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Is he still being silenced then? You’d think they would want to give samples of blood to show Chris Ponting, it would be fascinating to see if they have the same patterns within as MECFS patients.

Is this the big research he was going on about the other week?Please someone ask him why PEM is delayed?

When they announce this major trial next year they think we’ll all have egg on our faces.

Pubs and restaurants! Even if the loo is on the same floor it’s a long walk. IF (a big if)

I had a year or two of spontaneous recovery apropos of nothing, then started to deteriorate repeatedly until the big one I’ve never recovered from. I’m quite glad it happened when I wasn’t doing anything different that I could peg it to.

Did you rest because militant anti-recovery people hid the lightening process and GET from you, and forced you to rest?

Yes, I know this is based on what some people have said to Dave30th, but I’d want to know why they felt they had been recovered longer than they had realised? Because it’s impossible to know! Is it a “loaded” statement? As per BPS theory that “militant anti-recovery activists” have convinced...

: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...