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I do think I’ve had narcoleptic incidents, but they feel very distinct from MECFS. I don’t know if you can have intermittent narcolepsy. The cataplexy ones some are after laughing, they seem different than the ones where you’re too fatigued to move to say, get off a bus. My tounge is a separate...

I once walked up 21 flights of stairs whilst sitting on a tube (Piccadilly line) apparently I currently swim most days too.

I just assumed it’s cataplexy. Want to move but can’t. Just wait until you can. Tends to be all of me though.

Yeah, I feel better after I’ve had my hair done, chat, cup of tea. So what? Now I have to live in the salon if I want that feeling every day?

Why would I listen to him, he’s not someone who has ever recovered from it.

Might interest you https://www.overlappingillnessalliance.org.uk/

The PACE trial data? NICE ng206 wrote about it.

Send them “the letter” with the BACMe guide

Sounds a lot like the “narcissists prayer”

I haven’t read this, but am going to guess that the people who receive the diagnoses are in some way thought to be at fault. Did I guess right?

Am I seeing dodgy where there is none? Karen who is Ren who is H4ME which sounds like S4ME more than it sounds like the MEA

Ah the overachiever “false equivalence” Do you want to be a lazy person who did nothing before you got ME, in which case maybe you’re just even more lazy than before, and your problem is laziness. Or do you want to make it known you were previously very capable doing work/study, exercise...

Are they all Russell Fleming? Is he the manager of research who reports to head of research, as well as being a Co-author of the research undertaken, perhaps?

I would say I was better on Mounjaro than Wegovy.

I hate this delusion. I don’t even have endo (well I might, nobody has ever looked into it properly) but yeah having regular pain which takes your breath away, the sort of pain which you would call am ambulance for if you didn’t know what was causing it, yet you generally keep quiet about, hide...

That’s actually what BACME are doing! In, out, in, out, pacing up isn’t GET, shake it all about!

Shall we set up “Support ME” next?

I don’t think we will ever see an “ME sanatorium” type of ward. I think at best it will be a special individual room a bit further from the noise, with blackout curtains and warning signs on the door, with tightly-regulated entry overseen by some sort of medic in charge/controller. It will...

I had the experience of two ME clinic referrals post-Covid. One required in-person attendance (including for bloods and urine samples) one I saw online only. My first thoughts on a service is that there are fairly standard things to be checked, could these be agreed upon (am guessing bloods...