Cochrane ME/CFS GET review temporarily withdrawn

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.

 

Ah.. I see. Thank you @Andy and @Keela Too as well - sometimes it feels like we need a Game of Thrones style map/viewers guide of all involved and their role in the plot....

 

"“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...

 

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.]

 

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

But - no more! This is a happy day!

 

http://uk.businessinsider.com/r-exc...view-amid-patient-activist-complaints-2018-10

 

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

 

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.

 

It will be interesting to see if more articles have the familiar SMC tactics. I wish someone on their media contact list would make their behind the scenes manipulations public.

 

Well she would say that, wouldn't she.

Well done to all the so called activists who pointed out all the scientific problems with Cochrane because despite what CG claims that is what this decision is all about.

 

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

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).

 

Kate Kelland who wrote the Reuters article has a history of bias, and links with the SMC were pointed out a year ago.

https://usrtk.org/our-investigations/acc_loves_katekelland/

It’s quite a long article to read before the SMC emerges into the story. I always thought Reuters was a model of reliability in reporting. I got that wrong.

 

https://twitter.com/user/status/1052740417828073472

 

https://twitter.com/user/status/1052690511113412608

https://twitter.com/user/status/1052749937631481856