NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Wits_End said:
Could I suggest that this is a sufficiently important subject that it might be worth having its own thread, rather than hiding in a 1000+-post thread? There may already be one in existence, of course. A "what to say when people ask awkward questions about ME"-type thread, perhaps? I can certainly see one having a life way beyond the immediate "new NICE guidelines" discussion.
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I think there are several threads discussing this topic. Not sure which one is the most appropriate.

A members-only thread that includes somewhat related discussions on this topic but with another focus is here:
https://www.s4me.info/threads/non-e...omedical-and-psychological-me-research.18266/
 
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strategist said:
There is a reason that CBT/GET proponents often pre-emptively frame "psychological vs organic" debate as something that should be avoided: because once you weigh in the for and against of both arguments, the organic side is much more plausible. Reality simply doesn't align with the proposed ideas of psychological causation.
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I just saw a thread yesterday of some guy trying so damn hard to argue that LC is psychological. There was no substance to it, nothing but "it could be", and pointing at the history of psychosomatics, which is essentially made-up entirely of "it could have been psychological", even though in every case a pathogenic cause is far more likely and rational. Seriously twisting himself into a pretzel trying to pretend this isn't just his opinion, but never able to actually argue anything. It was so damn meandering trying to get to the conclusion it started from.

It's really all the argument boils down to: it could be psychological. That's all this has ever been, in every case or event argued as "mass hysteria" or psychosomatic otherwise, it's nothing more than "it could have been". So the only response that makes sense to me is that it's at least equally likely that it could have been pathogenic, after all it's what pathogens do.
 
strategist said:
In so far as this idea of a psychological cause is testable (to a limited degree) it's not supported by data and doesn't align well with patient experience. Pointing this out is important and seems to me "engaging in the psychological vs organic" debate.
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yes, something like this. I agree with Jonathan that the hypothesis essentially falls whether or not it is psychologically oriented. But one of the reasons it falls is that assumptions of psychological factors causing symptoms are simply unprovable and untestable. So the argument does inherently involve whether their psychological construct of the illness is valid. And pointing out that the psychological construct is not valid is engaging in the debate that people say they don't want to engage in.
 
Imagine if there was a situation like this:

Some people believe enteroviruses cause ME and they have devised a treatment with antivirals that is meant to kill enteroviruses and cure patients.
The data they have in support of this approach is weak and contradictory and a clinical trial fails to show any meaningful benefits across a range of outcomes.

These people then in public debates say they do not want to have "enterovirus vs other causes" debate whilst actually continuing to advocate for their enterovirus treatment in the media. What they are really doing here is trying to promote their false ideas unchallenged.
 
strategist said:
Imagine if there was a situation like this:

Some people believe enteroviruses cause ME and they have devised a treatment with antivirals that is meant to kill enteroviruses and cure patients.
The data they have in support of this approach is weak and contradictory and a clinical trial fails to show any meaningful benefits across a range of outcomes.

These people then in public debates say they do not want to have "enterovirus vs other causes" debate whilst actually continuing to advocate for their enterovirus treatment in the media. What they are really doing here is trying to promote their false ideas unchallenged.
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yes, this!
 
Sean O’Neill has written a good article in The Times today
https://www.thetimes.co.uk/article/...myalgic-encephalomyelitis-abandoned-r268lkv7x

“Doctors will be told this week to stop recommending two controversial treatments for the debilitating condition myalgic encephalomyelitis (ME) in a move which will provoke an angry backlash from the medical profession.

The Times has learnt that new guidelines from the National Institute for Health and Care Excellence (Nice) will say graded exercise therapy (Get) should no longer be offered to people with ME. Cognitive behavioural therapy (CBT), a talking therapy previously seen as having a curative role, should only be offered to support patients in dealing with the anxiety of being ill.

The guidelines will also emphasise the importance of early diagnosis, doctors believing their patients and better access to disability aids, including blue badges for motorists with ME.
…..”
 
Today's Times:

Print edition:

Disputed therapies for ME abandoned

Tuesday August 17, 2021

Sean O'Neill

Doctors will be told this week to stop recommending two controversial treatments for the debilitating condition myalgic encephalomyeltis (ME) in a move which will provoke an angry backlash from the medical profession...

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Online:

https://www.thetimes.co.uk/article/...myalgic-encephalomyelitis-abandoned-r268lkv7x

Disputed therapies for myalgic encephalomyelitis abandoned

Sean O’Neill
Tuesday August 17 2021, 12.01am, The Times

Doctors will be told this week to stop recommending two controversial treatments for the debilitating condition myalgic encephalomyelitis (ME) in a move which will provoke an angry backlash from the medical profession.

The Times has learnt that new guidelines from the National Institute for Health and Care Excellence (Nice) will say graded exercise therapy (Get) should no longer be offered to people with ME. Cognitive behavioural therapy (CBT), a talking therapy previously seen as having a curative role, should only be offered to support patients in dealing with the anxiety of being ill.

[Rest of article behind paywall]

Crossed posted with Daisybell.
 
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"The Times understands that leading medical bodies are considering refusing to endorse the guidance. A spokeswoman for the Royal College of Physicians said it raised concerns with NICE when a draft was issued last November. She added "we will let our members know if we have concerns about any elements of the guidelines."
 
Jonathan Edwards said:
It looks as if an editor has gerrymandered this. It is opaque as to what my comment refers to.
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Will you ask for a correction / clarification?

Edited to add: Question now redundant.

The printed version is different from the online version.

The complete and correct quote from Jonathan Edwards is in the online article.

Jonathan Edwards said:
Sean said he was furious about it and ensured that it was put right for the e-version.
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Code: 
https://twitter.com/ABrokenBattery/status/1427536240711249927

-- thank you @Adam pwme for your Tweets and @Michiel Tack for pointing me towards them

(Edited to remove embedded media)
 
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Dx Revision Watch said:
"The Times understands that leading medical bodies are considering refusing to endorse the guidance. A spokeswoman for the Royal College of Physicians said it raised concerns with NICE when a draft was issued last November. She added "we will let our members know if we have concerns about any elements of the guidelines."
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It's been running through my mind that the draft NICE Guidelines represent a positive development for NICE. I.e. NICE finding it's way back to its original founding principles - don't be distracted by the lobby/vested interests --- decide on the basis of the evidence --- Well it looks as if vested interests won't let NICE reclaim those founding principles easily --- the Royal College of Physicians --- just shows how naive I've been about the great and the good.
 
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