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

As per that last post, Solve have been helpful in promoting the petition, and we are talking with them about the letter. Decisions understandably can take a while, especially in larger organisations.

But yes. Maybe many US advocates have focussed on other important advocacy targets and aren't so aware of the Cochrane reviews and their influence on GET and CBT recommendations in medical textbooks and training?

Possibly the heated discussions about the promotion of spinal surgery as an ME/CFS treatment has created some issues with some organisations supporting anything originating from here? If so, hopefully we can move on from that.

 

Praise of a moderator is never off topic. I think that's a rule? Anyway.

Thanks Michelle, S4ME only works because lots of good people, such as yourself, contribute.

 

Do feel free to contact them to encourage them to give their support. I think it helps considerably if someone from the same country adds their voice.

 

This has just come by email from the editor in chief of Cochrane:
_________________

Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.

After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at exerciseforme-cfsupdates@cochrane.org

We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.

Please subscribe to the above email for further reports and updates. Thank you.



King regards,

Office of the Editor in Chief
____________

 

Thanks Andy.

The petition is still necessary and worth promoting, as the reply makes no mention of when and indeed whether the 2019 Larun et al review will be removed.

 

Many thanks to #MEAction UK who have now added their support to the letter and are spreading the word about the petition on social media.

 

Well, they did end with 'King regards...

 

“In the next few weeks” is highly elastic and therefore meaningless as a timeframe - fudge

referring to “last month” in a response on the final Friday of a month is also fudging, giving the impression that it refers to August (before the letter) when it could mean in the last month September (after the letter)

taking into consideration -more fudge

this amounts to a standard response sent by someone in the office of the editor, not even under the editor’s signature, as a former civil servant I can say this is minimum possible effort they could make in reply


nothing indicates that the views of 8000 people and 30 plus organisations are being respected.


Eta it sits just above “thank you for your recent correspondence the contents of which have been noted”

 

Thanks Peter, yes, I noted that it has been going on since 2015 in the attachment to the letter and linked the history, and commented that it had been revised 5 times. Good to remind us this has been going on so long.

 

PETITION UPDATE
30 September - Cochrane has replied - but don't get excited yet

SEP 30, 2023 —

We wrote another open letter to Cochrane yesterday, 29th September, emphasising the need for urgent action.

We have today, 30th September, received a brief reply from Cochrane to the open letters and petition, copied below:

"Dear members of the Science for ME Committee and Forum,
Thank you for your email and sharing the open letter and petition.

After an unplanned hiatus, the Independent Advisory Group resumed its work last month, including preparing to resume public reporting and general communication. A first report and project website update is planned for release in the next few weeks. Reports and updates will be notified to those who subscribed to the email list at exerciseforme-cfsupdates@cochrane.org

We do regret the lengthy delays in this project, and are taking the concerns and requests in your letter into consideration.

Please subscribe to the above email for further reports and updates. Thank you.

King (sic) regards,

Office of the Editor in Chief"



We note that Cochrane has not addressed our primary request, the immediate removal of the flawed 2019 review by Larun et al.

We also note that Cochrane believes that the expressions of concern about the review from nearly 8000 individuals and over 30 organisations dedicated to the support of people affected by the review do not warrant a response by a named officer. Instead, it seems the job of responding has been delegated to an unnamed assistant.

The Science for ME committee and staff will continue to support this petition and related advocacy actions until Cochrane no longer provides a platform for a poorly executed and biased review of exercise therapies for CFS or ME/CFS.

The number of organisations supporting the open letter has increased by three since the last update:

RME Östergotland (Sweden)

#MEAction UK

ME CFS Foundation South Africa



Thank you all for caring about this issue. Please do keep spreading the word and encouraging others to sign.