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

8,199 signatures at time of posting.

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

 

8,225 signatures at time of posting.

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

 

Since 2020 Cochrane have used the prospective of this independent advisory group’s imminent ‘advice’ as a way of avoiding their own failure to address the serious problems with the existing flawed exercise review and the fact that its continued active status within the Cochrane library is an ongoing source of real harm to people with ME/CFS and Long Covid patients meeting the diagnostic criteria for ME/CFS. The IAG is currently there primarily to suggest how a replacement review could be developed. We have no firm assurances that the IAG will provide any ‘advice’ relating to what has gone wrong in Cochrane’s past and current processes or about the official standing of the extant exercise review whilst its replacement is being developed, or even if the IAG do make any recommendations relating to the current review’s status that Cochrane will feel bound to act on that advice.

It is possible that the IAG will advise the withdrawal of the current review immediately in the next few weeks and that Cochrane will promptly follow through on that, but so far their action over the previous decade suggest Cochrane will prevaricate and use the prospect of the restarted new review process as an excuse to take no action on the existing harmful review until however many years down the line a replacement is completed. Given there are now existential funding threats facing Cochrane, how long could any new review process take or will it even be completed? We face a real possibility, as others have suggested, that the current review will remain published in the Cochrane library and that Cochrane as an active organisation folds, leaving no mechanism for its future withdrawal.

[corrected typos and deleted some redundant wording]

 

we've heard that before tho, more than once.

any further feedback from BACME?

https://www.s4me.info/threads/petit...erapy-for-cfs-review.35109/page-4#post-494524

 

8,247 signatures at time of posting.

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

 

An example of credulity.
Or ordinary charity model conflict of interest, fearful of participation in public criticism of official bodies. Or a reluctance to publicly align with other advocacy groups in doing so.

 

As we have just been highlighting on social media*, the Irish ME/CFS Association has decided to support this initiative also.

*e.g.

 

ME charities/orgs/patient groups MUST carry on signing and not stop UNTIL Cochrane have actually *Removed the Review*.

Our faith in our representational orgs is thin enough as it is. Any patient charity/org that believes Cochrane is going to remove the hugely damaging Review just because Cochrane stated that they will "say something in the next few weeks" is beyond naïve - they have not followed the Cochrane saga that has consumed patient advocates' energy year after year, and are failing the patients they are supposed to represent.

It's beyond belief that those charities/orgs are letting us down like this.

 

Great questions. I hope that at some point, Cochrane can be persuaded/ compelled to reply to them.

 

This letter is perfect.

 

A great letter, any response to this hopefully will give some insight as to whether we are looking at incompetence or deliberate obfuscation.

 

Indeed. Well done @Trish & co!