Cochrane ME/CFS GET review temporarily withdrawn

I think it’s notable that they’ve had to resort immediately to the bullying activist line - because they do not have anything of substance to use to support their position.

Yep definitely notable, and I think the Reuters article "smells" as if there was input from the SMC, including the ploy to have quotes from a prominent establishment figure. Blakemore is making a complete idiot of himself with this.

Thanks so very much to all who've worked on this. Thinking of Bob at this time.
 
It breaks my heart to know that Bob is not here to see this. He contributed so much to that. (@vickster )

This could be huge, especially for the NICE review. Thanks to @Esther12 , @dave30th , @Tom Kindlon and all you others who have been a driving force in this.
They have had a year already to address the feedback from the update review that got trashed. They are now having their previous version withdrawn.

We should remember that Bob (Robert Courtney) produced really good comments around them giving PACE a clean bill of health and the outcome switching they did in their own review. They basically failed to answer those comments.
 
I wonder who raised the formal complaint with Tovey, as editor in chief, that he felt had to be listened to.

ETA: and what were the specific questions posed that the editors judged were so important?

See Reuters link.

ETA: “In an emailed response to questions from Reuters, Tovey said: “We are in discussion with the review author team about this review following a formal complaint to me as Cochrane’s editor in chief, which we judged to raise important questions.”

Tovey has known there are issues with this review for a very long time. Coyne complained to him about it and Tovey made excuses about the CoI issues that Coyne but ignored the other issues. To my mind he is the editor and is responsible for a failed editorial process. He is not a suitable person to investigate the review since his inaction is part of the issue.
 
"“in response to concerns raised by members of the CFS community” they are considering moving responsibility for research reviews on CFS/ME away from their mental health department into another section — possibly the “long-term conditions” section."

This review may only be concerned with GET, and not CBT, but if they move responsibility for research reviews on CFS/ME away from mental health then it doesn't bode well for the long term, or even short term, viability of their CBT review either.
 


If I was on Twitter I would respond pointing out that Tovey explicitly says in the article that this *isn't* about "lobby groups bullying scientists because they disagree with the results", regardless of what Blakemore might hysterically claim. (Or as Michael Sharpe would undoubtedly phrase it "Can I suggest you read the paper?")

@dave30th - look what Cochrane got you for your birthday! A retraction! Just what you've always wanted! And it's only a week late...
 
"“in response to concerns raised by members of the CFS community” they are considering moving responsibility for research reviews on CFS/ME away from their mental health department into another section — possibly the “long-term conditions” section."

Even better news!

This makes much more likely the long term possibility of Cochrane actually coming up with something in relation to ME that is not only not harmful but also useful.

[Edited to correct grammar. So excited I keep coming back and rereading this thread.]
 
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She also did a series of training videos for GPs that are worth a look if you want something to raise your blood pressure. Her attitude seemed to be that it is up to patients to prove a treatment is dangerous.

Oh... I think I've actually seen some of those, pretty much training in how to gaslight your patients....? :mad: didn't note the name or make the connection to Wessley though, gaargh!

But - no more! This is a happy day! :balloons:
 
Yep definitely notable, and I think the Reuters article "smells" as if there was input from the SMC, including the ploy to have quotes from a prominent establishment figure. Blakemore is making a complete idiot of himself with this.

Blakemore has been involved before in supporting Wessely in his claims against patients. From 2011 in the Times

https://www.meassociation.org.uk/20...r-colin-blakemore-in-the-times-2-august-2011/

Beneath the words about understanding cfs/ME lies the same meme of patient aggression, extremism etc

ETA: clarified one word
 
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We need to be careful to put this in perspective. Somehow they ignored, dismissed or were unaware of the growing number of world class scientists who are saying what we are saying. Its not patients, alone, or activists, alone, its a growing number of scientists with impeccable credentials. Reuters needs to cover that as well.

It does not help that they are following the standard misrepresentation and bias either. I for one do not care if ME is considered psychiatric or not, I want good science. The substance of the science is important, not the label. We are not getting good science. We are getting atrocious "science" that does not meet the minimal requirements of what I consider even substandard science. Its not really science at all.

This is not being fought on the scientific merits, if it was we would have already won. This is being fought through politics, zombie science, and public relations. To the extent that science is involved its about the scientific establishment, not the science, who are supporting this. The emphasis is on establishment, and most of these do not seem to be scientists but doctors and others who do not adhere to sound scientific practice. That includes some under the Cochrane banner.

We do need to try to keep in mind that we need to address the public relations as well as the science. I almost did not write this post because of this potential conundrum. However I think something needs to be said, and we need to provide our own narrative, one based on evidence, reason, and sound scientific practices.
 
Where's @dave30th?
I was with him a few hours ago at Houses of Parliament - having watched the swans in St James's Park for a bit..

Hopefully he's busy fighting off editors for all the major publications asking him to write on this!

@Esther12 often discusses how it can be problematic to focus too much on the argument about whether it is "mental" or "physical". I'm not convinced that these issues should never be raised but this is a good example that they can backfire and distract from important issues.

Yeah, I don't think it should never be raised, but when people discuss this issue without being very careful with their language it can easily cause us problems. Even when people are careful with their language they can still be misinterpreted, and used to fit into a story of concerns about PACE/CFS/GET being motivated by concerns about the stigma of MH. When we've got so many prejudices against us I think it's normally worth avoiding that topic (unless you're certain you've got lots of time to explain the details, and that the person you're talking to isn't going to try to take something out of context to use against you).
 
Absolutely brilliant news. :woot::party::balloons:

Tempered more than a little by Bob not being around to see the fruits of his hard work. :( :cry:

We all owe him and Tom Kindlon in particular, but also some others, a huge thanks for their first class work, courage, and tenacity in taking on Cochrane. :thumbup:
 
[Clare Gerada] also did a series of training videos for GPs that are worth a look if you want something to raise your blood pressure.
Accountability is coming for the likes of Ms G and her knighted spouse, and the shitty cult they helped create. Proper legal, scientific, and moral accountability. And those videos are one of the more substantive exhibits for the prosecution.
 
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