Cochrane ME/CFS GET review temporarily withdrawn

Inara said:
Who is Andy Dearden?
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I don't know, just came about him in some twitter-thread about the review withdraw. He seemes to be informed about ME? @NelliePledge made this observation earlier in this thread :)

NelliePledge said:
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.
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inox said:
I'm finding it kind of funny, that once again the bps-crowd actually ends up helping us, I think, when they didn't intend to do so.

As the review actually isn't withdrawn yet, but trough their own actions they've drawn everyones attention to it, and that there may be problems with the evidence for exercise-based therapy for ME. And most reading these articles will think the review is already gone.

Whereas, had they just said nothing, they wouldn't have opened this discussion - and they've managed to get much more exposure to it than patients advocates could have managed on their own.


Am also wondering what's happening behind the sceenes now? Would think they are finally in dialogue with the reviewers? Can't imagine the cochrane editors are to happy about this internal affaire beeing dragged out in the media. Oh, to be a fly on the wall...
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I think it's pretty obvious they did this to preempt the withdrawal, bullying Tovey into not taking a step that will be hard to reverse.

They're that predictable. The potential for bad attention is worth it when they control the message and can have false allegations of misconduct published as fact on a major newswire service.

But on the long run, this will hurt them badly. There is no explanation that can be given to flat out lying about the actions of one of the sickest patient populations being unhinged militant activists. It's completely absurd on its face and hindsight will make it look extremely damning, especially given their history of making up those claims and having to admit in court that they had no substance (heckling is not bullying, their claims are of outright bullying).

They are edging ahead on this battle but it will blow up in their face. It will show bad faith and indifference to our plight, which will look particularly bad when juxtaposed with years and years of petitions and direct testimony of harm from their work.
 
I see Cort Johnson has blogged about this too: https://www.healthrising.org/blog/2...cbt-get-proponents-emboldens-me-cfs-advocates

However, I really don't think it is helpful to counter misinformation with more misinformation. For example:

Cort_Cochrane_19oct18.png

The first quote is about the comparison between GET and CBT - so of course there is no difference.
The second quote is about the comparison between GET and passive control. But none of that is made clear in the text.

Just saying.

[ETA: This has now been corrected.]
 
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Lucibee said:
The first quote is about the comparison between GET and CBT - so of course there is no difference.
The second quote is about the comparison between GET and passive control. But none of that is made clear in the text.

Just saying.
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Unfortunately it's not uncommon for articles, or at least part of them, from Cort to be inaccurate, at least in my experience.
 
Jonathan Edwards said:
The fallacy I see is the idea is that there is an 'unconscious mind' similar to the conscious mind but hidden, like a ghost writer. Both are seen as 'agents'. So the 'unconscious mind' is theorised about by psychologists as if it 'thought' in a conscious way but without telling us and could be predicted to behave like a conscious mind.
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Ah, I'd never imagined it being modelled in that way. My very unscientific way of imagining things, is more as hierarchical layers, with the unconscious being a sort of "foundation" layer on which the conscious sits. A pet theory (even less scientific) of mine is that problems arise when the two fail to interact as well as they should. It feels to me that art, music, poetry, maybe sport, etc. are things which help people's conscious and unconscious to better interact with each other.
 
Lucibee said:
I tried to leave a comment - but maybe it didn't get through, or something.
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This is up in the comments section:

917622ed08c8aebb7540122ee4d6c012

Lucibee on October 22, 2018 at 8:51 am


There is an error in your report – the quote about “little or no difference” from the main results section is about the comparison of GET vs CBT, and not about GET vs control, which the quote from the conclusions is about.

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Cort Johnson on October 22, 2018 at 9:48 am
Thanks! I removed that part of the blog. That was a big boo-boo and thanks for pointing it out. It was a long, long results section and I didn’t read it carefully enough.
 
Barry said:
My very unscientific way of imagining things, is more as hierarchical layers, with the unconscious being a sort of "foundation" layer on which the conscious sits.
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Well, it is no less scientific than the way these neo-Freudians imagine it I am sure and probably nearer reality. The trouble is either way you cannot write down any equations that even predict vague probabilities about what will happen under specific circumstances. You cannot built testable scientific theories unless you have a handle on mechanism in some quantitative way.
 
strategist said:
One thing is clear: the PACE people are digging an ever deeper hole for themselves by continuing to misrepresent reality.

It is very hard to avoid seeing them as malicious once you know how they have behaved.
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Retirement may be the get out. This is Britain, as @dave30th has found out, things are done differently. When there has been a cock up , a huge degree of face saving is involved.
 
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