Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Is this article relevant @Caroline Struthers?

"Is my study useless? Why researchers need methodological review boards"

https://www.nature.com/articles/d41...ail&utm_term=0_c9dfd39373-33d9dd6146-44155257

 

Yes!! I noticed this and plan to contact the author

 

My proposal is to systematically produce template trial protocols for the use of funders. The design and methods review would be done in advance of the research being funded. This would mean research groups would bid to conduct pre-designed and approved trial protocols, produced to fill evidence gaps and explicitly avoid mistakes of previous trials, and including meaningful input from patients. So it's not about finding flaws in unsolicited trial protocols, but more about ensuring trial protocols are sensible in the first place.

 

Just a reminder that ChatGPT is basically a child's toy compared to what's coming this year, which will also be a child's toy compared to the next generation, probably the next year, if not before. It's not about what ChatGPT can do, it's about how much more the next iteration can do compared to ChatGPT than what ChatGPT can do better than what came before. It's a race and it has so many competitors, all racing to be the first. It's going to be a multi-trillion industry and the efforts are happening accordingly.

Usually technological progress requires a downtime period, having to deal with manufacturing process yields, supply chains and logistics, then distribution and sales. Products have to go through a lengthy process of being actually built and delivered to people. And manufactured products need to sell before a better version gets commercialized, improvements staggered to maximize profits caused by the need to produce actual real-life items and getting them in the hands of paying customers.

Services like AI, where the delivery infrastructure is already fully built, can be deployed for use in days once they're ready, they can go through generational leaps in a span of months, the pace is seriously mind-blowing when you've been following it for a while. And the second a better version comes around, it can displace the big players, so the need to push is there and constant.

 

there should be a compulsory section on 'limitations of this research' which in published papers often only appears tucked away somewhere in the text or simply not mentioned at all.
Having it as a a key feature in the protocol might help to focus attention on how sound the methodology of the research proposal is.

 

If a public body is looking for someone to run/carry out a specified study then publish the protocol. E.g. PACE seemed to be intended to get objective evidence [Actimetry - FitBIT], if that was set out in the spec, and you didn't deliver, then no money.

If you're applying to a public body for funding [researcher is suggesting that this research should be funded] and the public body approves it, in principle, then it e.g. published the protocol and ask for comments.

But yes, most of the existing problems are systemically poor trial designs - lack of objective outcome criteria. Those could largely be dealt with by guidance.

 

Still enabling harm in 2023, Fatigue, post-exertional malaise and orthostatic intolerance: a map of Cochrane evidence relevant to rehabilitation... 2022 ARIENTI et al

 

Caroline just thinking that the APPG might be a useful way in i.e. to deliver/help to deliver this

E.g. could ask the APPG to ask NIHR (research umbrella body?) to adopt this policy --

 

I will be putting in an application for funding to explore the feasibility of this policy to the NIHR "Research for patient benefit" funding stream. They have launched a "highlight" series to help under-represented researchers, starting with nurses and midwives. But they will also be highlighting methodologists, and allied health professionals (https://www.nihr.ac.uk/documents/rf...-nurses-and-midwives-call-specification/32050). Technically, I am a methodologist as my main job with the UK EQUATOR Centre is focused on improving transparency and reporting of research. Not sure when the deadline will be, but hopefully sometime in the summer.

 

This is the latest correspondence with Cochrane after I wrote to say I was preparing a complaint on 3 January. Getting hold of the email address of the new CEO sped things up considerably.



So I now have to get on and submit the complaint itself. To remind everyone, it will be specifically about Karla allowing the authors of the exercise review to ignore Guyatt's instruction that they explicitly state that exercise has no meaningful positive effect on fatigue.

 

Well, here we are, 3 years to the day. Not even a shadow of an attempt of an effort, not even a whisper. I expected very little from this, given how the odds were stacked, and it still managed to massively underdeliver. Impressive, in a way. The whole process began almost 7 years ago, Cochrane has been aware all this time that their shoddy review is invalid and causing harm. Clearly they couldn't care less what happens to patients, how their product is used, how many suffer and die needlessly because of it.

Cochrane is gonna Cochrane. I can't believe for a second that there wasn't influence from the likes of Paul Garner, politics rule here. Cochrane has always been a private club for self-promotion. As the flag-bearer of the failed evidence-based medicine paradigm, the end of this rotten organization will mark a major shift towards progress in medicine. It didn't take hindsight to predict that an evidence paradigm built on opinion and biased agendas was ever going to work out, especially without a single bit of science to it. Some math, sure, on fake numbers. Not science. The only parts of medicine that work are founded on science. Nothing in evidence-based medicine meets scientific criteria, and it's terrible. A child can see through the flaws in this logic. But as with most things, until it happens to them, people don't understand the life experience of others. Even when it's their freaking job, it's not even close.

We still regularly see deaths in the community. Many in their early adulthood. Suicides, early deaths, despair. That we see, there's a lot more we never hear about. All enabled and promoted by Cochrane. Among others, sure, but you made this dystopian nightmare, helped impose it on us, coercively, making a mockery of informed consent. All predictable stuff, an entire discipline built on exemptions to the rule and zero accountability is basically choosing violence.

The disappointment is infinite, but I really did not expect much anyway. The fault still lies with Cochrane, their treachery and corruption is at the core of what they do. This is what everything about us, in secret, behind closed doors amounts to. No one ever thinks of the other half: first do no harm, or else what. Well it's not the other half, it's not even considered. It should, but it says everything that nothing ever happens, no matter how much monstrous harm is inflicted on millions. Medicine fails the waiter test too often, when they owe us nothing, they do nothing.

 

It reminds me of that extra bit of material attached to a jeans pocket below the stitching that carries on just as two flaps of material going nowhere that slides down next to your leg when you put the jeans on. That seems to be Cochrane now - a continuation that no longer does anything and is invisible.

 

Have been a bit preoccupied with day job lately, but will aim to submit the complaint about Editor in Chief on 18 February which is the third anniversary of this. https://healthycontrol.org/2019/02/18/response-to-cochrane/.