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

For me this actually was one of the things that stood out, the clear and open statement that this was indeed going on behind the scenes, that these people were a hinderance to executing the project, and they did that by way of launching "a full-on bid to try to stop the project".

I hope confirmations on who these people were exactly will be disclosed as well, it matters for accountability. Who launched a full-on bid to try to stop the project?

I think Cochrane is being really, really stupid with this. Their whole existence hinges on being a reliable summarizer of available evidence, that's what they do ("Trusted evidence. Informed decisions. Better health.") The ME/CFS project and the mask study can make big, irreparable tears in that sense of reliability as it shows that they do not always uphold their claims, on big issues. And once they lose that, it will be nearly impossible to get back.

 

You're right. And it explains why Larun has started responding to comments again. I will put in another FOI request to NIPH for correspondence between anyone there and Cochrane from June 2019 to now.

 

If I feel up to it I will try to look back over Hilda’s blog posts as at that time she was playing the sophist to avoid writing anything directly critical of Cochrane and in response to my comment(s) seemingly denied that there were any complaints about the new review process that caused a delay. It may be that between what she said and what she denied there are further clues about what happened.

 

Must be, or at least include, the complaint we heard had derailed things for more than a year. Because Cochrane only takes some complaints seriously, in a completely biased way.

 

Oh, for sure. That and the recent flawed "living review" that is entirely dependent on a single trial for which they misapplied the findings. But also no one will bother checking that. And we can point it out and no one who wants this bag of lies to be true will mind. And that's why they keep doing the same identical trials and useless studies. This way everything they do can get debunked and it doesn't matter because by the time it's been debunked they'll have more 'newer' evidence.

Because evidence is irrelevant in evidence-based medicine. And Cochrane is a primary offender of this corruption, this is why they can't let this go. They can't ever cede one bit of ground, endless production of the same BS is the formula they abuse.

 

I tried to make this argument very strongly when I met with David Tovey years ago. I was not able to convince him.

 

Basic question from a non science background.

Does Cochrane have an ethics committee, and are the systematic reviews considered 'research' on human subjects for the purposes of the Declaration of Helsinki (both the 2013 and 13 December 2024 versions?) I'm guessing it does because a protocol was being developed, although the IAG never appears to have seen it.

The reason I ask is because this appears in the new 2024 DoH in the role and function of Ethics Committees section. WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Participants – WMA – The World Medical Association

Section 23

By suspending, as they did days after the publications of the new DoH, they don't have to monitor. The Reg 28 PFD report would be relevant in this context.

The advocates of therapies, bearing in mind the 'anomalies' opinion piece in July 2023 can then continue to argue on the ground of 'risks this against the 2021 NICE Guideline

Sections 17 and 18

Feel free to demolish the relevance of this argument, because I am looking at it from a legal definitions mindset.

ETA: This also ties in with the decision to include reference to FND diagnosis overlay in the UK healthcare professionals training module produced under the ME/CFS Delivery plan, publshed Jan 2025

 

apparently there were several rounds, so Cochrane did provide responses to early drafts of the protocol. Just they didn't respond to the last draft, which was sent in almost 2 years ago now.

 

I tweeted or rather BlueSkyed something along these lines. Hilda responded: "Big question. An answer wouldn't fit in this little box."

Pehaps more will be revealed in time.

 

But, am I correct in understanding they can withdraw entire reviews, or exclude certain pieces of research from a review, on various grounds which relate to patient safety and they are required to write a protocol, and protocols are very specifically detailed in the DoH?

 

and I'm sure I read somewhere that they adhered to COPE Publication ethics: An introduction to COPE

Retracting an article when an institutional review concludes no misconduct | COPE: Committee on Publication Ethics

 

Presumably the participants in the studies that are being reviewed, must have in some way consented to their data being used in such subsequent analysis. Does this mean that the original subjects could withdraw that consent? For example if many of the PACE patients withdrew there consent for their data being analysed would this entire edifice collapse?

 

From the Editor's note published 2 October 2019

In Hilda's latest blog she mentions over 100 criticisms received.