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Unsurprisingly, the moment it was over, my health got quite a bit better. But it was worth it for the outcomes we achieved.

Awww, shucks, that's lovely! Thank you! I've just rewatched the video and there was so much more I could've said, but not enough time in the world. But I think we did a good job.

It might be a FB thing? I've gone back and set it as an attachment.

Thank you, Trish!

So I think if you want to have impact with this, you need to match it with publicity. #MEAction UK typically arrange a photo shoot when they hand over their petition to the recipient (e.g., NICE). That works well to show how important an issue is and gets local press (sometimes national)...

Thank you! I'm not sure if anyone can see this, but this is us just after the ceremony:

Probably. I think lots of people changed their minds about a lot of things during that process. We ended on very positive terms with NICE and the NGC, so I think they will remember those positive relationships with the lay members. Sometimes, that's all it takes.

So my day-to-day engagements were with Rupert Franklin at NICE (and Simran at the NICE PIP team), Kate Kelley at the NGC/RCP, and the chair and vice chair (Peter and Ilora). All of them were incredibly supportive and professional. I only chatted to Paul Chrisp and Gill Leng a couple of times...

Yes, that's right. Some of the studies didn't even mention PEM. They just said which criteria they used. Others just referred to fatigue worsened by activity, etc. Exactly. I think they worked really hard to have a "balanced" committee. And thank you. We had a really lovely day. Precisely...

My guess is that maybe "positive social identities" means "an identity that means you feel you can still contribute to/have a place in society despite being ill". But that's a stab in the dark.

You're welcome. It's always a pleasure to chat to our Dave! :D Yes, we discussed that at great length. And the ICC and CCC fell behind in the rankings when NICE scored them based on process and rigour, too. The criteria with the broadest range of expertise, the most transparent process and...

Oh yes, they're definitely empire builders.

I had similar concerns about that clinic's responses, but I don't know who wrote them.

Let's do it!

I'd be happy to join them, if we three can pen something?

Reading their briefing, it seems their complaints are minor. The GL already says you can consider reviews more frequently than six months, so that complaint seems churlish. Their GET comment seems misleading. And could possibly get their members in trouble. If they aren't offering GET, they...

It also suggests NICE knew that the criteria might need to be changed and that evidence would have to be downgraded if these new criteria were adopted, regardless of who sat on the committee.

I think there will always be loopholes. I think we avoided the ones we could, but it wasn't possible to close all of them. And we probably had to leave a few loopholes in to get what we wanted (though I think we got in a few loopholes of our own, so that in the long run, we can advocate for...

That's the one. Thanks, Mithriel.

I think we've asked that very question on here before, and it wasn't clear. But I think they meant people referred to the clinic who ended up with an alternative diagnosis.