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- mangles well known saying “correlation is not causation” - immediately ascribes correlation as causation immediately after stating it

“Pacing up” is unevidenced “Increasing your baseline” is unevidenced Anyone recommending this needs to provide evidence that it’s proven to help, or stop recommending it. The community needs to shout this louder.

I think at this point we don’t need it. We know the initial research is junk but that doesn’t matter, because it’s so stale it’s out of date altogether and can be wholesale dismissed.

In the comments the poster confirms this treatment is at Bath…

There’s never been a long range study across 2+ years, certainly not 5+ or 10+. Yet this is an illness which people very rarely recover from. So they can go about in circles pretending PACE showed GET is helpful but, if that was even true (which it isn’t) that’s only in the short term...

The word I keep thinking of is “modulate” not sure why. Maybe I mean moderate. All pacing does is try and reduce the extremes of crashing/recovering/overdoing. It doesn’t erase them, just makes them a bit less. Medics and society seem stuck on a “quid pro quo” cause and effect thing - overdo it...

“End up using the next days energy too” oh my days. I can’t even. In my previous job I encountered obviously neurodivergent people in their 50s who were never diagnosed. If they were at school today, they absolutely would be. I always tried to quietly accommodate their differences to support...

It’s basically gossiping,

I don’t see it as a problem with “holistic” I see it as another iteration of the ultimate problem. Which is something like -victim blaming/your illness makes me uncomfortable/failure to improve is your fault/choice- moralising and blame. Sick people are always not sick enough; unless they’re...

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?