UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Some of them are ladies though.

 

No, @dave30th, you're not confused. You have been in this business too long for that.
You got it in one.

 

We had a few comments about how nobody does GET like that any more. But someone from the NICE side made the point you made. Which was met with silence.

 

They know now what it feels like to be the target of people whose arguments are so slippery it's like trying to nail jelly to a wall.

 

Reposting (I put it in the wrong thread before) with a few minor changes.

Perhaps all this will at some future point be seen as a necessary and eventually helpful laying of cards on the table, out in the open where all can see. One can hope?

I’m not good at guessing what people are up to or reading between lines these (and usually prefer not to), but I wonder whether the plan, if there is a plan, is to create such a stink that NICE is forced into withdrawing the guideline and the whole thing being done again with a new preferred evidence review, and preferred expert testimony from people with the preferred brand of equipoise and disinterest and a committee full of preferred people.

That couldn’t happen could it? The thought scares me eta that we could go through all this again.

Eta There just seems to be such a lot of criticism of each of those things from various quarters. Perhaps I’m letting all of it get to me too much.

 

I suspect only if NICE gets so bored of life they decide to press the self-destruct button.

There's real jeopardy and there's bleating. I only hear bleating so far, and from a very small number of people.

If they had any substantial arguments, they'd have leveraged them when there was still time to make a difference.

 

I guess I am the only regular member here to have been at the round table. My memory is that all present were asked if they approved of publication of the guideline and there was no dissent.

This suggests that at least four people have a complete contempt for NICE's process.

 

Thanks for that, Kitty.

 

Well done on this article. One could write whole books on the issues but this summarises them well (as usual).

 

This is the point. Even now - or maybe especially now - they can only do what they have always done, perpetually complain that their flawed science and reasoning has not been taken on board, and constantly disguise their complaining as the voice of the patient.

 

I mean yeah. That’s probably the hope for at least one or two of them. No that will not happen. Not because there is sense or justice in this area. It’s just a bad tactic badly timed too late and badly conceived and badly implemented by them.
They will hit us with effective challenge, sooner than we’d like. But this current tactic is spent.

 

If only NICE had recorded or broadcast the RT, that could have put an end to the nonsense and shown these people for what they are...

 

Have they been published yet?

 

They're under the heading 'Stakeholder workshop' on the documents page, along with a roundtable presentation pdf and the agenda and discussion points:

https://www.nice.org.uk/guidance/ng206/history

[PDF] https://www.nice.org.uk/guidance/ng206/documents/minutes-31

 

They have now https://www.nice.org.uk/guidance/ng206/documents/minutes-31

 

I think it must have really opened NICE's eyes to what the ME/CFS community have been dealing with all these decades, and what it is like being on the receiving end of that. And especially how vastly more difficult it is for those who, far from having the clout that NICE have, are completely the opposite and very vulnerable. Setting themselves against those at NICE doesn't sound like a sensible move on their part, when they may one day be looking for all the friends they can find.

 

Sadly this argument has been around for a long time and being utterly stupid hasn't stopped it from spreading unchallenged. Many of the proponents of the model claim they do not do GET, yet the only evidence for this entire paradigm is... GET. So they openly admit they don't have any evidence, but since that's embarrassing they point to something that is not what they do, even though it is. Basically they call what they do pacing, even though it's not at all pacing, but is actually GET, for which they point to evidence that does not support GET but aimed to discredit pacing.

So it's not even a new argument. It's not even stupider than before, it already was peak stupid. Or to quote Mitch: it was stupid, it's still stupid, but it used to be, too.

 

Can anyone see the separate slide sets the minutes refer to?