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

Hutan said:
Just noting the timing of this announcement, days before Christmas. I doubt that was chance. It's like how governments drop bad news on a Friday, knowing that the journalists won't be working for two days, and hoping that by Monday everyone's attention will be on the next thing.
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Today, 19th Jan 2024, is the date parliamentary recess for christmas begins until 6th Jan
 
rvallee said:
It's kind of funny how "peer review" is held up as some sort of authority when it explicitly translates into "no oversight" and sometimes can be "my buddy down the hall".

When you've seen enough of this, "was it peer-reviewed?" is such an inane comment since it does not provide any actual quality control. This system has held up on the fiction of academics being better people than the average Joe, and in this case we have the double appeal to authority of "doctors wouldn't do something to harm their patients", when actually both propositions are complete fantasy.

It should be like that. Just like all police officers should be ethical people and judges should have, you know, good judgment, but in reality no system can ever work like that. And this remains true, academia functions like this, but it doesn't work. In truth, peer review has even less value than a "QC passed" sticker on a piece of technology. It may mean that this part works, according to the manufacturer, and that's all it really means.
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beyond that, even if they are [ethical people who put some effort into believing that having integrity is something you either have or don't, and doing one thing without caring enough to check could indeed lose that etc], with the hierarchy and the reactions certain individuals always take (often involving name-calling at the least) to anything not fawning and which might be critique then even if you were brave enough to take a risk on your own career your boss etc mightn't. Such temperaments are rarely an accident, they tend to stay that way because of what they achieve for those who behave in that way.
 
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Whatever shreds of doubt there were left about how utterly corrupted Cochrane have become by the psychosomatic cult, they have been completely removed.

Gutless, dishonest, abusive hacks.

Particularly cruel to do this just before Christmas.
 
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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Gosh.
 
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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Of course he did. He birthed this monstrous institution. Why would he allow you to inform him his giant baby was taking bites out of the little one’s at nursery, when that’s exactly what he raised big boy to do.
 
Sean said:
Whatever shreds of doubt there were left about how utterly corrupted Cochrane have become by the psychosomatic cult, they have been completely removed.

Gutless, dishonest, abusive hacks.

Particularly cruel to do this just before Christmas.
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Yeah they’re a bad lot.
I don’t think they’ve become it this is what they’ve always been at heart. It’s just that being resource strapped and such they’ve done away with the veneer of pleasantry and propriety.
 
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I can't see if you mention on the petition that the most 'up to date' research in the 2019 (now 2024) review is from 2011.


eta:
also, as pointed out in other threads, the Cochrane database entries for CFS were not properly kept up to date by the 'Mental' group, and many rcts were omitted eg workwell stuff. I haven't gone over this, but I remember discussing it on a thread with @Caroline Struthers .
 
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Trish said:
I don't think we go into that amount of detail about the content of the review.
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If we are doing an update on the petition to explain the date change would it be worth adding a sentence saying something like “However no matter which publication date is attached to the current Exercise review, beit 2019 or 2024 it is worth noting that the content of this review is based on a literature search undertaken in 2014 and contains no source material more recent than the 2011 PACE study write up”.

This is potentially significant as I read one of Cochrane’s excuse for abandoning any new review as being there are no more recent studies since 2019, whereas it is since 2014 that is relevant. (We know that no studies since 2019 is a lie as there is the Crawley et al paper, but are there also other relevant studies since 2014?) This also means that though there is an attached 2024 date, this review is based on a literature [review] that predates by some years that used by NICE in their evidence review published with the new guidelines in 2021.

[edited to add the word review shown in square brackets]
 
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Thanks for raising that issue of being out of date, @SlySaint. I agree it's an issue to be covered in tackling what to do next, including possibliities of lodging a complaint to Cochrane, and or a Comment to Cochrane and possible complaints to funders and the Charity Commission. It could also be included in a petition update. i'll make sure the committee considers it in any action we take next.
 
Peter Trewhitt said:
If we are doing an update on the petition to explain the date change would it be worth adding a sentence saying something like “However no matter which publication date is attached to the current Exercise review, be it 2019 or 2024 it is worth noting that the content of this review is based on a literature search undertaken in 2014 and contains no source material more recent than the 2011 PACE study write up”.
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I agree with this. It is an important relevant fact that might get more people's attention and support.
 
Given the Larun et al (whichever of the arbitrary dates you want to attach) is largely based on the PACE data what we are seeing here is the ongoing battle of Wessely supporters trying to save PACE. The Cochrane review, now with a misleading 2024 publication date, is just fancy window dressing to escape the enormous controversy over PACE whilst still pushing its false conclusions.
 
Hutan said:
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:

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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.
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Peter Trewhitt said:
Given the Larun et al (whichever of the arbitrary dates you want to attach) is largely based on the PACE data what we are seeing here is the ongoing battle of Wessely supporters trying to save PACE. The Cochrane review, now with a misleading 2024 publication date, is just fancy window dressing to escape the enormous controversy over PACE whilst still pushing its false conclusions.
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This.
 
Peter Trewhitt said:
Given the Larun et al (whichever of the arbitrary dates you want to attach) is largely based on the PACE data what we are seeing here is the ongoing battle of Wessely supporters trying to save PACE. The Cochrane review, now with a misleading 2024 publication date, is just fancy window dressing to escape the enormous controversy over PACE whilst still pushing its false conclusions.
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I think it plays a role but not that big. Even if PACE were retracted, there's been loads of new trials held since. All small and with even lower standards than PACE. The ideologues would simply point to those. In fact they already do. And if needed, Cochrane would just expedite a review using those. Even if they just claimed here that nothing new happened since.

Of course they'd rather it stands, but remember that facts absolutely don't matter here. PACE was debunked many ways and it made zero difference. Retraction is technically a formality because of this, and even if it were, the ideologues would still insist that it was a well-designed trial, which seems to be the universal "doesn't matter that this checks every single what-not-to-do box" excuse.

Obviously the OG quacks here played a significant role, but Long Covid has proven that this is an indutry-wide crisis, with hundreds of teams independently producing the same garbage pseudoscience, behaving the same way with all criticisms and the same total systemic failure in clinical practice and research alike. If it wasn't them and PACE, it would be some other group with some other garbage low-quality high-bias handful of trials. The flaw is in the whole profession, in its institutions and it being driven by secretive policies far more than science.
 
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