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

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It is part of the forum's campaign to have the 2019 Cochrane Exercise Therapy for CFS review withdrawn, and for there to be either progress on the promised replacement review, or for that process to be abandoned, building on an open letter.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

 

Great response almost 1500 people signed today

 

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.

 

Thank you to the World ME Alliance for undertaking to share the link to the petition with their member organisations.

Thank you to Millions Missing Canada for supporting the petition.

 

Thanks very much to Millions Missing France for their support, and for supplying a French translation of the petition content

 

Great to have the German Association for ME/CFS | Deutsche Gesellschaft für ME/CFS e.V. supporting the letter.
Thanks @Joh for coordinating things.

 

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.

 

3930 signatures

 

There are 281 comments so far. I don't think the number is displayed anywhere, but I can download them to a spreadsheet.