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

[Caroline Struthers]

Thank you @Medfeb. I really appreciate this update.

To remind us all of the timeline on this:
March 2020 - Cochrane was actively getting the author team together and said it anticipated the review would be completed in about 2 years from early 2020. That implies an expected completion date early 2022.

May 2021 new members of the IAG and review author team were announced.

June 2021 The author team is working on a first draft of the protocol for the review

No official updates since then.

So now in
October 2022 we are told unofficiallly that the draft protocol is nearly ready to be shared with the IAG. Presumaby that will lead to some revision before the public consultation.
I am speculating that this means the protocol won't be finalised until 2023.

And then the review itself will start. If the NICE review process is anything to go by, this could be a very length task, unless the review team have the good sense and permission from Cochrane to simply adopt the NICE detailed analysis of all the studies NICE included so they only have any studies NICE didn't include to analyse in detail.

Given the time it's taken just to get to a draft review, this looks like it could take years...

Edit to add. I don't blame the individuals on the review group. They are all busy professional people with other priorities too, and it can't be easy working at a distance rather than being able to get around a table and hammer things out.
This makes it all the more urgent that the current review be withdrawn immediately. If Cochrane is concerned that this leaves people with no review of exercise for ME/CFS, they can refer people to the NICE and CDC reviews and conclusions as useful alternatives.

Presumably the protocol will report the intention of using the new research integrity tool produced by Cochranites, including Paul Garner, to identify and exclude "problematic" trials. https://onlinelibrary.wiley.com/doi/10.1002/jrsm.1599

 

[Arnie Pye]

Presumably the protocol will report the intention of using the new research integrity tool produced by Cochranites, including Paul Garner, to identify and exclude "problematic" trials. https://onlinelibrary.wiley.com/doi/10.1002/jrsm.1599

Title of that paper : Identifying and managing problematic trials: A research integrity assessment tool for randomized controlled trials in evidence synthesis

So, they've given themselves an escape route to ignore everything that doesn't fit the BPS ideology or they just don't like for any convenient reason? How can they mention randomised controlled trials and not mention subjective outcomes and research done without controls or randomisation?

 

[Peter T]

This makes it all the more urgent that the current review be withdrawn immediately. If Cochrane is concerned that this leaves people with no review of exercise for ME/CFS, they can refer people to the NICE and CDC reviews and conclusions as useful alternatives.

I just wanted to strongly echo @Trish’s point that given Cochrane has acknowledged the exercise review is no longer valid and their delays in moving forward, they really ought to withdraw it and refer people to more recent sources, ie NICE and CDC.

 

[Caroline Struthers]

I just wanted to strongly echo @Trish’s point that given Cochrane has acknowledged the exercise review is no longer valid and their delays in moving forward, they really ought to withdraw it and refer people to more recent sources, ie NICE and CDC.

I will write to them again pointing this out. Cochrane seem less able to do a U-turn than the government, which is quite something!

 

[Hutan]

I just wanted to strongly echo @Trish’s point that given Cochrane has acknowledged the exercise review is no longer valid and their delays in moving forward, they really ought to withdraw it and refer people to more recent sources, ie NICE and CDC.

Yes, I want to re-echo that. That old review is causing harm, at a time when Covid-19 is producing lots more people with ME/CFS. Given reputable entities such as NICE do not support exercise as a treatment of ME/CFS, there is no doubt that there is enough uncertainty to justify the review being withdrawn. 'First do no harm', and all that. I hope the IAG has made these points to Cochrane very clearly.

If the old review was withdrawn, I think people with ME/CFS would be much more accepting of the long process to produce a new review.

 

[Caroline Struthers]

Presumably the protocol will report the intention of using the new research integrity tool produced by Cochranites, including Paul Garner, to identify and exclude "problematic" trials. https://onlinelibrary.wiley.com/doi/10.1002/jrsm.1599

Have had another look at Garner and co's "research integrity tool" and it only applies to trials of "investigational medicinal products". No one seems to give a damn about the integrity of trials of behavioural and psychological therapies, physical therapies, surgery etc. Even though blinding is difficult or impossible. I honestly don't understand why Cochrane have this ridiculous (ahem) blind spot.

 

[Jonathan Edwards]

I honestly don't understand why Cochrane have this ridiculous (ahem) blind spot.

Maybe they just don't see it that way?

 

[Snow Leopard]

I honestly don't understand why Cochrane have this ridiculous (ahem) blind spot.

Because to acknowledge it, they'll have to turf most of the evidence from an entire field.

 

[Midnattsol]

Hilda has written a review on what happens when reviews are not updated and becomes "zombie reviews":

Blog: What’s Happening When Living Systematic Reviews…Stop? by Hilda Bastian

 

[FMMM1]

"research integrity tool"

Wow --- sounds like something from science fiction ---- come to think of it, sums this bunch up!

 

[Andy]

The Cochrane review enabling potential harm for people with Long Covid. Ref 4 below is to their review.

"Conditions such as postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome (CFS),4 and debility following bed rest improve with exercise."

From An Exercise Prescription as a Novel Management Strategy for Treatment of Long COVID 2022 Rudofker et al

 

[rvallee]

It also cites an old Gaffney (of LC denial fame) study about deconditioning following extensive bed rest. The vast majority of long haulers do not meet the conditions of that study, it does not apply. This isn't hard to find, the fact that most LC cases had (relatively) mild acute illness is very easy to find, if one bothers. Or cares about pertinence.

But one curious thing is this cites the previous version (2017) of the review. Possibly a clear warning that this is not the latest review is not obvious enough, or is challenging to people with limited reading comprehension, but those excuses should not apply here. It's prominent enough and these people are smart enough to read words and understand their meaning in the context in which they apply.

Maybe because if you click on that warning taking you to the latest (2019) version, the fact that it features an editorial note about the review being (reportedly, one day, perhaps) updated makes for less compelling evidence than citing an old version that is marked as having been replaced.

Then again the German NICE equivalent, IQWIG, basically advises CBT and GET on the basis of the NICE guidelines, which do not advise this. It doesn't appear as if it matters to be consistent, or to bother citing properly, as long as whatever is cited supports the pre-achieved conclusion. Yay evidence-based medicine, where terrible evidence is evidence as long as that evidence supports a cherry-picked conclusion.

 

[Caroline Struthers]

I did a talk for OMEGA (Oxfordshire ME Group for Action) on 29 October which is now on YouTube. It's a story of how I came to be involved in criticizing Cochrane over ME research. There's a lot of detail about the behind the scenes manipulation to allow publication of the amended Excercise review in 2019.


A version for those preferring to read is here


And the Tweet is here

 

[Barry]

I did a talk for OMEGA (Oxfordshire ME Group for Action) on 29 October which is now on YouTube. It's a story of how I came to be involved in criticizing Cochrane over ME research. There's a lot of detail about the behind the scenes manipulation to allow publication of the amended Excercise review in 2019.


A version for those preferring to read is here


And the Tweet is here

That is brilliant Caroline, so very well put together. It would be good if this could get wider coverage. I went for the written document, having that as well as the video is good I think.

Tagging @dave30th in case not yet seen this.

 

[Binkie4]

Thank you so much for your persistence and commitment @Caroline Struthers. Every time there was a step forward, it failed to stick. I have no brain this morning but thank you again for your efforts.

Do we know what happened to Hilda Bastian?

I too went for the written version.

 

[Art Vandelay]

And the Tweet is here

Thank you, Caroline, for all your hard work and persistence regarding this issue.

Given that the RACGP HANDI guide on GET is based on Cochrane's appalling exercise review, I despair at the lack of progress and communication re the new review. I have been meaning to write to our Health Minister to ask why Australian taxpayers are supporting this dysfunctional organisation (Cochrane in this instance) but it is a low priority given my own poor health and that I know that my concerns will be brushed off.

I have, however, mentioned Cochrane's disgraceful behaviour in my submission to the Senate Inquiry into Long COVID.

(I also appreciated the written copy as I find it very difficult to watch a long video.)

 

[Sean]

Thank you, Caroline. Important to keep this stuff in play and on the public record.

It is also deeply ironic considering that a person connected with the Royal College of Psychiatrists covertly texted the Chief Executive of NICE, with whom they are on first name terms, to try and persuade her to retrospectively tamper with the NICE evidence reviews after the ME/CFS guideline had already been agreed and signed off by her own executive team.

This person is widely believed to be Simon Wessely

Shocking. But is anybody surprised?

 

[Caroline Struthers]

I will probably submit a complaint based on the fact the Editor in Chief and the review authors/Fretheim ignored Guyatt's instruction about making it clear in the review that the effect size was not clinically important

 

[Caroline Struthers]

Thank you, Caroline. Important to keep this stuff in play and on the public record.

Yes, I am trying to keep the ball in play in the absence of any information from Hilda or Cochrane

 

[Trish]

The last we heard unofficially was that the Patient Advisory group was still waiting to get sight of a draft protocol for the review from the review writing group. So Hilda may not have any knowledge, let alone control over the long delay so far.