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

Precisely

There are zero contexts (outside of criminality) where legal obligations are not absolutely supreme. The remit of this review makes the requirements you outlined necessary for the creation of lawfully implementable conclusions.

The mirror image would imply that medics define law. They do not, however much we often insist on submitting to that falsity.

 

Given the specifically habitual and normalised nature of unlawful clinical behaviour and administrative decision-making it is fundamental that this factor be made explicit

Malpractice is a norm in this field

 

Do you know if the option was considered by the 2 systematic reviewers who did the work? I don't need to know the reasons why the option wasn't taken forward but I would like to know if it was considered or not.

 

Can you explain this? It seems quite dismissive.
What do you mean by perspectives, we are all focused on science here, are you implying it's OK for someone to have a non scientific opinion because, hey that's just another perspective?
What concept are you referring to that you think you understand people are opposed to? Can you back that up please.? Who are you referring to specifically and what evidence supports your claim?
Thanks.

 

People working together and talking to each other is a social process, and they're a little community when they work together for a long time - that's the "society" I was referring to.

 

A perspective that is only relevant to unlawful clinical judgement or decision making is not a mere perspective.

It is contributory to that unlawful behaviour, which can also be unindemnified and/or criminal (context dependent).

The loose analogy, and the fact, in extremis, is that such a "perspective" would actually make someone an accessory.

 

So what on earth has that to do with remarks about objectivity and cultural differences and all that stuff?

I don't buy that as a response at all I am afraid. I would echo @InfiniteRubix 's echo of what I said. This is really serious legal stuff.

I actually think that in the context of the Cochrane background you have picked what might be close to an optimal mix of people and may well be an inspired choice. I don't want to derail that, but talk of nothing objective, sociological and cultural factors and that dreadful word 'embedded' (which as an editor for a multidisciplinary journal always gives me the jeeps) seems to me way outside what is legitimate.

Would anyone at Cochrane endorse these comments?
I am happy if you don't answer. I shall take this as an aberration.

 

I will be rudely facetious to make a point. Organised crime is also a social process.

People merely holding a view does not mean there is any lawful merit, just because they have a view.

Merely having a perspective does not negate it's unlawfulness either and/or its contribution to law breaking.

Unlawful conduct stemming from a perspective is not santised legally by either normalised malpractice or habitual low standards.

Excess and unmerited respect contributes to the liability profile.

 

My view is that subjective measures of health in an unblinded situation can easily be demonstrated to be misleading. In ME/CFS research we see over and over again how positive effects in such studies are treated as evidence that the treatment is effective. There may be an acknowledgement somewhere that the results aren't entirely reliable but the de facto they are still treated as if we could be sure that that the positive effect contains at least some treatment effects. The possibility that there is no treatment effect at all is virtually never considered and it is one of those facts that are too inconvenient and difficult to acknowledge for many.

One of the negative effects this has on ME/CFS research is that incompetent researchers continue to receive funding which slows down progress and has probably already delayed the day that diagnostic tests and genuinely effective treatments are available (maybe by decades). This would all stop if organizations like Cochrane stopped giving credibility to studies with such demonstratably misleading methods. Cochrane is very much part of the problem.

I'm sure there are people who have different perspectives on this but I don't believe that they could demonstrate that they can somehow estimate the true treatment effect from such trials (such claims to me look like complete pseudoscience to be honest).

PS: and the reason assumptions about treatment effects are a bigger problem in the context of ME/CFS is because the illness objectively doesn't respond as one would expect to exercise. In this context it's plausible that the true composition of an effect seen in subjective outcomes is not a positive treatment effect plus positive nonspecific effects but a negative treatment effect that is hidden by positive nonspecific effects.

 

It is also worth adding that membership of an advisory group is not a place for people to acquire the minimal educational standards that may be lacking amongst some "perspectives."

Sufficient literacy should have been prerequisite. Merely holding a view despite scientific standards is not a sign of adequate literacy and implies prejudicial determination of group membership.

This further informs the legal context acutely when judging the process and outcomes.

 

Sorry for slow reply. I was posting in haste and meant Neglected Illness as in Natalie Boulton's dialogues for a neglected illness: https://www.dialogues-mecfs.co.uk/videos/

The talk that Nina gave was a few months ago for a Canadian ME group/organisation, maybe BC. I haven't been able to find the link in a brief search today. Maybe @rvallee or someone else can remember more.

Thanks @Sly Saint for responding sooner, you are always great at locating articles etc.

 

Your question included considering whether particular named individuals would be "part of" the team.

None of the authors participated in any of the meetings to discuss who the authors would be. I have no idea what the 2 systematic reviewers who are doing the work have thought about. They work for Cochrane Response, and agreed to participate when asked.

Edit: missed a word.

 

Something may be politically necessary to accommodate others' unlawful behaviour or their willingness to maintain legally unsustainable standards. But avoiding the enforcement of reality does not remove implications of unlawfulness due to that mere political or practical expediency. Accomodation or facilitation of unlawful acts are exactly that - an ugly and common coping mechanism in our world.

Expediency and our "battered wife syndrome" are two sides of the same coin - keeping legal realities in box, for fear of hurting the sensitivities of the illiterate and/or the morally dubious.

 

https://www.s4me.info/threads/news-from-canada.18994/#post-332638

 

I revised the question to ask whether the suggestion of inviting Vink and Vink-niese as authors who had previously published a convertible review had been discussed. If I never made the suggestion before, there's no reason why it would have been. I can't remember whether I submitted it to the IAG email address or via Twitter or at all, and wondered if there was a log of de-duplicated suggestions anywhere. I can look back over my own emails and Twitter if it's easier. I didn't realise that an author team outside Cochrane staff was being assembled as I think the March 2020 report only said that there would be an IAG advising a Cochrane response author team (I haven't looked back at what was said in March 2020). It's great there is a more diverse author team but no one knew anything about it until recently.

The review which inspired the ACTIVE project which I was happy to be involved in (https://training.cochrane.org/resource/involving-consumers-cochrane-reviews-learning-active-project) and subsequently this pilot for high-profile reviews is this one https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001920.pub3/

There was no IAG, but a panel of stakeholders (not authors) who together made key decisions during the review process. It's an inspiring story and I think a model which should and could be adopted for all reviews, not only high profile ones. It is practical, sustainable and the review author team received funding for it specifically because of their commitment to the meaningful involvement of as many patients/carers and other stakeholders as possible.

This is a report about how they did things. https://training.cochrane.org/sites...volvement in a Cochrane systematic review.pdf

I think I suggested Alex Pollock (lead of the review and the ACTIVE project) as a good person to be involved in this pilot too. I will look back over the correspondence and Twitter.

 

Hilda has partly answered this herself. I think a proportion of the workforce involved would have been non-negotiable in practice. The real task here is to confront Cochrane on its own 'cognitive dissonance'. I think the way to do that is to mix all the disparate viewpoints, including one or two people who really understand the problem, so that everyone at least knows where everyone else is coming from.

I am not saying that I think that a sensible conclusion will be reached but what actually gets written in this review is probably of less importance than trying to get into the public domain how much of a mess things are in, with the possibility of getting people to face up to how muddled their thinking is.

The objectivity thing is probably a red herring. Both NICE and Cochrane have scored the evidence low or very low I think. The problem is that some people feel unable to not give a recommendation for non-pharmacological treatments like this even if the basis is as poor as it gets. Glasziou has said words to the effect that 'oh, but we know it works from clinical experience'. Yet as I pointed out to NICE you can see from PACE that nobody could know that. And what is the point in a systematic review if trumped by anecdote? The cultural influence here is in not being able to resist recommending a treatment you have faith in, in the face of clear lack of usable evidence.

 

Thanks for the links about the ACTIVE project.

Here's the text from March 2020 - the page is archived here:

The review’s revision and update will be conducted by systematic reviewers from Cochrane Response (Cochrane’s evidence consultancy unit), and additional new co-authors are being considered.

(Edit: removed italics)