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They probably thought they'd win in the end. But it's clinically risky for them to keep this out of date info on their websites, because it makes it easier for us to argue they aren't fit for purpose. I think it will help us identify the intractable positions, so we can better engage with them...

They shouldn't be calling it GET in any case. The NICE GL defines what GET is and says not to offer it. It also says risks and benefits must be discussed. You can't give informed consent if your treatment is mislabelled (e.g., giving aspirin instead of paracetamol). I see that charities and...

This video is a great idea. Well done, #MEAction!

The way they pick reviewers is also problematic. NICE at least strives for a balanced and representative guideline development committee, with a separate technical team, and then has things like the consultation to put its findings out into the world and get feedback on them. Cochrane seems...

Charities are already on this, as are NICE.

My understanding is that charities are now focussing on implementation--i.e., how to get the clinics to actually do what's in the guidelines. I think this is sensible. There's a lot of work to do in getting medical education out there and we can make the clinics feel that, at long last, they...

As Sally and I said, several committee members surprised us. But it's hard to know whether they changed their minds for sure. Maybe some of them shifted a bit more, rather than doing a full 180. We didn't have any in-person meetings after COVID happened, so it's difficult to guage. But if...

This person at the clinic is clearly in contravention of GL rec 1.11.11: "Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and...

And there's the fact that RCPsych completely misused their references. Nearly every one said the opposite of what they claimed, or had nothing to do with ME. It's either ignorance, incompetence or deceit. Possibly all three.

Exactly this. NICE was quite clever, really, because without NHS staff represented it would've been so much easier to reject the whole GL. And we can't underestimate how much certain people fought for the committee members we got. I think the only way people like Willie and Charles were on the...

I'm not sure if anyone changed their views. Rather, I think people thought certain things were untenable with the current evidence base. Then again, there was broad on agreement on most things. Everyone genuinely seemed to want to help patients.

I think a lot of them don't follow up, interpret worsening as noncompliance or catastrophising of 'normal setbacks', or just hear what they want to hear. Whenever you improve, that's down to them; whenever you worsen, that's down to you.

You might be unique in this. Most people have fluctuations, yes, but I'm not sure they vacillate so quickly and clearly.

I'll have a look at what it requires and what I can write. Thank you!

Here's what I know: the three resigners had all signed off on the GL in meetings. The reasons for resigning were varied and I think external pressures were a bigger factor than anything else. Everyone on the committee got on and there weren't really any big fallings out.

That's fantastic news!

NICE didn't commission the survey; Forward ME did. That's an error of fact which has been repeated a few times. We should be as accurate as we can.

Yeah, they didn't note their own COIs, of course. Exactly. NICE realised they couldn't have people who were experts and who didn't have opinions. So they tried to balance those opinions instead. Importantly, we all basically had to agree to follow the evidence. This was a question used in our...

On this last one, it's simple: we wouldn't prescribe a drug if we didn't know the ingredients. Why should LP be any different?

My feeling has always been: if you've known people are doing these treatments wrong for over 20 years, why haven't you done anything about it, and why would we trust you to do anything about it within the next 20 years? The onus is on clinicians to prove that they have cleaned up their act and...