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

Great news you can message me

 

That's wonderful @Yann04, great work.

 

Now only 100 signatures from 11,000

 

So basically, as I understand it, a decision was made not to withdraw the 2019 review some time in 2020/1 behind closed doors and with no public statement saying such a decision had been reached or the reasons for it. And further, any other requests to withdraw the review, even on new grounds, would be stonewalled with the statement that the matter is closed.

 

Thank you to Long Covid Switzerland and Long Covid Kids Switzerland for becoming our latest signatories to the Open Letter to Cochrane.

Thanks to @Yann04 for making contact

 

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

73 short of 11k now 10,927

 

I note on this public thread that Hilda Bastian's talk page intended for people to be able to ask questions and raise issues about the IAG and the project for developing the new review has come back to life after a 2 month hiatus.

A couple of links:

Hilda's talk page

Members only thread

 

Only 38 signatures from 11k now looks likely to go over that hurdle by the end of May

 

It's wonderful to have the Minnesota ME/CFS Alliance supporting the campaign. Thanks very much to @Dakota15 for facilitating that.

That brings the number of organisations supporting the campaign to an amazing 75.

Only 28 signatures from 11,000 now. The petition has been getting some good support from Australia, Canada and the UK recently.

 

May's update:

PETITION UPDATE

30 May 2024
Thanks to our supporters
Thank you to the more than 11,000 people who have supported the campaign. With the most recent additions from Zambia and Nepal, people from 76 countries have signed.

Thank you also to the following organisations for adding their support to this campaign:
Solve M.E. - USA
UK All Party Parliamentary Group on ME - UK Members of Parliament with an interest in ME/CFS
Chester MESH self help group - England
Long Covid Switzerland
Long Covid Kids Switzerland
Minnesota ME/CFS Alliance - USA

These additions bring the number of organisations calling for the 2019 review to be removed to 75, including most national ME/CFS charities. You can find the full list of supporting organisations on the forum. If an organisation you are connected with isn't there, please tell them about this campaign.

People with ME/CFS following Covid-19 infections 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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A reply from Cochrane
In our last petition update in March 2024, we told you that we had officially presented the petition to Cochrane, along with 10 reasons for why the flawed 2019 exercise therapy review should be withdrawn.

We have received a brief reply from Cochrane in early April, as follows:
Thank you for your correspondence. We will include the additional points and references to studies in our review of the issues raised by S4ME in previous correspondence. This thorough process will take some time, and we will get back to you about this in due course.

In the short term, some of the questions will be addressed on the Cochrane project website. We will keep you informed of progress.

Kind regards, Cochrane Support


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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. Here are the first two:

Broken promise 1. Monthly updates from the Independent Advisory Group (IAG)

In October 2019, Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, said about a planned replacement review

"I can confirm that work will begin on this new review at the beginning of 2020 and that we will keep patient groups regularly informed of progress during the subsequent months.”

In May 2021 Hilda Bastian apologised for the slow progress on the new review and promised that there would be monthly reporting from the IAG going forward. Since then, until now, there have been only four further brief updates.

In November 2023, after no news for nearly 2 and a half years, Hilda promised that the monthly updates would resume. There was an update in December 2023, but there have been none at all in 2024.


Broken promise 2. Revision of the editorial note on the 2019 Review
In both the IAG November and December 2023 updates Hilda Bastian indicated that there would be a revised editorial note placed on the 2019 Review. Hilda said:
"As discussed in my last report, the editorial note on the current review on exercise and ME/CFS will be revised."
Since that time, there has been no news about when a revised editorial note can be expected, nor what the note might say. Of course, the 2019 review should be removed. But while that review remains, a prominently displayed editorial note saying that it should not be used to guide clinical practice could reduce the harm.

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While Cochrane continues to obfuscate and delay, people continue to be harmed by their faulty advice. Thanks again for your support as we continue to try to stop the harm.

If you would like to help the campaign, you are very welcome to join us at the Science for ME forum.

The Science for ME committee

 

Many thanks to John and @Catherine Ashenfelter for adding The Grace Charity for M.E. to the list of organisations supporting this campaign.

 

We sent Österreichische Gesellschaft Für ME/CFS an email in English in September last year, and an email in German last year, to contact@mecfs.at. Both received automated responses.

If anyone can help us reach decision makers in the association, or give us an alternative email address, that would be fantastic. It certainly would be good to add another national association as supporters.

I note that the Austrian WE&ME Foundation have signed, which is great.