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

Hutan

Hutan

Moderator
Staff member
The Science for ME forum started a petition on 4 September:
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
on Change.org

The link is here: https://chng.it/zTZ7vX9Czd

It is part of the forum's campaign to have the 2019 Cochrane Exercise Therapy for CFS review withdrawn, and for there to be either progress on the promised replacement review, or for that process to be abandoned, building on an open letter.

Here is the Open Letter thread. This is where any replies of substance from Cochrane will be posted.
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review



Here's the petition content:
This petition has been posted on behalf of the committee of the international Science for ME forum:

People with ME/CFS are being harmed by inaccurate clinical advice resulting from a flawed Cochrane Review.

Cochrane is an international body that publishes reviews of research evidence for treatments of diseases; it has a lot of influence over clinical guidelines used around the world. Four years ago, in October 2019, Cochrane published 'Exercise therapy for CFS', supporting the use of exercise therapy for chronic fatigue syndrome (more correctly known as ME/CFS).

Cochrane's editor-in-chief admitted the review was not fit for purpose on publication, but it continues to be hosted in the Cochrane Library and cited in scientific journals and clinical guidelines. This is despite government organisations such as the UK's NICE (NG206: 1.11.14) and the USA's CDChaving found, following unbiased evaluations, that there is no evidence that exercise therapy is effective for ME/CFS. This is also despite virtually all ME/CFS patient organisations rejecting exercise therapy as a valid treatment of the disease and many people with ME/CFS reporting becoming much sicker after graded exercise therapy.

Also in October 2019, the Cochrane editor-in-chief promised to commission a new review with the process to be a pilot of a new approach, involving an independent advisory group and public consultation. The aim was to complete it in two years. In 2023, not even the first step, a review protocol, has been agreed. There has been no public consultation and none of the promised monthly updates since August 2021.

The Covid-19 pandemic has created even more need for evidence-based assessments of proposed therapies for ME/CFS. Many of the millions of people who are developing Long Covid meet ME/CFS criteria and have the symptom of post-exertional malaise, contraindicating Graded Exercise Therapy.

The committee and members of the international Science for ME forumhave written to Cochrane requesting:

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.

AND

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.

The letter has been posted here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

Please sign this petition to call on Cochrane for action.

The Committee of the Science for ME international forum
Click to expand...
 
Less than a day after starting the petition, we have over 1800 signatures, and hundreds of comments, many of them from people with ME/CFS and Long Covid who have been harmed by medical advice that they should exercise their way to recovery. I know that exercise can harm, of course, but reading all of those comments is still shocking.

You can 'like' the comments made in the petition. It's a great way to amplify their effect.

Thank you to everyone who has signed the petition and shared it with their network. There is terrific geographic coverage.

If organisations sign the petition, please let us know. We will record supporting organisations on the Open Letter thread.
 
EndME said:
Getting close to 2500 signatures now :)

Can someone tell me how the change.org petition can be used? Can signatures directly be added to the Open Letter or will it be rather a matter of quoting this petition in the letter?
Click to expand...

My understanding is that the letter has already been sent in order to reach Cochrane before their September meeting, though people can email S4ME if they want their name added to the online version.

Presumably we will present the petition separately to Cochrane at a later date in order to demonstrate there is considerably wider concerns about their failure to adequately address the problems of the ME/CFS exercise review than just ourselves.
 
EndME said:
Getting close to 2500 signatures now :)

Can someone tell me how the change.org petition can be used? Can signatures directly be added to the Open Letter or will it be rather a matter of quoting this petition in the letter?
Click to expand...
I'm not on the committee, but I expect they will decide when and how to inform Cochrane about the petition.

We can't add the names from the petition to the list of signatories of the letter, as many don't make their names public. The petition was set up to enable more people to show their support. Doing it by individual emails quickly became too unwieldy and time consuming for moderators.
 
The email sent to various Cochrane addresses linked through to the thread with the open letter. That thread has a list of some of the people who support the letter and a link through to the petition. I was thinking that we could say how many people have supported the petition on the open letter thread, it would give the petition a bit more visibility. I'll do that now.

Change.org allows the list of supporters and their comments to be downloaded. So, potentially we could present all of that information to Cochrane directly. The committee hasn't thought about that yet.
 
About the financial donations on the Change.org petition:
If someone donates, that money buys visibility for the petition when people are on the Change.org website. Our petition becomes one of the ones that people who are there to support their favourite cause might see as 'Other petitions you might like to support' at the bottom of their screen. So, S4ME doesn't get the money, Change.org does.

So far, people have donated around Euro900 (approx USD900). That has gained us an extra 216 signatures. There are different ways to look at that. It's an expensive way to get signatures, as our issue is complicated and a bit niche - random people browsing the Change.org site probably won't be interested. And the extra signatures we will get in this way won't be the thing that changes Cochrane's view of things.

On the other hand, perhaps our petition and the comments people have made will inform someone who didn't know about ME/CFS before, and it will help to change their mind about how they see people with ME/CFS. And who knows what flows from that.

I'm incredibly grateful that some people have chosen to contribute money, but a bit embarrassed by it too. I want people to be clear about what their money is doing. For most people, telling their friends about the petition and/or donating to a favourite ME/CFS charity is probably better than giving money to Change.org.
 
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