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

Peter Trewhitt said:
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 2015/16/19 version.

After all what is sauce for the goose is sauce for the gander.
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But it needs independent oversight to ensure all submitted are also getting out on there?

given what’s happened in recent years with ‘moderation’ here and in certain publications with certain editors this isn’t just a reasonable question /expectation (which also flags how far the sector has dived over the years) based on habits and behaviour and past policies to expect these norms to apply and not be jettisoned for this illness/those with disability but essential to confirm

perhaps another one for an MP - I keep suggesting this as I remember the post office stuff and how it required MPs to step in and provide oversight that basic rights and norms were being heeded etc

if they publish a reprint of a review so ooor it was withdrawn in 2018 due to valid concerns that have never been squared, as 2024 also thereby removing peer reviews and do end up being selective with comments that get through so it becomes a bps manifesto-fest without critical analysis is that not into the territory of authoritarian type controlled message stuff writing out history and facts etc ? It seems pretty dangerous new territory things could lurch into ‘inadvertently’ - hopefully this is just a mistake from someone who didn’t realise it would create a new version and they’ll take it down pronto ?
 
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Peter Trewhitt said:
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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What would be great would be to get in writing from Cochrane a refusal to publish a reply under the 2024 version of Larun et al on the grounds that it was substantially the same as a reply to the 2019 version.
 
Peter Trewhitt said:
What would be great would be to get in writing from Cochrane a refusal to publish a reply under the 2024 version of Larun et al on the grounds that it was substantially the same as a reply to the 2019 version.
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I think those sending in replies will need to log copies of when they do so.

I don’t know whether there is a possibility of having a ‘something watch’ collecting these to check what indeed does happen re: replies, publishing them, how long the delay is in doing so fir certain ones over others (as ‘delay’ seems to be the classic tactic to pretend it’s not ‘filter’) ?
 
Just clicked that our petition says:

[QUITE]1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.[/QUOTE]

but we now have Larun et al 2024. Obviously a technical point, but one Cochrane would not be above taking advantage of.

( Note - as I posted under the MEA news thread, the MEA has included a prominent section asking people to sign our petition, in their Christmas newsletter emailed to members.)
 
Okay the republishing annoyed me so much I shared the petition on my instagram which has all my friends from before I got sick, many of whom do not know I am sick.

A bit nervous about that but it had to be done.
 
That date change is crazy.

I don't have it in me to do a lot, but I wrote this simple message. I'm not sure who to send it to though.

"I am writing to express my disappointment in Cochrane's action to update the date of the Lurun 2019 review to December 2024 even though no new research was added to warrant this change of date. It would be bad practice in any field for a research paper to be presented as if it were far newer than it was, but it is especially troubling here, where the review in question promotes an intervention known to be harmful and is based on an outdated criteria for ME/CFS. I ask that the publication date of the review be changed back to 2 October 2019."
 
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Peter Trewhitt said:
Just clicked that our petition says:

[QUITE]1. The immediate withdrawal or retraction of the 2019 Cochrane review 'Exercise therapy for chronic fatigue syndrome’ by Larun et al. and all earlier versions.
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but we now have Larun et al 2024. Obviously a technical point, but one Cochrane would not be above taking advantage of.

( Note - as I posted under the MEA news thread, the MEA has included a prominent section asking people to sign our petition, in their Christmas newsletter emailed to members.)[/QUOTE][/QUOTE]
Good spot

I guess could a line like ‘now relabelled as….’
Underline it isn’t ’two Reviews’ anyone is asking to be withdrawn
 
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forestglip said:
That date change is crazy.

I don't have it in me to do a lot, but I wrote this simple message. I'm not sure who to send it to though.

"I am writing to express my disappointment in Cochrane's action to update the date of the Lurun 2019 review to December 2024 even though no new research was added to warrant this change of date. It would be bad practice in any field for a research paper to be presented as if it were far newer than it was, but it is especially troubling here, where the review in question promotes an intervention known to be harmful and is based on an outdated criteria for ME/CFS. I ask that the publication date of the review be changed back to 2 October 2019."
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I think you could submit it to Cochrane complaints.
 
If I go to pubmed and search "exercise cfs review" sorted by most recent it's the first result and says 2024. It's 5th if sorting by best match.

Clicking through to the details with the abstract, which might be the extent of what a lot of people do, gives no indication it is a 2019 paper or that there was a 2024 comment.
Screenshot_20241219-094238.png Screenshot_20241219-094859.png
 
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Trish said:
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.
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I'd estimate there's about a 90%+ chance that this is it. This fantasy stuff can't stand any scrutiny, reviews and even the trials themselves are all done by highly biased individuals who don't want to apply any scrutiny as they understand it makes the magic go away. This was going to be scrutiny.

And they pretty much applied the worst, most obviously culpable behavior in response to it. There was no way to argue that it was too rigorous since all that's needed is to apply their own recommendations and standard criteria without convenient exemptions. Because as is tradition with evidence-based medicine: you change the people who count the votes, you change the outcome of the vote. This group was going to count the real votes, can't have that when you've been winning rigged elections.

Right now they're trying to keep everything opaque and secret. We need to know how this decision was debated and communicated, depending on how much was written down vs voiced in person. Without FOI, apparently. Possibly there are alternative ways to get this in the open, if we can manage to explain to funders and various backers of Cochrane how they behave, how they can't even pretend to have the resources to do competent work, and get them to look at it themselves.
 
Yann04 said:
Do you think they did it on purpose to update the date?

If so that is indeed outrageous.
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100%. "Latest and greatest" review. Without doing any work. Even though it's mostly a 2014 review that relies on even older unreliable studies. Which they acknowledged, and now erased from the record unless you know where to look for. Devious and malicious.

And the next wave of argument following this and a few just-as-awful studies and reviews of the same for Long Covid is obvious, and I've already seen it written exactly this way by this horrible German Kleinshnitz fella: there are several studies showing the efficacy of exercise rehabilitation, and not a single trial showing any effective drug, therefore only generic rehabilitation is worth pursuing.

And the death of expertise accelerates. There's always more clowns in that clown car.
 
Reuters pulled something similar when it corrected (they claimed it was an "update") their 2018 hit piece about me and others who criticized Michael Sharpe. They messed up my academic credentials, and then added that later with a new date and sent it out all over again to get an entire new round of readers. Whitewashing the past to get rid of the critical detritus and generate new, uncritical attention. Cochrane has just done the same.
 
JohnTheJack said:
Has any contact been made with Iain Chalmers? It might be worth a try. He would at least carry moral weight.
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I contacted Chalmers around the time I reviewed a version of the Larun review that never saw the light of day, expressing concerns about conflicts of interest. His reply indicated that my suggestion was deeply offensive and inappropriate.
 
Jonathan Edwards said:
I contacted Chalmers around the time I reviewed a version of the Larun review that never saw the light of day, expressing concerns about conflicts of interest. His reply indicated that my suggestion was deeply offensive and inappropriate.
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He is not a fan of people with ME. Or maybe he's just a fan of the BPS crowd. Co-founders of Cochrane like Garner, Glasziou and Wessely
 
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