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

I have been looking at today's letter, # 233 this thread, and am confused.

The second sentence says the matter is closed but I'm not exactly sure what matter it is referring to since the following sentence says that any new concerns go to the IAG which can take into consideration our requests. That suggests it is open.

It also says that the IAG is addressing other questions but no indication of their scope is given. Does the IAG wish for patient input on these other issues? If so, we need to know what they are.
Does Cochrane follow a process because all this seems very confusing?
Who is in charge of all this? The CEO, the Editor in Chief or Hilda Bastian as Chair of the IAG?
 
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Binkie4 said:
I have been looking at today's letter and am confused.

The second sentence says the matter is closed but I'm not exactly sure what matter it is referring to since the following sentence says that any new concerns go to the IAG which can take into consideration our requests. That suggests it is open.

It also says that the IAG is addressing other questions but no indication of their scope is given. Does the IAG wish for patient input on these other issues? If so, we need to know what they are.
Does Cochrane follow a process because all this seems very confusing?
Who is in charge of all this? The CEO, the Editor in Chief or Hilda Bastian as Chair of the IAG?
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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.
 
Binkie4 said:
I have been looking at today's letter, # 233 this thread, and am confused.

The second sentence says the matter is closed but I'm not exactly sure what matter it is referring to since the following sentence says that any new concerns go to the IAG which can take into consideration our requests. That suggests it is open.

It also says that the IAG is addressing other questions but no indication of their scope is given. Does the IAG wish for patient input on these other issues? If so, we need to know what they are.
Does Cochrane follow a process because all this seems very confusing?
Who is in charge of all this? The CEO, the Editor in Chief or Hilda Bastian as Chair of the IAG?
Click to expand...


And - given the complaint is asking to withdraw the flawed report and the IAG is for a different thing, ‘the review’ - isn’t this just the same distraction rudeness where rather than answer the request to withdraw failed crap and at least have the decency to acknowledge that’s what us being discussed they won’t even discuss the f-ing thing in the petition and and being antagonist by only pointing to a group who work on something entirely different.

how dare they suggest you point to a failed new report that began in 2021 and got nowhere and is nothing to do and the staff nothing to do with the report that ended 2yes before that snd us being asked to be withdrawn

what a bunch of rude antagonists.

we don’t even deserve for them to acknowledge- despite it being in writing now hundreds of times which report the request is about and are still try to whistle and pretend they don’t understand snd ‘are mixed up’ with ‘do you mean this other nonsense review’ from three years later send your enquiries to a team who deals with s different report and not the proper as per any organisational obligation processcteam.

someone needs to write back and tell them why they when asked about one report snd it’s being so flawed it needs to be withdrawn they can’t even have he decency to suggest contacts that relate to it rather than playing ‘I’m confused do you mean this other report?’


It’s like someone complaining about swimming lessons to a pool and getting a reply telling them to speak to the vending machine people in future

the IAG have nothing to do with the report in the petition and are not responsible for investigating the issues and due process mentioned in the petition- so WHY other than rudeness and distraction are they banging on about a different thing entirely that currently doesn’t exist anyway other than in their fake pretence they ‘intend to maybe resurrect something maybe, trust us’

what part does this IAG play in their governance compliance and whistleblowing? And for the old report in question that they have nothing to do with?
 
Trish said:
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.
Click to expand...


They seem to be trying to just muddy the water on what the question even is and which report it was even on.

I think we need to keep underlining which report, the withdrawal request and the reason.

and telling them to please stop replying with nonsense on other things that don’t apply just to distract everyone. If you write in reporting an issue on a heart attack report you don’t expect someone to get away with pretending they’ve not binned that and ignored it because ‘if you want to contact us in future email our cleaning/PE/athletes foot report department’ has been replied

it’s that cross-purpose to the written down query as far as I’m concerned
 
Trish said:
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.
Click to expand...


I don’t think we can assume if there is something that the perceived or actual threat wouldn’t be devastating to such individuals and they’d need someone who could give proper advice to provide any such reassurance or method if so.
 
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.
 
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Trish said:
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.
Click to expand...

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.
 
Trish said:
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.
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I have tried the Charity Commission twice, and the second time they said they would write to Cochrane to remind them of their responsibilities, but then refused to disclose the letter under FOI. I need to go back and challenge this.
 
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?

Cochrane Norway is financed and hosted by the Western Norway University of Applied Sciences.
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Is that up to date, I forget which university was to be their new home. Perhaps we can make people at that university aware?

How to complain
All complaints should be sent to complaints@cochrane.org, where they will be dealt with confidentially.

How we deal with complaints
All complaints will be acknowledged within three working days.

If possible a definitive response will be made within two weeks. If this is not possible an interim response will be given within two weeks. Further interim responses will be provided until the complaint is resolved.

The Cochrane Database of Systematic Reviews is a member of the Committee on Publication Ethics (COPE), and Cochrane will be guided by COPE's core practices and guidelines when handling complaints. Complainants who remain dissatisfied after this procedure has run its course may consider referring the matter to COPE.
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@Caroline Struthers - do you think a complaint from us (or 50 ME/CFS organisations) could achieve anything?
 
Hutan said:
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?
Click to expand...
My latest complaint was about the actions of Karla Soares-Weiser in letting the authors (employed/managed by NIPH's Atle Fretheim) ignore Gordon Guyatt's instruction to explicitly say that Exercise had no clinically relevant effect. It was my way of re-framing the complaint about mistakes in the review to focus on her responsibility for letting the mistakes remain in the review. I don't know what the next step should be to be honest...
 
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