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

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?

 

I just wanted to strongly echo @Trish’s point that given Cochrane has acknowledged the exercise review is no longer valid and their delays in moving forward, they really ought to withdraw it and refer people to more recent sources, ie NICE and CDC.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

 

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.

 

Maybe they just don't see it that way?

 

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

 

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

 

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

 

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.

 

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.

https://www.youtube.com/watch?v=P6gKE_-3L80

A version for those preferring to read is here


And the Tweet is here
https://twitter.com/user/status/1593535687017566208

 

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.

 

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.

 

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.)

 

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

 

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