Sam Caveny

My cat Annie’s doing a double-blind placebo-controlled trial on whether making biscuits next to someone with #MECFS will cure them. Publication not expected till 2027 and n=1 but so far side effects appear only positive.

It would be meaningful to me if people with Severe or Very Severe ME could donate our bodies to a lab dedicated to ME research if we died, similar to the CTE research at BU. Would be nice to have that as a small legacy, and I bet we could learn a lot.

Thinking about how it’s validating and exciting to see research on genetic influences for chronic illnesses like EDS and now ME (thanks @decodemestudy.bsky.social!) but is anyone else worried about where this research will be taken in such eugenicist times?

I don’t know how they managed to do it, but I became ill enough to not be able to seek medical care just as I hit my out-of-pocket max 🤨 does UHC control PEM? Perhaps

An #MECFS revenge fantasy sci fi where we siphon the energy of everyone who’s ever gaslit us, à la Rapunzel’s stepmother siphoning her beauty. ME is promptly cured because of all the men falling ill

Well I’ve been bedbound by PEM thanks to #MECFS for several days so here’s a thread of the few coherent thoughts I have as I have them. All ideas free for the taking given I don’t have the energy to execute them!