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

It occurs to me that a David Tuller (@dave30th) letter, with lots of signatures of professionals and ME organisations, addressed to Cochrane might be worth doing. It could ask for the existing review to be withdrawn immediately and for an explanation of why there has been none of the promised progress or updates on the current process. It should be addressed to the head of Cochrane with copies to relevant others.

Edit: I think it would be fair for such a letter to ask Cochrane to provide a detailed explanation of the delay, including copies of all internal and external communications received and sent by the review writing group and the PAG, and communications between the 2 groups. We were promised regular updates, I think it's reasonable to ask for those in the form of actual comminications, as a FOI would do, not just a bland summary or excuses.
 
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Peter Trewhitt said:
Hilda Bastian’s tweet does not necessarily indicate she is part of any blocking or delaying tactic. She says:

“I agree the lack of formal reports on progress is bad. I'm expecting that to be over soon & can then discuss it. Those suggestions - that it's because Cochrane doesn't care about people with ME/CFS or that it's because of my bereavement - aren't the only possible explanations.”

My interpretation is she is saying that currently her hands are tied in relation to something she is not at liberty to discuss. Though the failure of Cochrane to move this forward and/or formally withdraw the obsolete review is unacceptable and a potential source of harm to people with ME/CFS we do not currently have enough information to attribute this failing to any individuals.

However we can and should be holding Cochrane collectively responsible. Is a petition with such as change.org a useful way to try to shame the Cochrane hierarchy into action?
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I have been meaning to make a formal complaint for weeks now, and have corresponded with new CEO to clarify that I can complain directly to her (specifically about Karla Soares-Weiser's failure to withdraw the review in 2019). I have a lot on personally and with work at the moment, but will do it after 8 March which is a major work deadline
 
Sean said:
I don't think Hilda Bastian is the problem at Cochrane.
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She's not even a member of Cochrane as far as I know, unless she's joined again. I think that's why she's supposedly independent. She left because of Cochrane not yet publishing open access (despite using volunteers to write reviews). But she is friends (or at least friendly) with Karla Soares-Weiser, and Atle Fretheim (boss of Lillebeth Larun, lead author of exercise review). Paul Glasziou who advised on the exercise review was her PhD supervisor, and friend. She is not independent at all.
 
Caroline Struthers said:
No. Because they are a charity. Ironic isn't it?
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Interesting point

This is very much a sidenote I'm aware but whilst it strikes me - increasingly pertinent given the move over the last decade (I remember when the intention was announced so assume it is still the case) to have more charities 'delivering' certain things rather than public sector. Which means some public money in most cases, and certainly responsibility for the public.

I wonder whether an update is needed that words things more specifically on the basis of what you are delivering to whom and on what basis. What back when such laws were instituted would have meant that it was relevant and necessary for the institutions it is covering vs those it doesn't - ie 'reason for introduction of these FOIs' and is it in terms of 'patients/public money' rather than something else?

I don't know, but have just thought of the question re: private providers delivering more services and in particular mental health sector with private hospitals for nhs patients and I don't fully know what IAPT type things would fall into, and then of course there would be other services outsourced - like we have with some of the fatigue clinics. And of course to the extent we now have ICBs to bring together 'other organisations' in delivery of services along with NHS and councils vs previous CCGs and integration.
 
Trish said:
I hope someone is keeping records of all correspondence relevant to why there is a lack of progress and will have the courage to make it public.
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Looking forward to using the inevitable FOIA bot that helps automate all of this and produces nice summaries of key points and discussions, no matter how obscure or veiled. Everything digital and legally accessible will be discoverable.

Whatever is going on, we'll find out. Too late for many, because we're not in a justice delayed context, we're in a life-saving-efforts delayed, with lives at stake every minute of every day this goes on. As the clock ticks lives keep being ruined, families destroyed, lives ended. All for a damn influencers club that is somehow, somehow, considered reputable despite clearly not caring one bit about the patients.

Soon. As in likely sooner than an update from this process.

And then of course the also-inevitable AI that will automate the systematic review process and make all of this theater obsolete and exposes how biased and conflicted it has been.
 
From another thread:

MSEsperanza said:
Apologies not able to post more about that myself at the moment -- but I think having a look at David Nunan's twitter account on that topic could be worthwhile for another reason.

(starting ~ 2023-03-05)


Nunan is a member of the authors team doing the 'full update' (or how it's called) of the Cochrane review on exercise interventions in ME/CFS.

His view on the masks issue / Cochrane review worries me.

If anyone felt up to post the relevant tweets here I think that would be helpful.

If I understood correctly he defends the 'masks' review.

Edited to add:
I agree that it's necessary to consider compliance with interventions. I think you need to clearly address that as one variable though and it seems to me that the included studies didn't provide data on that variable.

So his rebuttal of the criticism on the Cochrane 'physical interventions' review seems to me to even add to the review authors' misrepresentation of the findings.
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Trish said:
Is Cochrane subject to Freedom of Information law anywhere? Can we ask for copies of all correspondence relating to the as yet non existent review? I'm not sure whether Cochrane would take any notice of a petition.
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Caroline Struthers said:
No. Because they are a charity. Ironic isn't it?
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But are people outside the charity involved? People on the new review team doing the work as part of their day job - in a public funded position…?

That’s how someone in Norway got the communication between Larun/Fretheim and the prior chief of cochrane.

As Cochrane Norway is situated at FHI, public funded and the people involved employed by FHI.
 
And I agree with others, don’t belive Bastian is the issue with delays.

I would be very surprised if those that have an interesse in keeping the review up would just stop trying to influence things behind the scene.

Pure speculation of course, it could be any number of things avising delay. But I would not be surprised.
 
Jonathan Edwards said:
I actually think that this thing has been handled so unethically that it is time somebody blew the whistle. There must be someone on the project who can tell the world just how much Cochrane have sunk into hypocrisy. There can be nothing to be achieved by adhering to gagging clauses.
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I've thought about the lack of whistleblowers in this and frankly the fact that there hasn't been a single one ever puts that possibility to rest.

Not one. Not a single one. Not even a minor protest or concern. I think it just goes with the nature of the discipline, that only true believers get involved in it, combined with non-transferable skills that make people sort of dependent on keeping the trolley going around its loop. If it hasn't happened by now, it never will.

Well, after the fact, for sure, there will be a few people who will say they privately didn't fully agree with it, or something. The fact that the overall discussion hasn't even budged from "the relationship between the mind and the body is soooo complex" says it all.

This whole thing is going to be invalidated in a single swoop, until then it will keep trolleying around unopposed. It's an industry, thousands of careers depend on it. This never ends well for the people exploited by such an industry.
 
rvallee said:
I think it just goes with the nature of the discipline, that only true believers get involved in it,
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Except that we know that some definitely not-true-believers were involved - some we know well and respect.

I can imagine that for a long time it would be difficult to whistleblow if only because of potential fall-out for PWME, but I get the feeling that now may be the time for people from within to formally declare this project dead.
 
I have asked but at this time, do not know when or how the draft protocol will be released for review.

I've told Cochrane there are lots of questions about this and also a general lack of communication about this review (@Trish reported above the last comms was June 2021.) In response, my Cochrane contact recommended the community email the IAG directly at Cochrane.IAG@gmail.com. Media enquiries can be sent to pressoffice@cochrane.org
 
So pesky patients should be deflected into, most likely, pointlessly emailing whoever controls the IAG account, while people they really care about should actually email Cochrane. I don't understand quite what is so difficult about giving an update statement, even if it is one that is admitting that no progress is being made.
 
With due respect, @Medfeb this seems a bit like asking the 'community' to make a formal enquiry into how Penelope is getting on with her shroud-weaving in Ithaca.

The community have made it abundantly clear that they think this is a cop out of gigantic proportions and I suspect no sane person would disagree.

Sometimes one has to stand up and be counted?
 
Thank you, @Medfeb. That seems to confirm that a draft protocol exists and is stuck somewhere.

That’s more than we've been told before.

At this rate we might expect a completed review some time about mid century if we're lucky. Or unlucky. Looks like I'll have to live to 100 to read it.
 
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