Cochrane ME/CFS GET review temporarily withdrawn

Cheshire said:
It seems there are more and more people outside the traditional "ME community" coming into the debate with some knowledge of the real problems with CBT/GET trials.

Eg: Dearden's response is spot on
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I see Dearden is Sheffield based. Maybe he’s aware through Simon Duffy at Centre for Welfare Reform who is also in Sheffield. Or they also have a pretty active ME group and did a pretty big Millions Missing event this year.
 
@Brian Hughes said on Twitter:
But seriously I find the stance of some pro-PACE clinicians to be truly breathtaking. They seem intent on demonizing critics in a most ruthless fashion, on misrepresenting the scientific consensus, & on avoiding any argument about the core issue of research (in)competence
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It seems clear they indulge in the demonizing and misrepresenting for the simple reason they have no capability to address the core issue. Please don't fall for it Cochrane!
 
Sasha said:
Just in case anyone is wondering about the context there, 'Alison's head' is a PWME and there's a typo in her tweet - she meant, I think, to say, tongue in cheek, 'Thank you Brian. I’m sorry you’re being lumped in with us lowly bottom feeding sick activists!'
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Ah, thank you, i was a bit worried about how some people saw us, much better with self-irony!
 
SallyC said:
One of her sister Fiona's old blogs says that their sister has CFS and quite honestly I don't know what to do with that information...

http://www.sciencemediacentre.org/n...enfield-and-the-future-of-science-journalism/
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Though there is a third sister, Gemma. My guess that would be the one who has/had 'CFS'.

Now if I was into all that psychology stuff, I could make a number of speculations about Fiona and Claire's utter conviction that Gemma's illness is one of unhelpful beliefs, including stuff about birth order, etc.
 
JohnTheJack said:
Now if I was into all that psychology stuff, I could make a number of speculations about Fiona and Claire's utter conviction that Gemma's illness is one of unhelpful beliefs, including stuff about birth order, etc.
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I suspect Claire and Fiona locked Gemma in the wardrobe and there is a lot of subconscious guilt.

I only hope that if one of them did have ME things have not worked out too badly.
 
sea said:
Absolutely she believes being a patient is a role. That’s why they don’t want to see patients given disability support or useful aids because it reinforces the “role”
The cure obviously is to stop believing you’re ill, stop “acting” as a sick person
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Ahhh. I was wondering about something the past few days, and here comes the answer.

I adjusted swiftly to my restrictions, including keeping PEM as small as possible (well...). One could call this "sickness behavior". I often see how people look. Sometimes they seem aghast or embarrassed. (Please note I am not severe, and I look healthy.) Authorities called it "aggravational and demonstrative behavior". Since people's and authorities' reactions cause unpleasant feelings in myself, I was earnestly considering to play the healthy role - at my expense of course. After a second thought I decided it's not worth jeopardizing my health further due to people who can't bear to see sickness.

I think maybe that's one problem: Today, most people don't want to see unpleasant things. Maybe like Prince Sidharta's father who wanted to protect his child from any suffering (which can't work). It seems that sick people should not show their sickness because it reminds the others of suffering - which is an unpleasant feeling and therefore unwelcome. À la "If we have to pay you, grrr - could you please not be a pain in the ass otherwise?"
 
rvallee said:
I will write a letter to the Reuters editor. Not sure how long it will take but will try to have it done quickly. I will put it here for feedback when I have a first draft.

The reporter and editor of this story need to provide evidence of their claims.
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Churnalism...

"...is a pejorative term for a form of journalism in which press releases, stories provided by news agencies, and other forms of pre-packaged material, instead of reported news, are used to create articles in newspapers and other news media."

Churnalism - Wikipediahttps://en.wikipedia.org/wiki/Churnalism
 
I have made an early draft and would appreciate some feedback, especially in the naming names department. This will be sent only to the relevant Reuters editor so it likely will not be made public but there are people here concerned and I may have missed a few salient details.

This is early but I don't want to send it much later than mid-week so I'm at least putting the rough outline forward. I'm copying from Google Docs so apologies if formatting is screwed up.


To the editors and managing editor responsible for the publication of the report titled “Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints”,...

Moderator note

The rest of this letter and the subsequent discussion with editorial suggestions has been moved to a new thread here:
Letter to Reuters about their Cochrane ME/CFS GET review article
 
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This slightly OT but I was looking at the Cochrane CBT for ME review again.

This review came out in 2008 and despite noting some greater reduction in reports of fatigue in studies of CBT at the end of treatment the final conclusion is quite clearly negative. The evidence is not considered consistent or convincing and more studies are needed.

That of course is interesting in the light of the claim that PACE changed nothing and that it was already known that CBT worked. In fact systematic review says 'not proven'.

The timing is interesting because NICE had set up guidelines in 2007, before this negative systematic review. It would be reasonable to think, therefore, that in 2017, this negative review might have prompted a review of the guidelines. It would have to be assumed that the decision in 2007 was not substantiated by later analysis.

The only reason for not doing this would be an assumption that PACE had sorted the matter out in favour of CBT. But like the previous studies PACE showed no greater effect with CBT at follow up.
 
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