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

Thanks to ME Advocates Ireland for signing the letter and sharing the petition

 

Here's an up-to-date list of organisations who have supported the letter. It would be great to get some more. Many organisations can't make a decision until their next board meeting, so we may not hear for a month or more.

 

The forum has had a reply from BACME, the British Association of Clinicians in ME:

As far as I know, Cochrane has never said publicly that the review had been paused. Or, for that matter, restarted. So, if BACME is well informed, it seems that a review process that was aiming to be a model of stakeholder engagement and involve regular updates was 'paused', possibly for over a year, without any notification to the stakeholders.

As yet, the forum has had no reply from Cochrane to the open letter.

 

In happier news, many thanks to Physios for ME for their support of the open letter and for their advocacy efforts.

(added to the organisation list above)

 

I have to say that is a pretty feeble reply from BACME. There is nothing in our letter, accompanying document or petition that they have said they disagree with. I'd like to know where they are getting their information about a pause and restart. Why are they being told things that have not been made public?

As Hutan says, much brighter news from Physios for ME. Thank you for the support. It means a lot.

 

Another layer of comms ineptitude by Cochrane.

Ironically it’s thanks to BACME for letting the cat out of the bag and making us as informed as we have been for 2 years

 

I like what you did there.

It is also interesting to think about the role of the IAG. If part of the role of the members of that group is to advise the review process, it is hard to understand how they can effectively perform that role if they feel gagged, unable to report to and consult with the people they are there to represent. It would be good to know what has caused the absence of transparency.

I agree. An organisation of clinicians that support the NICE Guideline, with its repudiation of both GET and the stigmatisation of people with ME/CFS, and that wants the best clinical outcomes, should have no problem calling Cochrane to remove the flawed 2019 Cochrane Exercise Therapy Review, regardless of the status of a new review.

 

Yes irrespective of the procedural palaver the focus should be the substantive point of the continued live status of the 2019 Cochrane review given its incompatible with NICE 2021.

 

I appreciate the efforts of those within Cochrane trying to move this forward, and in the right direction.

But if Cochrane the institution are having so much internal trouble resolving this – which they indisputably are – then the minimum position they can reasonably take is to temporarily withdraw the review until a resolution of its status is achieved.

As it stands they have chosen the worst possible position, neither withdrawing it nor advancing its resolution.

Shit or get off the pot, Cochrane. You have no more excuses for delay on this critical and urgent issue.

Not impressed with BACME's position on it all either.

 

Perhaps an even more apt metaphor is that they produced shit a while back, and they've been hovering protectively over it ever since, refusing to let anyone flush it away.

 

I'm not sure we have any evidence anyone at Cochrane trying to move this forward, or in which direction. If there were, they have been astoundingly ineffective. Or perhaps they have been very effective, if their aim was to block the new review.

If Karla Soares-Weiser had been serious about the 2019 review being already out of date at the time of publication, why did she publish it? She is editor-in-chief, having taken over in June 2019 from David Tovey who had asked the authors of the review several times to change it and still wasn't satisfied, as far as I can see, at the time he left. Yet Dr S-W weakly let it be published as one of her first actions in post. If she was serious about it only staying in place for a couple of years until a new review was published, why hasn't she withdrawn it yet?

She then set up a review process and gave extraordinary power in selection of the members of the IAG and recommending members of the review author group to Hilda Bastian, a long time Cochrane insider. It became clear when Hilda took more than a year to make her selections in a completely opaque process with some very odd selection criteria that this didn't bode well.

Two Cochrane editors were tasked with overseeing the process, yet they have allowed the promised monthly updates to cease for two years with no public explanation. If Hilda or anyone else had been, for personal or professional reasons, unable to carry out their appointed role, the editors should have stepped in and replaced them swiftly in order to keep the show on the road.

They said they were working to replace the outdated and wrong review as a priority. They have dismally failed.

We now hear, via a UK clinician group that is not part of Cochrane, that the process has been paused and is now restarted. Where did they get this information? Is it even correct? Why has this information not been made public?

No, I can't agree that there are any serious efforts at Cochrane to move this forward. All the evidence points to the opposite. I think we've been stitched up. Even if the new review appeared tomorrow, we have no guarantee that it will be better than the old one. Yes, there are a few patients/carers on the IAG and writing group, but they are outnumbered and out powered by Cochrane insiders.

I despair. But I will keep on trying to fight this, in my feeble and limited way. The lives and health of millions are at stake.

 

I have reported it. If anyone sees a threatening or otherwise offensive comment on the petition, please do use the report button on the petition to report it.