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

I think the key one is NICE's responsibility to produce evidence based guidelines. Also, the political accountability where NICE fails to produce evidence based guidelines --- I know, trying to make Teflon coated Departments/Ministers responsible for ensuring that guidelines are evidence based ----.

As for Cochrane, difficult to see how you could judicially review Cochrane ---- you'd have the great and the good coming out about "evidence". However, as others here have pointed out, those who claim to be "experts" re "evidence evaluation" inevitably seem to be entirely unreliable --- even about the basics.

 

The reference to "unpublished data" sounds a bit worrying - reminiscent of PACE (withholding data). I'm sure NICE would state that that the process of producing guidelines is transparent; however, it's one of those things --- you need to know the dodges/how to analyse the evidence before you can be confident that the outcome is evidence based.

 

Sounds reasonable maybe the challenge should be to NICE i.e. now it's signed up to a co-operative agreement!

Possibly a Parliamentary Question and/or an email to the APPGs (ME/CFS & Covid).

 

Good grief - this is awful

 

Apparently things have been moving forward according to Hilda Bastian on Twitter:

It has been moving forward: lack of progress reports does not necessarily mean lack of review progress - these involve different groups of people.

 

Todd Davenport confirms to Bastian's tweet. But yes, would be nice with a proper update.

 

There is something very bizarre about the secrecy surrounding this process.
Normally confidentiality around a policy review would be to protect people who had taken on some sort of official duty to produce an independent report.

Cochrane might have seemed vaguely official in the past but it isn't. It is a group of self-appointed 'experts' who produce stuff with no official remit. I can see no reason why this process should be confidential, at any stage. The process is phoney. Recent outbursts from people like Flottorp and Garner, together with contributions by Glasziou make it clear that in the area of non-pharmacological treatments Cochrane hasn't a clue how to assess evidence quality. Its members are also indulging in misinformation and marketing of baseless treatments.

My only reason for thinking this exercise was worthwhile was that confronting some of the Cochrane people with the idiocy of the first review might lead to a slightly more enlightened approach. It is long past time that might have happened. It cannot take this long to not yet reach a decision that the evidence is worthless.

 

Another question is why Cochrane can’t accept the evidence reviews of the new guideline from NICE?

Why repeat the effort?

 

My initial reaction was that the responses to the consultation would be pretty damming (polite phrase) - even allowing for some delusion, and/or defences based on self interest, i.e. those responding on behalf of Cochrane, the whole idea of a consultation seems like a car crash with Cochrane the casualty.

I'm beginning to generate a bit of respect, for Cochrane, as I type --- if you know the responses to the consultation will be problematic, then don't ask the (consultation) questions/run the consultation.

Forget the idea of open minds and being prepared to make changes ----.

 

I guess a lot of those who might be involved have had a major diversion of attention/resources* because of 30 months of pandemic. Certainly Hilda produced a lot of very valuable work on vaccine efficacy. Even people we are not well disposed towards may have experienced very profound impacts on both professional and personal lives, and frustrating as it is, it would be a bit ironic if as group of people whose lives have been shaped by illness, we didn't recognise the impacts of a pandemic on others.

*yes I know - a lot of that diversion of resources has been writing dodgy papers psychologising COVID

 

I see no need to make excuses for these people.
As eloquently explained by Peter Barry, the evidence now shows there is too little effect to be useful - we have a positive negative if you like, not just a don't know.
The Knoop paper showing that questionnaires do not reflect actual activity levels add to that a confirmation of the absurdity of the outcome measures used. But all the problems with these measures are problems of likely overoptimistic results. Since the results even so are not enough to bother with the whole thing is dead and buried.

It didn't take more than a couple of minutes to type that. A committee does not need more than half an hour to check the relevant data.

The whole thing is a Lilliputian Morris Dance to nowhere.

 

You are right of course. But - committees ! They have a life of their own, and are almost impossible to kill, they just go on and on unless someone decides to actively put them down. In the case of this advisory group, until its collective membership has decided it has done enough advising, or until someone gives it an absolute end date, it'll just continue to exist without acknowledging that it has no real purpose.

 

Exactly!! There is absolutely no reason for it at all. Cochrane have even signed a collaboration agreement with NICE to share data and analyses with each other to avoid the research waste this tortuous and weirdly secretive process of writing a new review with involvement of patients exemplifies. NICE involved patients in the process. Arguably more meaningfully than Cochrane is doing. And everything is publicly accessible, unlike this drip feed of reports which has stalled due to COVID and Hilda's understandable lack of availability. I have said that repeating the work NICE has done is pointless over and over to Cochrane directly and via Hilda. I have also said that it is unethical to keep the Exercise review on the Cochrane Library because the findings contradict NICE's evidence review. But it seems to make Cochrane dig its heels in even more. Trying not to take it personally ;-)

[edited at 22:39 to expand and hopefully clarify my points]