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:laugh::laugh:

“Only the few baying for blood” presumably

I dream of a sanatorium, I read too much of the Chalet School books as a child! A place where you go for 6 months to rest, relax, take the air and the waters, read, sleep.

Yeah WOW I know I’m just a person, but I’m a person who used to have a corporate job. I just cannot fathom the emotive/personal feelings output with the MEA (and Tyson) organisations and their reps just don’t behave like that in my world! This language about people being “silly, nonsense, baying...

If I absolutely overdo repeatedly I get horrible vertigo which stops me doing anything

A side thought. I live alone with a cat, so I am able to control my environment. We often sit is silence, I don’t have to keep the place tidy/visitor friendly every day etc. I have had some time staying with relatives and I don’t think I could live with other people. They make noise, they talk...

Never heard that said! If I did, I’d argue that’s nonsense.

Good idea @Hutan, sorry to be a pest but can we have a yes/no poll on that thread as well?

Yes, my n=1 experience of sleep apnoea was terrible brain fog and noticeably poor cognition, which has been partially resolved by getting CPAP. The ME is still there, though.

Yeah, straining at the leash is me! There are some things which physically ruin me but they’re worth it for the mental benefits. I have my hair done. When I was worse I left it, as soon as I could start again, I did. It just makes me happy. Same with the cat, she is a big energy sucker sometimes...

The threshold isn’t totally fixed, though. If you said to me right now, go outside and walk 1 mile to x place and I will give you £1000, I’d do it. I could force myself. And I’d be destroyed, probably would miss my GP appointment later in the week. In real life -Am I going to hoover today? No...

What causes PEM in your case then? Is it emotional or mental exertion, sensory?

Yeah it’s weird the MEA in the socials is all “happy Xmas, nominate a hero” and smiling Xmas scenes. Meanwhile behind the scenes is very murky. AGM arrangements absent; paternalistic op-Ed’s and PROMS. When you have been talked “at” for as long as we have, the last thing we needed was to be...

This is why FUNCAP is revolutionary

Yes it’s the “cumulative PEM” thing. I overdo it a bit today, not much, a little rough tomorrow and the next day. I overdo it a bit every 3 days for two weeks, two months, six months….different story.

An information and support charity should give only relevant accurate information, and it should be supportive.

I suspect the MEA are going to do nothing, based on recent behaviours I think they are wrong and strong.

With the whatsits

I think it’s lovely that such beneficent elders bestow their “n=1 I know everything” knowledge upon us. Looking forward to him giving out lottery numbers next!

I think it happens more often in my mind!