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

Today, 19th Jan 2024, is the date parliamentary recess for christmas begins until 6th Jan

 

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.

 

classic is late on a Friday afternoon

 

Gosh.

 

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.

 

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.

 

Now 13’650 signatures

 

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 .

 

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]

 

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.

 

Further context - I think it's also 50 something working days since the publication of the Regulation 28 Prevention of Future Deaths Report regarding Maeve Boothby O'Neill. NHS England » Action to Prevent Future Deaths reports (Regulation 28).

The importance of complaining and recording dates can now be seen from space.

 

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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.