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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!

I was just thinking and it occurred to me that it’s funny I get word finding difficulties in my inner monologue. Does anyone else with an inner monologue get this? I was in the kitchen and I wanted to thingy the thing thing (wash the Tupperware lid) which was crazy because I could picture the...

In the Wikipedia about executive dysfunction it says there has been neuroscience of dysfunction in the basal ganglia thing and frontal lobe. There is a large section on Parkinson’s. I also thought there was a trend of some medical types trying to link ME with ADHD and some theory that ME...

Yes that doesn’t speak to me.

I think it is probably an executive function disorder, if I could find the energy to recall what I read about it, I’d say why. I think what is problematic for the wider world is that it’s intermittent. I have been very often accused straight out of lying, being manipulative, putting it on etc...

:trophy@ :balloons::party: awards and celebrations

I’m generally in some type of low to moderate pain but very occasionally it’s disappeared (when medicating for something else painful) it’s really strange (to me) to feel fatigue with no pain. And weirdly, disappointing to still feel so rubbish despite having no pain. I doubt either of us has...

Brilliant, really punchy.

Template in Google docs https://docs.google.com/document/d/1yCNxI79BicF9Md7QkWzIX8vEcEu6IJ-vwy0OXz3nf3I/edit?tab=t.0

I’d like it if there were a letter/petition to sign