Cochrane ME/CFS GET review temporarily withdrawn

From the link above https://community.cochrane.org/edit...ublished-cochrane-reviews-including-protocols

Does this mean the clock is ticking on the new individual patient data GET review? If so, how much time is left?

 

Echoes of Fiona Fox:

“I do feel that being one of the few people in the world who can really understand imposes a certain burden and definite isolation ... quite frankly if it is a choice between carrying the burden of RCP politics and ending up like my old friend Carol there's no choice involved.”

(See: https://www.s4me.info/threads/artic...he-revolutionary-communist-party-c-1996.3452/)

Meanwhile, Cochrane seems to be taking its time to respond. I wonder what is going on behind the scenes.

I also wonder if @dave30th should invite David Tovey to sign the open letter to The Lancet now that he has presumably had his eyes opened to the problems associated with BPS research and the way the BPS mob operates. I don’t know all the history, so it might be a stupid suggestion, but he might just welcome the opportunity to administer the coup de grace having been subjected to this attack.

[edited to correct quote]

 

https://twitter.com/user/status/1055224090108153856

 

My impression is that's more directed at people posting protocols but not really working on their review? This review is written up, since we know it's been to peer-review - but have problems passing that.

 

Given our liking for nautical imagery, this is beginning to look like The Raft of the Medusa. Where's Gericault when you need him?

One could be forgiven for thinking that those who thought they had power to make the relevant decision have been disabused and shown where real power lies. There seems to be in place a policy of damage maximisation. No doubt there is a protocol for it.

 

https://twitter.com/user/status/1055292060482199552

https://twitter.com/user/status/1055354126878588928

 

@mango shared in the Scandinavia thread that the Swedish news site for medicine, Dagens Medicin, has a paywalled article about the Cochrane withdrawal. I had a look and here is a summarisation in English. Nothing new, and odd that he claims the PACE trial has also been withdrawn, but he makes some interesting observations about patients and medical research. The title is: Withdrawn ME-overview seen as quiet before the storm.

This is an article about the Cochrane withdrawal with an interview of ME doctor Björn Bragée. He is not surprised that the review gets withdrawn.

He says this patient cooperative is not like any patient cooperative that quietly observes research and such. These people are very well read and knowledgable. And they mobilise, rightly so, together with the researchers that have other views.

He says this is sensational, but has happened before and mentions that the Lancet withdrew an article about ME and CBT, the so-called PACE trial ( )

He says the professionalism he meets on a daily basis from his patients has made him humble. He says those days are over when research could be done without the patients having any opinions and that this is the first patient group that shows this.

This will eventually happen within all fields. This is just a ripple on the water until the tsunami arrives. He criticises the attitude from colleagues that patients shouldn't interfere with science. If you publish something, you have to accept being asked questions.

 

https://twitter.com/user/status/1055375311435694081

 

@Kalliope Apparently the Dagens Medicin article has been updated now, to correct the bit about PACE. Could you please check again, see what it says now?

 

Quotable quote in the preview, picture text:


"Science is science and it will be questioned when there are reasons to do so. Cochrane will not withdraw anything just because there are obstinate relatives or patients." No, no, no. They do it because there are flaws or things that need to be supplemented " , says Björn Bragée.

 

Things seem to be gathering PACE .

 

Yes, it has been corrected now The point that's made now regarding the PACE trial is that this trial too has received criticism. But it says that the PACE trial is a trial on CBT as treatment for ME. They forgot the GET-bit..

Samtidigt påpekar han att liknande saker har inträffat förut och nämner den kraftiga kritiken mot en studie om ME och KBT, den så kallade Pace-studien, som publicerats i the Lancet.

 

MS patients have also been asking to have their views on research taken into account, so we're not the only patient group who want this.

 

Could have been funny But sadly that's not at all the signals I'm getting re: the national guidelines projects etc (most of them seem to rely heavily on the Cochrane reports) here in Sweden...

 

A rolling PACE gathers no blood?

 

I undestand dr. bragee may be somewhat controverisal, but this is good

Would think he has been confronted by patients himself, on some claims not that grounded in seriouse research?

https://twitter.com/user/status/1055418257723793408

 

Norwegian article - CFS / ME: Cochrane wants to retrieve summary article - based on the reuters story, but also their take on this, and more factual even if they don't include anything about what the criticism actually is.

Larun is a physiotherapist, and the journal is the norwegian journal for physiotherapist. They've managed to get this statement:

https://twitter.com/user/status/1055409478689062912

 

That sounds bad.

It would be appalling if Cochrane caved in after Larun had responded to concerns about her work so evasively, and then when Cochrane's admin felt they had to take action, by helping to promote prejudices about patients in the media. She has shown she is completely unfit to be holding such a position of authority.