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Did you find that reference by Dr Roy in the end? I know I recalled it but you wanted to see where it was.

Is that good enough reason to think you should “tell” people not to discuss the name? The whole point of my post being the unreasonableness of charity trustees/ex-trustees wishing to “police” what is discussed?

One theme I find interesting (and a turn-off) is people who want to police what others say/discuss etc. You may find it unhelpful, useless and undermining to discuss the name of the illness. However this maybe the first time I have had the opportunity to do so. And in any case, if people wish...

It’s really hard for me to understand being “misdiagnosed” with agoraphobia if it was really ME/CFS. I was always an extrovert who loved being out, going to places. I still would be if I had the energy.

It’s annoying that it’s seen as an “ME patient community” behaviour. There are countless examples of people doing a “pile-on” or bombarding people, politicians, TV presenters etc with opinions. I’m sure there are strategies to deal with it, in this day and age. It’s a feature of social media...

Nobody has been on to police the comments since this morning?

It would not be appropriate. However, issuing guidance in accordance with Nice 2021 could be. But Neil would fall foul of that.

It’s ok we have Charles and Neil to represent. I’m being sarcastic.

They clearly employed the wrong one. Recruited and signed off by the Board, I assume, as is usual?

Yes, when I worked in charities, even if there were very involved trustees (passion project type) they weren’t involved daily. And nor should they be. That’s not the role.

I know we would all like todo more than we can, but the important and difficult part is doing less. There’s no support or input for that, I suppose it’s too difficult. But increasing/pacing up etc, it gets so much attention and discussion yet it’s putting the cart before the horse. Zero...

There is more than one “voice” in that statement. Hence you can tell there’s some “spin” in it. “Your charity” stood out. It has never felt less like “my” charity that it does this year, starting with Tyson and ending with the AGM. I also disliked the end asking for people to come forward to...

In fairness to AfME Sonia did say recently that all materials will be reviewed and they aren’t going to be written by Gladwell? After the care plan disaster.

Anybody with an unknown, un researched illness can be rehabilitated via regular means.

Not many responses yet, will be interested to see the final output

That’s two questions in one on the survey proper. Very poor way to phrase a survey question.

Also laugh out loud lol from me. Although, if there is somewhere doing care and management plans, this might show us where. I assume they are done in the following parts of the UK- Narnia The visiting world at the top of the Faraway Tree Never Never Land Appointments are at a billionty past...

Excellent Trish! I thought we are all type A Alpha overdoing perfectionists. The worst thing you can do with people like that is say “don’t overdo it, just do a little bit” /sarcasm Pacing up always reminds me of why you’re not allowed to do weight watchers etc if you have an eating disorder...

Exactly, that’s why we don’t have enough useful experienced doctors.

Are there expert doctors who can make sensible decisions on use of resources though? Seems like everything is a paint-by-numbers “pathway” these days.