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

Medfeb said:
Do the last two lines suggest Cochrane is planning to repeat the review themselves?
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I would have thought the wording is pretty standard, that they reserve the right to use the material in another review themselves, without necessarily implying Cochrane has any intention of doing so in the near future.

Those with vested interests in retaining the pro exercise recommendations are happy with Larun et al as it stands, indeed they have been fighting against any replacement being produced, so I doubt anyone pushing against the new review process happening will be wanting anything new being produced unless circumstances change dramatically.
 
Medfeb said:
1) whether a review by another group would just accepted or just dismissed, favoring the Cochrane review.
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Cochrane's standing in the world of clinical guidance has been taking quite a hit. And with each year that passes, and with the strengthening of the acceptance of ME/CFS as the disease name, a 2019 review of exercise for chronic fatigue syndrome becomes more and more irrelevant. I think a new review by a non-Cochrane endorsed team would be very useful. People without a prior allegiance, such as independent reviewers of evidence for national guidelines, would likely give the most recent review a fair bit of attention. The Larun review is easily dismissed as both old and indirect with respect to a disease population with PEM.

It would be fabulous if a new review could be written in the next year, when it might be of use for the Australian guidelines. I'd be very happy to join a writing team if there were gaps that needed filling, and there are probably others interested here too.
 
ME/CFS Skeptic said:
Quite disrespectful to the people in the ME/CFS community who worked on this as part of the author team or IAG.
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Peter Trewhitt said:
I suspect originally they thought a new review would be a good idea until they saw the draft protocol and realised no serious review of the science would ever keep the exercise obsessives amongst them happy.
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bobbler said:
And if there is no new research then the need to withdraw is even more required
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Snow Leopard said:
It is clear the decision was based on internal politics rather than the science.
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Hutan said:
There's no way that the psychosomatic crowd could have a new Cochrane review coming out in the next couple of years saying that GET doesn't work. I think Cochrane pulling the pin on the new review is an acknowledgement that someone influential is not confident that it would find the "right" answer.
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Wot they sed.
Hutan said:
Cochrane's standing in the world of clinical guidance has been taking quite a hit. And with each year that passes, and with the strengthening of the acceptance of ME/CFS as the disease name, a 2019 review of exercise for chronic fatigue syndrome becomes more and more irrelevant. I think a new review by a non-Cochrane endorsed team would be very useful. People without a prior allegiance, such as independent reviewers of evidence for national guidelines, would likely give the most recent review a fair bit of attention. The Larun review is easily dismissed as both old and indirect with respect to a disease population with PEM.

It would be fabulous if a new review could be written in the next year, when it might be of use for the Australian guidelines. I'd be very happy to join a writing team if there were gaps that needed filling, and there are probably others interested here too.
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And this.
 
bobbler said:
Are they actually’bought out’ of their uni contract like eg a research project would do for x % of their time fir x months etc?
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I suspect that its done via the university (so the university can claim overheads) so they are working for the university with their time being paid for that would otherwise have been allocated to other things.
 
I have just posted this on Hilda's talkpage, which I suspect she will take down now that the process is cancelled:

trishrhymes
December 18, 2024 at 9:30 am
Your comment is awaiting moderation.

Hello Hilda,

I am shocked, but not really surprised by Cochrane management’s decision to scrap the new review. They have let people with ME/CFS down very badly, having strung us along with 5 years of obfuscation and inactivity. I hope you will lead the IAG in protesting in the strongest possible terms at they way their goodwill and efforts have been abused by Cochrane.

I hope now that the new review is scrapped, the editors will turn their attention to a proper look at the evidence that exercise therapy causes significant harm, and is ineffective for people with ME/CFS, and act with scientific integrity and humanity by withdrawing the 2019 Larun review.

It is notable, and shameful, that in all the Science for ME attempts to hold a polite and professional conversation with Cochrane, they have never answered any of our questions, nor have they acknowledged that they understand the severity of harm that exercise therapy has caused to thousands of people with ME/CFS. Nor have they had the courtesy or professionalism to consider in a timely fashion complaints we made over a year ago. We still await the outcome.

I assume this decison by Cochrane releases you from any commitment to confidentiality and you will be able to give people with ME/CFS an honest and frank account of what has been happening behind the scenes, and why the whole process has been such a car crash.

Best wishes,

Trish Davis
 
Another small shock from Cochrane. They appear to have taken down all Hilda's updates that were posted on the Cochrane website. The first 3 from May, June and July 2021 have been replaced by yesterday's announcement, and the last 2 from November and december 2023 go to page not found.

I wish someone had archived them.

All I have now is the bits I quoted in our original letter to Cochrane:
https://www.s4me.info/threads/s4me-...-on-the-me-cfs-exercise-therapy-review.34973/

The 2023 links, I retrieved from one of my post on Hilda's talkpage that still awaits moderation, and now doubtless will be deleted:
Hello Hilda,

Given that I already have 3 post awaiting your moderation decision, and nothing has been posted here for 3 months, I have no idea whether this page is still functioning.

However, …

Exactly a year ago you posted your first update for over 2 years on the Cochrane website:

https://community.cochrane.org/orga…older-engagement-high-profile-reviews-pilot-3

Among other things, you said:

As completing the review will take time, the joint Cochrane/IAG meeting discussed a proposal from a member of the IAG for adding a revised editorial note. Some uses of the Cochrane review do not reflect critical nuance and limitations in its conclusions, and the goal of a note would be to try to reduce such misinterpretation. There was unanimous agreement to this step, and the IAG has begun drafting a proposal for the editors’ consideration.

Is this going to happen?

You also said:

The first draft of the protocol is currently with the Cochrane Editorial Unit, and the editors are planning the next steps for the project. Once they sign off on a protocol, the IAG will be reviewing it. Then it will go to peer reviewers, some of whom will be proposed by the IAG. Responses to peer review will also be considered by the IAG.

It will be the version after all that review that will be released as a preprint. We will use our experience with the first consultation to seek, analyse, and report on feedback to the protocol. The consultation period is currently planned to be six weeks after the preprint of the protocol is released. Providing written comments won’t be the only mechanism for discussing the protocol, and we’ll let you know about other opportunities.

Please can you tell us what stage that process has reached.

In your report on 20th December 2023
https://community.cochrane.org/orga…older-engagement-high-profile-reviews-pilot-4

you said:

The revised editorial structure to support this review has taken shape. I expect details will be finalised by my next report, including a preliminary timetable.

We also plan to get the IAG’s first consultation underway in the early weeks of the new year.

Please could you tell us why this hasn’t happened.

On complaints, you said there is a new structure for handling complaints, and added:

We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future.

I recognise the handling of complaints is not your direct responsibility, but you may be able to tell us more about what is happening with S4ME’s complaints. All we’ve heard from Cochrane is that they still haven’t finished considering our complaints. No idea of timescale, nor of which complaints they are considering.

Can you share any news on the S4ME complaints?

And finally…

When do you envisage the new review will be published?

Thank you,

Trish Davis

Reply
 
Trish said:
I have just posted this on Hilda's talkpage, which I suspect she will take down now that the process is cancelled:

trishrhymes
December 18, 2024 at 9:30 am
Your comment is awaiting moderation.

Hello Hilda,

I am shocked, but not really surprised by Cochrane management’s decision to scrap the new review. They have let people with ME/CFS down very badly, having strung us along with 5 years of obfuscation and inactivity. I hope you will lead the IAG in protesting in the strongest possible terms at they way their goodwill and efforts have been abused by Cochrane.

I hope now that the new review is scrapped, the editors will turn their attention to a proper look at the evidence that exercise therapy causes significant harm, and is ineffective for people with ME/CFS, and act with scientific integrity and humanity by withdrawing the 2019 Larun review.

It is notable, and shameful, that in all the Science for ME attempts to hold a polite and professional conversation with Cochrane, they have never answered any of our questions, nor have they acknowledged that they understand the severity of harm that exercise therapy has caused to thousands of people with ME/CFS. Nor have they had the courtesy or professionalism to consider in a timely fashion complaints we made over a year ago. We still await the outcome.

I assume this decison by Cochrane releases you from any commitment to confidentiality and you will be able to give people with ME/CFS an honest and frank account of what has been happening behind the scenes, and why the whole process has been such a car crash.

Best wishes,

Trish Davis
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Well said!
 
Binkie4 said:
Yes but since all the complaints so far have been ignored anyway, I'm not sure the situation has changed. I feel disinclined to jump through Cochrane's hoops by following their restrictions. If anyone has the energy, I would think it worth having a go at writing to whoever it is thought might be useful. I think we should follow our own counsel. I don't recognise Cochrane's right to instruct us as to who we can communicate with.
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Well yeah.
 
Binkie4 said:
Yes but since all the complaints so far have been ignored anyway, I'm not sure the situation has changed. I feel disinclined to jump through Cochrane's hoops by following their restrictions. If anyone has the energy, I would think it worth having a go at writing to whoever it is thought might be useful. I think we should follow our own counsel. I don't recognise Cochrane's right to instruct us as to who we can communicate with.
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I agree that we are under no obligation to follow Cochrane’s injunction to only communicate through their formal complaints channel. Indeed there seems to be little prospect of any communication with their complaints channel achieving any thing other than further obfuscation and prevarication.

The options seem to be:
  • Lobbying individuals within Cochrane who might actually listen
  • Lobbying any of Cochrane’s funders
  • Complaints to the charity commission
  • Complaints to ? (I have forgotten the name of the group that oversees publication standards)
  • General publicity on the relevant issues
  • ?
 
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