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

dave30th said:
I mean, how are they claiming their interventions are evidence-based if it's not the interventions as described and they have no data proving the new versions are beneficial? I'm confused because it is so obviously incoherent and illogical to make these points.
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No, @dave30th, you're not confused;). You have been in this business too long for that.
You got it in one.
 
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.
 
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Skycloud said:
That couldn’t happen could it?
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I suspect only if NICE gets so bored of life they decide to press the self-destruct button.

Skycloud said:
to create such a stink
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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.
 
Michiel Tack said:
Disappointed by the statements of the royal colleges. BACME seemed ok to work with the new guideline.

Nonetheless, I think the publication of this new guideline is an important change for the ME/CFS community. Evelien and I have written a blog post to put things in perspective. It's mostly written for people who do not know the whole background for example friends, family, and acquaintances.

A historic change for the ME/CFS community
Today, on 29 October 2021, the National Institute for Health and Care Excellence (NICE) has finally published its new guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community. This blog post tries to clarify why.

Full text: https://mecfsskeptic.com/a-historic-change-for-the-me-cfs-community/
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Well done on this article. One could write whole books on the issues but this summarises them well (as usual).
 
Kitty said:
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.
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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.
 
Skycloud said:
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.
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Skycloud said:
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.
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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.
 
Jonathan Edwards said:
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.
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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...
 
Jonathan Edwards said:
So four of the RC signatories were at round table and did not make a squeak about knowing the treatments worked and whatever.

I should think that some people associated with NICE will be pretty fed up with this.
Maybe next time they won't bother with a pause, just get on with it.
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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.
 
dave30th said:
Did they state that GET was not a good name and that the clinical services actually don't do GET? Did they provide any evidence that their whatever pace-based rehab approach works beyond that they've seen it in clinical practice? I mean, how are they claiming their interventions are evidence-based if it's not the interventions as described and they have no data proving the new versions are beneficial? I'm confused because it is so obviously incoherent and illogical to make these points.

Are they stupid or do they think everyone else is stupid, or maybe they're just trapped in some sort of brain warp effect?
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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.
 
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