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

Medfeb said:
In response, my Cochrane contact recommended the community email the IAG directly at Cochrane.IAG@gmail.com.
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Well, if they want a community email, maybe we should give them one. Maybe we ask @dave30th to write a short letter, noting the harm that the ongoing existence of the old review is causing, and we get individuals and ME/CFS organisations to sign it?

I don't know, @Medfeb, what do you suggest we do that might have any hope of achieving some useful progress? Surely 'the community' deserves to be told on whose desk the draft protocol is sitting? You and I both have sons affected by ME/CFS; I know you feel as determined as I am to make things better for young people with this damn disease before they are better described as old people.

Could some of the patient representatives on the IAG tell us what is going on, or do they not have any idea? I mean, if one or two of them stuck their head above the parapet and actually communicated with 'the community', what's the worst that could happen?
 
Jonathan Edwards said:
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.
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I like to think that if I hadn’t been so unwell for so long I would be sufficiently well-read to understand more of your cultural references without having to Google them. But I enjoy the education.

Meanwhile, I’m trying to imagine the reaction if any other group of patients had been treated this way. But I can’t imagine that ever happening. This is just seems to be further evidence of the contempt in which we are held. A bit like [please insert cultural references here].
 
Hutan said:
Well, if they want a community email, maybe we should give them one. Maybe we ask @dave30th to write a short letter, noting the harm that the ongoing existence of the old review is causing, and we get individuals and ME/CFS organisations to sign it?
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I think this would be a good idea. Or perhaps an open letter drafted by S4ME member that anyone could sign on one of the petition platforms.

Hutan said:
You and I both have sons affected by ME/CFS; I know you feel as determined as I am to make things better for young people with this damn disease before they are better described as old people.
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I was a teenager when I became unwell. I will be 50 this year. My parents are my only carers. I don’t know what I will do when they can no longer look after me.

Hutan said:
Could some of the patient representatives on the IAG tell us what is going on, or do they not have any idea? I mean, if one or two of them stuck their head above the parapet and actually communicated with 'the community', what's the worst that could happen?
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I emailed one of the patient representatives who I’ve had correspondence with before on other issues. They have always replied promptly but no reply this time. And I’ve had no reply from Hilda to my email either. It’s all very 1984.
 
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Caroline Struthers said:
Just wrote to Hilda

Dear Hilda

I have been questioning the decision for Cochrane to produce an update of the Exercise review including a new protocol since the plan was announced. One of my arguments was that at the time Cochrane announced the plan for the update, NICE were already undertaking a review of all treatments for ME/CFS to find evidence to inform their new guideline (now published), so it would be a wasteful duplication of effort.

Today I read an article in the BMJ about gender treatments for young people (https://www.bmj.com/content/380/bmj.p382) and noticed a paragraph about Cochrane’s decision not to produce a review because NICE had already done it. See quote below

“Cochrane, an international organisation that has built its reputation on delivering independent evidence reviews, has yet to publish a systematic review of gender treatments in minors. But The BMJ has learnt that in 2020 Cochrane accepted a proposal to review puberty blockers and that it worked with a team of researchers through 2021 in developing a protocol, but it ultimately rejected it after peer review. A spokesperson for Cochrane told The BMJ that its editors have to consider whether a review “would add value to the existing evidence base,” highlighting the work of the UK’s National Institute for Health and Care Excellence, which looked at puberty blockers and hormones for adolescents in 2021. “That review found the evidence to be inconclusive, and there have been no significant primary studies published since.”

I hope Cochrane will come to the same sensible conclusion about the Exercise review, and announce that soon. The existing Cochrane review is now well over two years out of date, and contradicts NICE’s review findings. This has caused confusion, and led to prominent people associated with Cochrane to accuse NICE of “a disastrous misapplication of GRADE” (https://www.bmj.com/content/371/bmj.m4774/rr-7). I hope Cochrane will reconsider its decision not to withdraw it.

With best wishes

Caroline
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I have had no reply to this sent to the IAG address on 24 Feb. I could now forward it to the CEO?
 
The cochrane.iag@gmail.com auto reply has this text at the bottom [my italics and bold]

Thank you for your interest.

This email address communicates directly with Cochrane's independent advisory group (IAG) on the ME/CFS and exercise review. When this IAG finishes its work, the contents of this email account will be archived at Cochrane.

I have asked explicitly whether the correspondence archive will be made public, as I understood it would be, and have had no answer
 
Caroline Struthers said:
I have had no reply to this sent to the IAG address on 24 Feb. I could now forward it to the CEO?
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Have just written to Catherine Spencer

Dear Catherine (cc Cochrane.iag@gmail.com, exerciseforme-cfsupdates@cochrane.org)

I am writing in a personal capacity and not as a representative of my employer.

I wish to complain about the poor management of Cochrane’s “Stakeholder engagement in high-profile reviews pilot” (https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot)

Despite Karla Soares-Weiser’s assurances before the process began (https://www.cochrane.org/news/cfs), there has been slow progress, lack of clarity, and no update AT ALL since 2021. This is unacceptable. As far as I can tell, all attempts to find out what’s going on have been unanswered or received a stalling response. My latest email to the Independent Advisory Group was 24 February (see below) and has also remained unanswered. I wrote in 2022 and received no response (see attached). I have also emailed the Cochrane Editorial address which is supposes to keep us updated on progress, and received no response (see attached).

As you know, I am planning to send another complaint about Karla Soares-Weiser which is related to this review, but not connected with this complaint. I will do this in the next few days.

Best wishes

Caroline
 
Hutan said:
Well, if they want a community email, maybe we should give them one. Maybe we ask @dave30th to write a short letter, noting the harm that the ongoing existence of the old review is causing, and we get individuals and ME/CFS organisations to sign it?

I don't know, @Medfeb, what do you suggest we do that might have any hope of achieving some useful progress? Surely 'the community' deserves to be told on whose desk the draft protocol is sitting? You and I both have sons affected by ME/CFS; I know you feel as determined as I am to make things better for young people with this damn disease before they are better described as old people.

Could some of the patient representatives on the IAG tell us what is going on, or do they not have any idea? I mean, if one or two of them stuck their head above the parapet and actually communicated with 'the community', what's the worst that could happen?
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The most impactful thing would probably to loop in the long hauler advocates who understand the whole well enough to see how it affects them.

Like the Patient-led group that sprung from the Body politic forum. We can scream in the echo chamber all we want, we have to break the walls and get more eyes and ears involved.

This review has been cited many times favorably to recommend exercise, or whatever, for LC. It is impacting them. I think there would be a favorable response from many. Even those who want a separation can't miss that whatever they want is irrelevant, this applies to them regardless.
 
Andy said:
What the heck, I had time to waste so I've sent an email to both accounts requesting an update.
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I have just received this reply from the email that I sent to pressoffice@cochrane.org

"Dear Andy,

Thank you for getting in touch. The update is currently underway and we are hoping to publish the protocol for consultation in the coming months. Unfortunately I am not in a position to be more specific at this stage but would be happy to update you once the protocol is published.

Best,

Harry


Harry Dayantis
Head of Communications

Cochrane Central Executive Team"


To date I have received no response, apart from the "thank you for your message, we will get back to you" automatic message, from Cochrane.IAG@gmail.com.
 
Andy said:
”The update is currently underway and we are hoping to publish the protocol for consultation in the coming months.”
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Well that’s very reassuring – the update on Penelope’s weaving is “underway”!

I can’t remember, in politico-speak is “in the coming months” sooner or later than “in due course”?

This is becoming more and more like a satire written by Armando Iannucci.
 
strategist said:
If you drag it out long enough, you can say that it's time to cancel the project because it has gone on long enough without progress. ;)
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As long as Cochrane formally withdraw the old ME/CFS exercise review, I would see them cancelling the project as a positive outcome given we now have the NICE guidelines, which should have rendered the entire exercise redundant.
 
Peter Trewhitt said:
As long as Cochrane formally withdraw the old ME/CFS exercise review
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How are we going to make that happen...?! The Norwegians were asked at least twice by David Tovey to back down and agree to it, and they said "no". And that, apparently, is that. Someone once said to me that the review will not be withdrawn until The Lancet retracts PACE.
 
Maybe I don't understand what protocol means here, but my understanding would be simply the basic plan for what the review would be.

So that would be the blueprint to the building. After the blueprint is the whole construction, aka most of the work. We still don't even have a blueprint. The blueprint is a small part of the entire project. And after 3 years there's still not even a plan for when the plan would be completed.

Or does protocol mean something else here? Because if I compare to project management, this is the first phase and it's the shortest phase of the whole.

Anyway this is completely insulting dereliction of... you know what there isn't even duty here because this is a private influencers' club and they do whatever the hell they want.
 
rvallee said:
Maybe I don't understand what protocol means here, but my understanding would be simply the basic plan for what the review would be.

So that would be the blueprint to the building. After the blueprint is the whole construction, aka most of the work. We still don't even have a blueprint. The blueprint is a small part of the entire project. And after 3 years there's still not even a plan for when the plan would be completed.

Or does protocol mean something else here? Because if I compare to project management, this is the first phase and it's the shortest phase of the whole.

Anyway this is completely insulting dereliction of... you know what there isn't even duty here because this is a private influencers' club and they do whatever the hell they want.
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Protocol is a basic plan, often written in a publishable format (it's an easy way for academics to get an extra publication out of their research without doing any extra work). Cochrane publish protocols for all their reviews as standard, and the one for the current Exercise review is this https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200/full. It was written in 2001.
 
Caroline Struthers said:
How are we going to make that happen...?! The Norwegians were asked at least twice by David Tovey to back down and agree to it, and they said "no". And that, apparently, is that. Someone once said to me that the review will not be withdrawn until The Lancet retracts PACE.
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Just mentioning this here as a potential future backstop. As a Registered Charity, Cochrane is subject to England & Wales charity law, and from that is subject to a number of limitations of how it can act - including how it can act in its impact on the public (generally) and in certain circumstances specifically e.g impacts on minorities. Perhaps of relevance here is: Part 4: Detriment or harm

How detriment or harm might affect the public benefit requirement

Legal requirement: a purpose cannot be a charitable purpose where any detriment or harm resulting from it outweighs the benefit.

Evidence of detriment or harm

The commission take detriment or harm into account where it is reasonable to expect that it will result from the individual organisation’s purpose. This will be based on evidence, not on personal views.

Where the benefit of a purpose is obvious and commonly recognised, there is an even greater need for evidence of detriment or harm to be clear and substantial, if it is to outweigh that benefit.

---------------------------------

If the published review, even with the note of concern, can be shown to be detrimental to ME/CFS patients, then there may be a basis for complaint to the Charity Commission and/or legal action. Perhaps it might be enough to remind Cochrane that it has a duty to avoid harming members of the public.
 
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