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

[MEMarge]

Later on in the Q and A from Toby

"If I can come back to the earlier questions about editorial notes, I have been asking one of the team about that. I've been assured that, it is a known issue, the editorial note coming to the PLSs including in translating them, which is quite an important feature of the.org. The hosting the Plain Language Summaries and looking to get a solution for that after a meeting in May."

Toby Lasserson - Deputy Editor in Chief
Toby works closely with the Editor in Chief to deliver the objectives and targets of the Cochrane’s Editorial and Methods Department. Toby supports the Editor in Chief by leading our global review production operations and helps to implement our goal of offering high-quality, relevant, up-to-date systematic reviews and other synthesized research evidence that informs health decision-making around the world. Toby also supports the strategic and editorial development of the Cochrane Library according to user needs, and ensures the Library remains a premier international source of healthcare evidence. Toby works closely with and supports the Cochrane Review Groups Networks.

So, this may be the quickest answer Caroline has had to one of her questions!

It can also be followed up in June, if nothing happens.

 

[Barry]

For the record, on Twitter, Hilda has committed to publishing of the progress report before the new NICE guidelines is published in August.

Question, "Will this be released before the NICE Guidelines are published in August?"

Answer, "If you mean the progress report, yes."

I do find a rather tragic irony in how lacking in progress a progress report can manage to be.

 

[Caroline Struthers]

@Caroline Struthers question was asked
"Plain Language Summaries can be accessed directly via the organisational website, Cochrane.org, if an editorial is posted on the main text to say a review is out of date or not used for decision-making, it is not visible in the PLS, users don't see it until clicking through to the full text, which defeats the object of the PLS, can you comment on addressing this issue?
ELIZABETH: I shall take this, it is, I'm afraid, it is somebody else's job, we don't publish the PLSs or put them on to Cochrane.org. I'm not sure how we would do it. But it is something to take on board to take on the inquiry to take it to the right person and some sort of action should be taken. I'm afraid that I can't say who it is or what will be the action at the moment.
JO: That is a very good point and this will inform our future work."

Classic Cochrane.

 

[Caroline Struthers]

Later on in the Q and A from Toby

"If I can come back to the earlier questions about editorial notes, I have been asking one of the team about that. I've been assured that, it is a known issue, the editorial note coming to the PLSs including in translating them, which is quite an important feature of the.org. The hosting the Plain Language Summaries and looking to get a solution for that after a meeting in May."

Toby Lasserson - Deputy Editor in Chief
Toby works closely with the Editor in Chief to deliver the objectives and targets of the Cochrane’s Editorial and Methods Department. Toby supports the Editor in Chief by leading our global review production operations and helps to implement our goal of offering high-quality, relevant, up-to-date systematic reviews and other synthesized research evidence that informs health decision-making around the world. Toby also supports the strategic and editorial development of the Cochrane Library according to user needs, and ensures the Library remains a premier international source of healthcare evidence. Toby works closely with and supports the Cochrane Review Groups Networks.

So, this may be the quickest answer Caroline has had to one of her questions!

It can also be followed up in June, if nothing happens.

Oh - just seen this! I know Toby quite well, and he will have known this question came from me - no doubt about it. I think this a very serious point of ethics which Cochrane did not think through when continuing to reject the requests to withdraw both CFS reviews. So yes, can follow up in June.

 

[dave30th]

Not having the notice visible or somewhere else reminds me of when I rented a house for the weekend with friends. We used the napkins from the drawer but didn't notice until the last day the notice UNDER all the napkins saying, "Please don't use these napkins."

 

[Sly Saint]

ELIZABETH: I shall take this, it is, I'm afraid, it is somebody else's job, we don't publish the PLSs or put them on to Cochrane.org. I'm not sure how we would do it.

doing a BMJ?

 

[Hilda Bastian]

Thanks, @Caroline Struthers. So the promised involving of patient groups and keeping people updated has been a complete failure.

I agree the delay in updating has been terrible - but that won't continue. I'll make it clear why things did not go as originally planned, in the first progress report. Sorry to be so vague at the moment - but I'll be happy to discuss in detail once that's out.

 

[Hilda Bastian]

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.

This isn't what's happening and there is no connection with the NICE guidelines.

 

[Hilda Bastian]

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.

COVID did have a huge impact, but although that was for a long time, it's not ongoing.

 

[Hilda Bastian]

It’s standard establishment tactics keep stonewalling with non responses for years in the hope people will give up, run out of money or motivation to pursue their complaint.

Another standard establishment tactic is to kick something off into the long grass of a review, at the beginning this makes people think progress is being made. But it depends very much on what the review consists of.........

I'm definitely hoping you won't give up. My uninformative responses are because I don't want to pre-empt the report, and I'll be more responsive afterwards, and as this moves forward.

 

[Hilda Bastian]

Sorry for not being up to speed on this, but are the IAG waiting for NICE? Because that seems to be the wrong way round.
If I'd known that were the case, I would have submitted my comment to NICE and not Cochrane. But I guess it's too late now.

I'm very grateful for your comment, and I hope you will consider it was worthwhile as this develops.

 

[Hilda Bastian]

“At the appropriate juncture, in due course, in the fullness of time” as Sir Humphrey might say.

As far as I’m aware we’ve not had any news of progress since Hilda was appointed IAG lead over a year ago. Last April we were told there would be a progress report “soon”. In February we were told “A progress report is a high priority, and plan to have it out well before the end of this month.”

@Hilda Bastian Can you tell us whether any members of the IAG have been appointed yet?

Apologies again that I'm not going to pre-empt the report: and say the lack of a progress report does not mean there hasn't been any progress.

 

[Hilda Bastian]

Time is of the essence. I thought she meant weeks, not years!

I did mean weeks - and although the slowdown was long, it won't continue that way.

 

[Hilda Bastian]

I have.

No.

@Hilda Bastian
I understand that there are situations where priorities shift.

Not even letting us know in a formal manner, inform us on the webpage etc is what really annoys me, though.

If you want to take people with ME seriously, then you have to do something that takes us seriously.

At the very least, why can't you just put a simple notice on the webpage and let subscribers know?

I don't understand why you need to finish a report to let people know that there will be a substantial delay.

Also, I don't understand why you need a report to let us know if people have been appointed to the IAG.[*]

Ideally, you could consult patients how to proceed if you won't have sufficient time for your job for a while.


Edit: [*] Or if invitations have been sent -- see this post

Important point: yes, we should have done that.

 

[Hilda Bastian]

I signed up and have never heard anything at all. I have written several times to the IAG address with suggestions. I have received acknowledgement every time, and once, in the early days, a reply from Hilda to my questions - will dig that out.

Cochrane have rejected my request to withdraw the "current" reviews (Exercise and CBT) despite the fact they could cause harm to patients if the findings were followed. I sent details of that to Hilda.

I have submitted a complaint about Cochrane's refusal to withdraw the reviews, or to independently review this decision when I appealed against it, to the Committee for Publication Ethics (www.publicationethics.org). I did this a month ago, but have heard nothing back from them yet.

I had the impression you were reading my replies - should I re-send them if you've only seen one?

 

[Hilda Bastian]

This is the part that confuses me most. It says advocacy groups will be involved. S4ME asked to be involved. Yet we have received no information on how and when we should make our suggestions for IAG members. So where have these 'suggestions' come from? Random individuals? Twitter? Private invitation to selected advocacy groups? Public invitation?

The communication method with the IAG is the email address as publicized, and we received expressions of interest from individuals and groups. How the process evolved will be detailed in the report, and I'll be happy to discuss it further after that.

 

[Hilda Bastian]

It seems Hilda has become a Cochrane member again - added to the database in March 2020.

Am I still there? I thought I had been removed. (It turns out they had added a bunch of people who qualified for membership from past involvement that had apparently been overlooked and emailed us to let us know: while it's true I qualify for membership, I do not want to be one.)

 

[Hilda Bastian]

I did wonder if there are some politics going on around who gets appointed since they say clinicians and researchers. I could imagine someone in Cochrane pushing for people with a particular view.

That hasn't been an issue at all, I'm pleased to say.

 

[Hilda Bastian]

Maybe @Hilda Bastian will take the opportunity of this event about evidence and uncertainty to give headlines from the much awaited progress report on the plans for the independent advisory group to engage with stakeholders on exercise in ME/CFS.

No - not going to publicly pre-empt the report anywhere.

 

[Hilda Bastian]

Sigh


From inside it might look and feel very busy, from the outside it just looks like one web page published 14 months ago. Just a bit of communication would have avoided that disconnect. Sorry if that seems grumpy but soon has a very elastic timescale.

Agree. Grumpy is obviously justified. Working on resolving that disconnect.