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

Thanks, Caroline, you have been doing a valuable job with your letters. I think the responses to us add to the picture. I think we may want to pursue other avenues such as Cope and the Charity Commission too, and likely will be coming to you for advice. We haven't decided on the next stage yet.

 

The 'matter is closed' part is referring to our questions about whether they are going to withdraw the 2019 review.
The answer is, clearly as far as the editor in chief is concerned, the will not withdraw it until the replacement is published.

The rest is just fobbing us off to the IAG for everything. Given the IAG is hasn't communicated with the public for over 2 years, that's completely unstatisfactory. The rest of the verbiage is just flannel. They clearly haven't bothered to read our letters.

There was a process laid out when it was set up, described here:
Stakeholder engagement in high-profile reviews pilot
Basically
- a review writing group, as usual for Cochrane, who will actually write the protocol and the review,
- plus the addition in this case of the IAG which is supposed to enable patient input into the process, and act as advisor to the review writing group.
- There was also an allocated project managing editor at Cochrane, but they are now denying this was ever intended to be more than just at the setting up stage, and are now leaving total control to the IAG.

Edit to add:
The editor in chief seems to have stepped away from it completely, having set it all up and said she would be dealing with any disagreements that arise between the 2 groups. I guess her role now will just be to appoint peer reviewers and decide whether to publish the new review if it ever materialises.

 

I sympathise if they have non disclosure agreements, but as volunteers working for a charity (Cochrane) on non sensitive material that's all in the public domain (research papers etc), I don’t see how any non disclosure agreement can be legally binding. We’re not asking anyone to disclose personal information about any individual.

The only constraint I can imagine holding individuals back would be the threat of sacking them and/or closing the process down and leaving the 2019 version up for even longer, or letting the BPS people do the update.

 

I disagree with you Bobbler about confusion over the old 2019 published review and the planned new one. They have been clear all along that the process is intended to be what should be a straightforward series of steps:

I. the 2019 review has gone through peer review and been published in October 2019.
Its writing team have stood down and will make no further revisions
It will remain in rhe Cochrane Library for public use until replaced by the new review.

2. A new review writing group has been appointed and tasked with writing a new protocol to reflect current information about ME, and to use this and up to date research as well as taking into account any critiques of the 2019 review to write a new review.

It will be helped in this process by the IAG which will also set up public consultation on the draft protocol when it's ready.

Cochrane has tasked these groups to complete in about 2 years.

3. the review they produce will be peer reviewed in the normal way, and published by Cochrane in early 2022.

4. At the same time as the new review is published, the old one will be removed.
______________

All very clear and straightforward.

Except it hasn't happened as planned.

Hilda Bastian was appointed in February 2020 to lead the IAG and given a lot of freedom to appoint its members and decide what it would do. It took her over a year just to get the groups set up and she promised monthly reports which ceased in August 2021. Since then, nothing.

So the point of our recent actions with the letter and Petitions is simple:

The old 2019 review is now 2 years past the promised time for its replacement and should be withdrawn now.

And we are asking for the new review teams to resume monthly reporting and complete to publication within the next year.

Given that Cochrane's Editor in Chief announced this process as a flagship new approach with public involvement, and appointed a senior editor to oversee it, I think it is disgraceful that they are now refusing to have anything to do with it and are passing the buck to the IAG, which was only originally intended as an advisory group.

 

This is Cochrane trying to close down further comment on the review - given we have emailed a considerable number of people involved in Cochrane I wonder if there have been any behind the scenes discussions. But I suspect not. The way I would rephrase it for them would be that Cochrane do not care about the quality of any reviews and seek to close down any comment if those who write the review are happy with it.

Overall this statement could be very damaging for their brand in the long term.

They then go on to try to blame the IAG who they have now put in a very difficult position of making them responsible and trying to make them accountable for cleaning up Cochranes' mistakes. Again a very bad look in that it suggests a very weak editorial process - which again should damage trust in their brand in the long term.

 

For an organisation set up to provide up-to-date systematic reviews on treatments for all diseases, all they really are is a publishing house that specialises in systematic reviews.

But they are also a UK registered charity, whose stated aim is primarily about the "protection and preservation of public health" (Cochrane's charitable objects)

In this instance and I suspect in all others, they are putting their unwillingness to withdraw an existing review above public health. They seem to care more about not upsetting review writing teams who have refused to retract or withdraw their outdated and incorrect reviews than about public health. The same has happened over the awful masks review that has harmed people during the pandemic. See this thread.

I think the senior editorial team have lost sight of public health and are more concerned with status, empire building and never admitting they are wrong.
The empire can't crumble fast enough, if these examples are typical.

 

That's a good question, Duncan. The masks review fiasco has reached other media, but ours is very unlikely to. I think the Charity Commission should be informed, and it would be good to get some wider cut through among medical media, but I don't think the general public media is a good target as they will inevitably look to the usual suspects for comment and it would be likely to backfire on us.

 

I think it could be pointed out to the Charity Commission that Cochrane's methodology of basing recommendations only on clinical trials, and not taking into account data that contradicts the findings, and prioritising review teams egos over public health, is contrary to Cochrane's charitable purpose.

Giving the examples of the masks one where they focused on old trials of flu transmission (droplet infection) and ignoring epidemiological data from public health measures and the fact that Covid is airborne transmission, which leads to the opposite conclusions. Similarly but different in ME/CFS Cochrane are supporting a flawed review that is based on subjective outcomes in open trials, and ignoring objective outcomes and harms data.

Edit: I'm sure you've done that already, but I think the masks one strengthens our case.

 

Are the UK offices of Cochrane the only target with respect to challenging their actions as a charity?

Is there scope to query the Norwegian branch's performance as a charity? Or another branch?

Is that up to date, I forget which university was to be their new home. Perhaps we can make people at that university aware?

@Caroline Struthers - do you think a complaint from us (or 50 ME/CFS organisations) could achieve anything?