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

From https://www.cochrane.org/about-us, all bolding mine.

"Cochrane is for anyone interested in using high-quality information to make health decisions. Whether you are a doctor or nurse, patient or carer, researcher or funder, Cochrane evidence provides a powerful tool to enhance your healthcare knowledge and decision making.

Cochrane’s members and supporters come from more than 130 countries, worldwide. Our volunteers and contributors are researchers, health professionals, patients, carers, and people passionate about improving health outcomes for everyone, everywhere. Our global independent network gathers and summarizes the best evidence from research to help you make informed choices about treatment and we have been doing this for 25 years.

We do not accept commercial or conflicted funding. This is vital for us to generate authoritative and reliable information, working freely, unconstrained by commercial and financial interests.

Our Strategy to 2020 aims to put Cochrane evidence at the heart of health decision-making all over the world."
 
Trish said:
Thanks, @Caroline Struthers. So the promised involving of patient groups and keeping people updated has been a complete failure.
Click to expand...
I think Covid stuff will take precedence now...and for quite some time. maybe forever. It would be fine with me if they just withdrew from this area altogether, withdrew the remaining two reviews, and left NICE to it. I don't understand what's in it for them (or more importantly, patients) to pursue it. It's so frustrating.
 
Caroline Struthers said:
I think Covid stuff will take precedence now...and for quite some time. maybe forever. It would be fine with me if they just withdrew from this area altogether, withdrew the remaining two reviews, and left NICE to it. I don't understand what's in it for them (or more importantly, patients) to pursue it. It's so frustrating.
Click to expand...

I think the problem isn't necessarily those reviews in themselves but what withdrawing those reviews might mean for the ever burgeoning rehabilitation industry and ever expanding mental -health -lite services.

With the reviews standing people can carry on blithely making the statement "proven efficacy in treating ME/CFS..." with the implication that means it's at least worth a go in whatever poor patient group next in line to be rinsed.

Of course neither side of the equation is true but people issuing such a statement can hide behind Cochrane skirts, while Cochrane pretend it's all so very complicated.

It really isn't.

Cochrane are wilfully allowing the harming of patients and putting cronyism & the interests of a handful of influential people above the lives and health of millions worldwide. What's more they know it. They've been told publicly & there's no more deniability.
 
Sly Saint said:
don't think it can be; Wakefield surely didn't agree to having his paper retracted(?)
Unless maybe proof of fraud comes into play(?)
And then there's Eysenck; but he's no longer alive so maybe post-mortem it's allowed.
Click to expand...
Yes, I think with Wakefield it was out of his hands after it went legal.

Cochrane also have the sneaky "withdrawal" instead of retraction. Withdrawal means the authors can publish the same work in another journal (if the journal accepts it). This is actually what David Tovey said to the authors of the Exercise review to attempt to mollify them.

So in essence saying that we've reluctantly decided it's not "right" for Cochrane, but obviously we are not saying you didn't do an absolutely great job, so do go ahead and publish it somewhere else.

That makes it even worse somehow.

[Edited for clarity]
 
Last edited:
Caroline Struthers said:
The advisory group idea is a "pilot" for involving patients and the public in "high profile" reviews. https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot.
Click to expand...

The lack of progress should really be worrying Cochrane. They say that this is a pilot to involve patients and then fail to do anything for more than a year. This only seems to say that they are not serious about patient engagement. If the person they chose to do the pilot can't find the time then it is up to the organization to find resources to help or someone else to do the work. At best it shows them as incapable of organizing to their stated prioritize but I suspect it really reflects that they don't care about patient engagement or quality.
 
Adrian said:
The lack of progress should really be worrying Cochrane. They say that this is a pilot to involve patients and then fail to do anything for more than a year. This only seems to say that they are not serious about patient engagement. If the person they chose to do the pilot can't find the time then it is up to the organization to find resources to help or someone else to do the work. At best it shows them as incapable of organizing to their stated prioritize but I suspect it really reflects that they don't care about patient engagement or quality.
Click to expand...
Indeed.
Going to online for meetings/ info sharing may also have saved time and promoted accessibility and inclusion . ........

If you want things to happen then it's actually been easier to make them happen.
 
Adrian said:
The lack of progress should really be worrying Cochrane. They say that this is a pilot to involve patients and then fail to do anything for more than a year. This only seems to say that they are not serious about patient engagement. If the person they chose to do the pilot can't find the time then it is up to the organization to find resources to help or someone else to do the work. At best it shows them as incapable of organizing to their stated prioritize but I suspect it really reflects that they don't care about patient engagement or quality.
Click to expand...
None of which would be a significant problem if they had retracted as they should have based on their own rules and process. The lack of a review is not the problem, a misleading review giving harmful advice is the problem. Well, two reviews given the equally problematic CBT one.

Although yeah on the patient engagement front it's not living up to the promise, but frankly I expected nothing out of Cochrane on this, the decision to keep the reviews published shows patients are not part of the organization's priorities. Especially the timing with LC, shows significant problem being up-to-date with what's happening out there in real life, out of the safety of the thought bubble.
 
I suspect the delay (at least in recent months) is mainly due to Cochrane understanding very well the fundamental scientific and ethical problems with their review, and that it has to be withdrawn and completely redone, but the review authors are flatly refusing to cooperate and are instead applying every lever of power and influence they can to prevent it happening.

So Cochrane are just waiting for the final NICE guidelines, and hoping like crazy it gives them enough support & cover to finally do what they must do.
 
Barry said:
They don't realise - or maybe just don't care - how transparent their BS feeble excuses are.
Click to expand...

Actually, when Dr Godlee me wrote me that, I found it shocking. It was so transparently nonsense that of course she knew that I knew it was nonsense. It's not possible that BMJ can't easily move a link to an editor's note from an obscure outpost to the main study page. But I was confused. Was I supposed to be polite and accept that? I wasn't sure what she could have expected. I pointed out that contrary to what she'd indicated, I didn't understand how that was possible.
 
dave30th said:
Actually, when Dr Godlee me wrote me that, I found it shocking. It was so transparently nonsense that of course she knew that I knew it was nonsense. It's not possible that BMJ can't easily move a link to an editor's note from an obscure outpost to the main study page. But I was confused. Was I supposed to be polite and accept that? I wasn't sure what she could have expected. I pointed out that contrary to what she'd indicated, I didn't understand how that was possible.
Click to expand...
I think your response was good. In effect giving her much the same - letting her recognise that you and most other people fully understand what a blatantly BS apology-for-an-excuse she was fobbing people off with.

I do sometimes wonder if a standard part of their workflow for replying to you and other detractors these days is to first talk with their lawyers, with thoughts of possible legal action against them in the future. These responses that seem so crass and alien-logic to us, might actually be more sensible viewed from a defence lawyer's perspective. Basically admitting nothing, albeit sounding moronic. I wonder if Steven Lubet might have any thoughts on this. If this is the case, and we understood it better, then it might better guide our interactions.

ETA: This might also align with their extreme reluctance to do any of the things they might be reasonably expected to do, to avoid any tacit admissions of guilt on their part?
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom