the letters thread.

 

We have asked them multiple questions multiple times on things that should be straightforward to answer, and for which there can be no possible justification for refusing to answer.
We don't even get any acknowledgement that we've asked any questions. It's just solid stonewalling.

 

And we've asked them in multiple ways - letters, formal complaints, communication via back channels, face to face conversations, and to the Board generally and individual members, to the Chief Editor, to Hilda, to specific Cochrane office holders including people we know personally. All we get is stonewalling.

It's so wrong and it's causing so much harm. I can't believe that there is no way to appeal to a higher authority, the law, public opinion via the media, something. It's certainly time. Cochrane can't say we have not given them enough time.

 

In Hilda's November 2023 update on the Cochrane website, she said this:

So they have a history of taking a year to consider a complaint, and describe it as a confidential process. I think we can guess who might have been involved in making that complaint. What I'd like to know is whether the people/person who made that complaint was kept informed of progress during their year long wait. I rather suspect that Cochrane editors might have been somewhat more deferential to medical professionals lodging complaints than to mere patients. But maybe I'm wrong. We have no way of knowing.

 

It's now over a year since we sent our first letter to Cochrane (28th August 2023), and started our petition (4th September 2023).

It is fast approaching the 5th anniversary of publication of the Larun review (2nd October 2019).

In our most recent letter to Cochrane a month ago, we said:

Meanwhile, Hilda remains silent. We still haven't had any of her 'monthly updates' since December 2023.

What now? Any suggestions?