2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Yes indeed

and it is just a distract from the actual question being asked tactic.

This is the excuse (why it happened) that comes after they should have corrected the date on the basis it was inappropriate/misleading with regard to why dates are on journals or reviews in the first place: the reflect when the work was done and how recent the material reviewed is

it is an old review from 2017, then labelled 2019 that only included pre-2015 papers and methods

that they’ve relabelled 2024

and know full well that misleads reader to think some amend or update would have taken place to make it worthy of a new date

to write back with tosh about ‘didn’t do it deliberately’ or ‘because it was convenient for us’ doesn’t make it any more appropriate or correct - so it should be corrected


You wouldn’t offer a reprint with a new issue number on it if it was a print version/book - because there is nothing new

and it isn’t a latest review - which is the material they won’t release of that latest protocol done by the writing group that they held onto for over a year before deciding to junk ‘the update’ to not release . So they haven’t attached any of the latest material even if what they did , nevermind mentioning new research that would/should be in any review since 2014/5 cut off this related one really only includes

I think being misleading trumps any of these distractions of supposed ‘why it happened’ in the real question of ‘what is justified/appropruate/needing to be met to accord such a date’

 

Also there are examples where Cochrane have amended editorial notes without altering the publication date, for example with this very review in January 2025. Indeed it may be that changing the date in such circumstances is the outlier not the norm for Cochrane.

What is it about the CFS Exercise review that requires Cochrane to alter its editorial practices? The extreme being when the previous editor in chief, Tovey, was planning to withdraw an early edition, Cochrane altered its policies to make it harder for a review to be withdrawn.

 

Ridiculous nonsense. This organization is completely unserious and has no principles.

 

If I recall correctly the planned update did not require a note with a new DOI. So it's rather strange to argue that they wanted a new citation to highlight the cancellation of the update.

 

Something different:

On the Retraction Watch article on the Cochrane review, I noticed this comment:

I wonder if this is
Meredith Warshaw
Center for Biostatistics in AIDS Research, Harvard School of Public Health
‪Meredith Warshaw‬ - ‪Google Scholar‬

 

She fits the bill.

I found this based on her LinkedIn, she has done some work in psychiatry and special needs education before getting into HIV/AIDS. She might be sympathetic to ME/CFS?

https://uniquelygifted.org/resume.htm

 

This is her previous comment:

Cochrane has forfeited all credibility. I read the the major study out of England of graded exercise therapy and it was appallingly bad. Among other things, the investigators changed their definition of remission from what was specified in the protocol in such a way that people could do worse after treatment yet meet the benchmark score for remission. Reviewers should never have approved their papers for publication, and Cochrane’s own reviewers should have recognized that the shoddy quality of the work meant it shouldn’t be included in any reviews or meta-analyses.

 

wow, I went to high school with Meredith but haven't seen her in years. I sent her the PACE trial when I was first working on it to get her input, and she's definitely sympathetic.

 

Yes, I sent Meredith the PACE trial way back then. We have occasional contact on Facebook.

 

I was thinking this - that it doesn’t mean they think the methodology was a problem

and their latest stuff has simply rebranded with the same old assumptions underlying things

but I can see why they’d want that rebrand included

It’s not the same as hearing them talk about seeing the light on method and information issues , and indeed on respect when pwme submit proper feedback and it being heard as intended etc

I think if we started seeing proper changes along those lines I’d feel it was more about hearing the issue with harm and outcomes and wanting to ‘get things’ better

I am interested however in it seeming the approach of the IAG might have been to agree a message they could all cooerdinate on?

 

I'm thinking they probably see some value in separating PEM vs non-PEM to preserve their industry and income streams. Even though it makes zero difference, which is actually the main takeaway. But by emphasizing that it's the problem, they keep the problem afloat with a distinction that no one can reliably identify.

So if the issue is only that PEM is different, they can continue 'duing' the same ritual crap while claiming that if it doesn't work, it's because of PEM and, my guess again, you need CBT, not GET. They simply insist that it works for 'fatigue'.

Or something like it. I can't ever see good intentions out of this industry. It's built to be parasitic and can't change. Its only valuable future is to fold and stop the grift, but these people made their career out of it so they can't let go. Especially so because their skills are entirely worthless anywhere else.

 

Yes I’ve seen in other places that certain clinic’s have used their fatigue clinic model to eg get grants from cancer charities or maybe nhs to offer courses for fatigue post cancer

and then there is FND

and the PPS clinics

interesting question here about whether there is becoming a competitive market between these, and with those specific entities who chose not to change then say ‘it’s ok if harms me/cfs cos we just serve cfs/me’ etc?

ie how do BACME actually dovetail with those of that strategy?


plus of course it’s that feeling the long covid money /funding impacts things and there of course there has been a bit more differentiating by mentioning PEM - even though I’m not sure we are sure all those mentioning PEM in LC mean the same thing as we do by PEM

it would be interesting to break down the players in this market and if they all overlap with BACME?