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

I have posted the following on Hilda's talkpage:
trishrhymes
December 19, 2024 at 2:01 am
Your comment is awaiting moderation.

Thank you, Hilda. I wish the IAG members well with your deliberations.

I expect the IAG have already raised the following, but in case not, here are some of the things I’d like the IAG to clarify publicly, and/or do next:

The Protocol:

Did the draft protocol reach the stage where the IAG had a chance to comment on it?

If so, can you give us any feedback on it,

If not, did Cochrane explain why not?

Will you encourage the writing group to publish it is soon as possible, perhaps on a preprint site.

The IAG consultation document on problems with previous reviews

Will you publish this document?

Will you submit it to Cochrane to be published as a ‘Comment’ on the 2019 review?

Editors note for the 2019 review

You announced about a year ago the the editors had agreed that the IAG provide them with an editors note to be attached to the 2019 review. Can you tell us what your draft note said, and whether the editors have agreed to post it?

Formal complaint to Cochrane about the decision to cancel the new review

Will the IAG make a formal complaint?

If so, will that complaint include:

the shabby way their work and goodwill have been abused,

the inconsistency between the Editor in Chief’s reasons given for needing a new protocol and review and this week’s announcement, and .

asking for the 2019 review to be withdrawn.

Reasons for Cochrane’s refusal to withdraw the 2019 review:

Hilda, you said on this talkpage a long time ago, that you understand Cochrane’s reasons for refusing to withdraw the review, though you have also made it clear that you think it should be withdrawn. You said back then that you would try to explain Cochrane’s reasons. Can you please do so now? Do you think those reasons still stand, given they are now refusing to proceed with the new review?

Why have Cochrane acted this way?

I am at a complete loss to make sense of Cochrane’s stated reasons for cancelling this project.

The reasons given are clearly nonsense, since they directly contradict all that was said when the project started, and the claim that there is no new research is bogus.

Can you give us any insight into their thinking?

The S4ME complaints. Do you have any information you can share about why we have not had any informatoin on the progress or outcome of our complaints?

Thank you.

Trish Davis
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Trish said:
This is Hilda's message posted on her talkpage:
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/
12/18/2024
Brief message
Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.

On behalf of the Independent Advisory Group
____________

Hilda has now allowed my string of messages that have been waiting since as long ago as September without any requests for edits before allowing them.

Here is her response to one of them:

And to another one:


And part of a reply to @Peter Trewhitt


And her reply to my latest post expressing shock at Cochrane's decision:

I choose to see Hilda as honestly disagreeing with Cochrane's decision, and wanting to do something about it. She says she's going to discuss it with the IAG.

Hilda has also informed me that she is not taking down the Talkpage and is keeping the email address which she, not Cochrane has access to:
cochrane.iag@gmail.com
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I can't really take what she says seriously, especially as she says this:
there was a lot of activity
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And we have literally not seen a single thing in 5 years. Not a damn bit of that alleged work.

This is not the way to do anything. Even generically, but from an organization that regularly boasts of consumer engagement in a project framed as a better example of it moving forward to have been completely silent and opaque makes those claims have zero credibility.

This has been a ridiculous process from a ridiculous organization from the start and it continues to be.
 
rvallee said:
licensing from their library. I don't know if we can muster the workload to attack both, but I think this is the winning strategy
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There is an ongoing investigation into my allegation against Karla SW by a Wiley research integrity team. I have no idea if they will uphold my allegation, but as they are the ones who sell the Cochrane Library licenses, this whole business is not going to impress them much I wouldn't have thought.
 
rvallee said:
And we have literally not seen a single thing in 5 years. Not a damn bit of that alleged work.
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I tend to believe that there was quite a lot of activity for 3 brief periods.

First Hilda took over a year from early 2020 to mid 2021 to appoint the IAG and for the review writing group to be appointed.

Then in mid 2021 the IAG collated all the criticisms of past and current Cochrane exercise for CFS reviews. They say that created a document that was to form the basis of a public consultation.

Then there was a hiatus of about 2 years, and another brief flurry of activity a year ago in late 2023, resulting in two 'updates'. Hilda said in those updates that she had been involved in discussions with Cochrane over matters peripheral to the process such as the effect of the cochrane reorganisation on editorial supervision for the review, and complains processes.

The IAG was also supposed to be drafting an editors note to to on the 2019 review, and getting a chance to comment on the draft protocol. I have asked whether those happened.

So yes, I do believe Hilda had a couple of spells of a few months of activity.

None of that activity has so far produced anything tangible that we can see.

Edit: Also the writing group produced and submitted to Cochrane the draft protocol. That would have been quite a bit of work.
 
Peter Trewhitt said:
@dave30th has posted a new piece in the Trial by Error series that brilliantly excoriates Cochrane’s decision to abandon the new exercise review process, whilst still not withdrawing the the flawed 2019 version.

see https://virology.ws/2024/12/17/trial-by-error-cochrane-tells-me-cfs-patients-to-go-f-k-themselves/

(don’t know if this also needs posting in any other threads)
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Well I always suspected the purpose of the 'update' might only have been to be able say/give some, any, excuse for leaving something flawed up in response to the original not staying withdrawn 'it's OK because ...'

and then of course they implemented a 'no withdrawals' was it clause or policy? pretty soon around that time.

I feel this one should be exempt anyway because it had been withdrawn and the only reason it feels it was put back up was justified by it won't be there for long without a significant update. If something is 'in that process' and apparently 'unwithdrawn on the basis of x promise' (which then never happens) then the withdrawal 'question' actually occured before said policy or whatever? and now of course it turns out they don't intend to do an update in the one way promise that was to convince people it was OK to keep it well that context reverts back to where it was?

There's been a lot of 'shiny keys' and ignoring with a few distractions thrown in, but in result nothing has actually changed in the validity of that review or the context around it ever since. Just a hope that people would either forget or think it was more complicated than it is due to the breadcrumbing of the last 5yrs?
 
We have posted a new petition update:

Cochrane abandons the replacement review
19 Dec 2024

Cochrane cancels the review update

A year after Hilda Bastian's last update from the Independent Advisory Group, and months after she last responded to any posts on her talkpage, Cochrane has made the following announcement:

*******

Cochrane's Update on ‘Exercise therapy for chronic fatigue syndrome’

Monday, December 16, 2024

"In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.

Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered."

***********

Sadly, we are not at all surprised by Cochrane's reneging on their promise of a new updated review while they leave the 2019 review in place. They are clearly influenced by some of their leaders who are well known to support the psychobehavioural view of ME/CFS. No prospect of a new Cochrane review makes removal of the harmful 2019 review even more vital.

Just days before this announcement, the committee and members of Science for ME wrote to all the members of the Independent Advisory Group asking them to urge Cochrane to withdraw the 2019 review - see the letter here.

The IAG and the members of the review writing group have had their goodwill and efforts badly misused by Cochrane. We hope they will now speak publicly, urging Cochrane to act with scientific integrity and humanity by withdrawing the 2019 review.

Thanks
Thank you to all of you who have supported the campaign - we have seen a surge in petition numbers and comments lately. Please keep sharing the link. If you have contact with any funders of Cochrane, please inform them of the failure of Cochrane's quality control mechanisms.

Thanks to #ThereForME, an advocacy group calling for better care from the United Kingdom public health system for people with ME/CFS and Long Covid.
And thanks to the United Kingdom Members of Parliament in the All Party Parliamentary Group on ME. The addition of these two organisation brings the total number of supporting organisations to 79, from 25 countries.

We hope that Cochrane's abandonment of a replacement review process will allow those patient charities that were previously constrained by their involvement in the IAG to now add their names in support of the call for the 2019 review to be withdrawn.
 
Hilda has responded on her talkpage to my latest post there. She reveals that:
"The protocol hadn’t been sent to the IAG yet. (I haven’t seen it either.)"

To me that shows just how badly Cochrane have failed again. The review writing group submitted their draft protocol to Cochrane in February 2023. As I understand it, they have heard nothing since then. Now we hear Cochrane editors haven't even passed it to the IAG in all that time, despite reviewing the protocol being a major part of the IAG's alotted role.

My guess is Cochrane took a quick look at the protocol, realised it would lead to revealing that GET is useless and harmful, and panicked. (I guess the protocol included looking at long term follow up data, objective outcomes and other sources of harms data besides clinical trials, not just short term subjective outcomes). Their solution, which is highly unethical and unprofessional, has been to sit on it for nearly 2 years, then cancel the project on ridiculous and inaccurate grounds.

I think we have plenty of grounds for another complaint to Cochrane. I note in the complaints procedures there is something about not responding to complaints if they are part of an orchestrated campaign (I need to look that up), so it's probably best if we don't all send in individual complaints. Though I would love there to be a really good well argued complaint submitted by a group of medical and scientific professionals.
 
Trish said:
I note in the complaints procedures there is something about not responding to complaints if they are part of an orchestrated campaign
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This is outrageous, as a policy. People conduct coordinated campaigns when people in power perpetrate a major injustice and then refuse to answer to criticism. A pre-emptive policy refusing to respond to their complaints is just another two fingers up to the powerless.

Though I would love there to be a really good well argued complaint submitted by a group of medical and scientific professionals.
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I don't see why we should be playing by Cochrane's rules at this stage. I'd like to to see exactly what you suggest, and I'd like to see the complaint sent simultaneously to individuals (another thing that Cochrane have tried to forbid).
 
I just saw a new editorial note has been appended to the review (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full), which, while transparent about "ceasing the production of a full update of this Cochrane review", now gives the Larun et al. 2019 review a publication date of 19 December 2024.

The version history (at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable) states: "2024 Dec 19 New citation required but conclusions have not changed".

This also means critical comments addressing Larun et al. 2019, including a new, recent one from just two days ago all carry a note stating "This comment relates to a previous version of this review"

So we will now see citations of Larun et al. 2024 spring up in the literature.
 
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MatthiasRiem said:
I just saw a new editorial note has been appended to the review (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full), which, while transparent about "ceasing the production of a full update of this Cochrane review", now gives the Larun et al. 2019 review a publication date of 19 December 2024.

The version history (at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable) states: "2024 Dec 19 New citation required but conclusions have not changed".

This also means critical comments addressing Larun et al. 2019, including a new, recent one from just two days ago all carry a note stating "This comment relates to a previous version of this review"

So we will now see citations of Larun et al. 2024 spring up in the literature.
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That's a disgraceful con trick. So we need to submit new 'comments' to the so called 2024 review.
Unbelievable. I had no idea professional people could stoop so low.
 
Trish said:
Hilda has responded on her talkpage to my latest post there. She reveals that:
"The protocol hadn’t been sent to the IAG yet. (I haven’t seen it either.)"

To me that shows just how badly Cochrane have failed again. The review writing group submitted their draft protocol to Cochrane in February 2023. As I understand it, they have heard nothing since then. Now we hear Cochrane editors haven't even passed it to the IAG in all that time, despite reviewing the protocol being a major part of the IAG's alotted role.

My guess is Cochrane took a quick look at the protocol, realised it would lead to revealing that GET is useless and harmful, and panicked. (I guess the protocol included looking at long term follow up data, objective outcomes and other sources of harms data besides clinical trials, not just short term subjective outcomes). Their solution, which is highly unethical and unprofessional, has been to sit on it for nearly 2 years, then cancel the project on ridiculous and inaccurate grounds.

I think we have plenty of grounds for another complaint to Cochrane. I note in the complaints procedures there is something about not responding to complaints if they are part of an orchestrated campaign (I need to look that up), so it's probably best if we don't all send in individual complaints. Though I would love there to be a really good well argued complaint submitted by a group of medical and scientific professionals.
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The FOI from after the Nice guidelines showing for example someone getting in contact with Gillian Leng who all we technically know is they were from certain royal colleges talking about how the using the longest timeframe and being really angry about the 135weeks measure springs to mind. Would it be worth linking to these (particularly the ones talking about eg methods/protocol) from this thread?
 
Sasha said:
This is outrageous, as a policy. People conduct coordinated campaigns when people in power perpetrate a major injustice and then refuse to answer to criticism. A pre-emptive policy refusing to respond to their complaints is just another two fingers up to the powerless.



I don't see why we should be playing by Cochrane's rules at this stage. I'd like to to see exactly what you suggest, and I'd like to see the complaint sent simultaneously to individuals (another thing that Cochrane have tried to forbid).
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It’s also knowing how disabling me/cfs and deliberately pushing those buttons to reduce access for those with this dusability by doing the opposite of reasonable adjustments- maybe we need a term fir when people create barriers and make access harder for those more disabled

Plus of course it’s just the very common silencing which is accepted as par for the course to do to pwme but would be abuse to anyone else.

if you are going to invent new bs like that then they should be required to define what they say counts as that - two letters from two pwme? Or forty? Is it disabled people being provided templates to allow them to access their rights or petitions given they can’t write individual letters but absolutely as people harmed have a right to agree with one already written ?

And of course why - and requiring that as they’ve given themselves something they aren’t permitted at all as a new coercive threat why people legal right to complain shouldn’t be used, definitely sounds like something for MPs to be getting involved with persuing and putting light on (as disinfectant)
 
MatthiasRiem said:
I just saw a new editorial note has been appended to the review (see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full), which, while transparent about "ceasing the production of a full update of this Cochrane review", now gives the Larun et al. 2019 review a publication date of 19 December 2024.

The version history (at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/information#versionTable) states: "2024 Dec 19 New citation required but conclusions have not changed".

This also means critical comments addressing Larun et al. 2019, including a new, recent one from just two days ago all carry a note stating "This comment relates to a previous version of this review"

So we will now see citations of Larun et al. 2024 spring up in the literature.
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That seems almost plain fraudulent to take something completed from what I can see in 2017 and pretend it’s a new 2024 publication :jawdrop: whilst making a point ‘no changes’ - particularly when you look at the 2019 email trail of where the conclusions being warped as they now stay came from ?
 
Trish said:
That's a disgraceful con trick. So we need to submit new 'comments' to the so called 2024 review.
Unbelievable. I had no idea professional people could stoop so low.
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You can imagine what the first comment would needs to be - and ‘something washing’ where people republish something bad in order to try and wash off the peer reviews sounds like a term needed

is ‘Cochrane washing’ too on the nose ?

Or is it specific to specific names in Cochrane from a specific area
 
I've posted this on Hilda's talkpage:
trishrhymes
December 19, 2024 at 11:10 pm
Your comment is awaiting moderation.

Thanks Hilda.

UN-BE-LIEV-ABLE

I have just seen the latest con trick Cochrane have played. There is now a new 2024 version of the Larun review, which is just the 2019 review with a new editors note saying the update has been cancelled.

Are they allowed to do that? Have they ever done that before with any other reviews? Does this mean the Larun review gets published again as if it were a new version? What do the publishers think of such tricks? What happens to the critical comments such as Michiel Tack’s detailed critique of the 2019 review? Do people have to start again submitting comments?

I’m reeling from all these shocks Cochrane keeps throwing at us. From this end of the telescope It feels like a hate campaign directed at sick people.

In bewilderment,

Trish
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What happens to the critical comments such as Michiel Tack’s detailed critique of the 2019 review? Do people have to start again submitting comments?
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Presumably people that previously submitted comments on the 2019 version of Larun et al just submit again exactly the same comments with an added sentence saying these points apply equally to this purportedly new 2024 edition even though it is identical to the 2019 redraft which Cochrane in 2019 accepted as failing to address the issues of the previous 2015/2016 version.

After all what is sauce for the goose is sauce for the gander.
 
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