I love this analogy about pacing for severe #mecfs and #LongCovid patients. ❤️

***we need help with caretaking overnight tonight into tomorrow morning!!!***
we have a hotel, someone can be here until around 8pm
i have to leave today at 12 pm, i can be back tomorrow to help with transportation, but we need someone COVID conscious overnight from at least 8pm!

🚨ATTENTION: URGENT MUTUAL AID NEEDED🚨

UNHOUSED SEVERE #LongCovid / #pwME IN NY

Discharged from hospital & another hospital would not admit despite being 69 lbs on presentation to ED

They are in a hotel now but desperately NEED support
cashapp $softbbyboy
paypal hopestarmasacre

When Does Self Care Become Harmful?

I’m desperate to feel better.  I would do *anything* to feel better and I spend an enormous amount of energy following routines and taking medications and supplements to try to get better.  

This desperation to get better is something we all…

Please share urgent fundraiser for a ME/CFS patient in need ❤️

Aftab Khan, MD This is just because you likely paid no attention to (or worse ignored & dismissed) the existence of infection associated chronic illnesses for your whole career until now. Please acknowledge this. Diseases like ME/CFS & POTS are also triggered by flu. You just didn’t see it.

I worry that #MedTwitter see our cries for help & better care, & our reports of harms under medical care as attacks on them.

But they’re cries for help, for better treatment & medical services. We don’t want to have to fear mistreatment any longer 😪 #MyalgicEncephalomyelitis

Pam C things heal. cells renew. we see evidence of healing everywhere. when the foot is taken off the pedal the car slows (it just takes some time). there are few types of damage in the human body that are truly permanent and most of these need to progress to 'end-stage' before they…

Toolkit for Carla’s Twitter storm on Thursday! Huge thanks to fiarh for putting this together using the one I made for Millie, I’m severe & pretty burnt out but the community comes together!

Pls suggest edits in the comments 👇

#SaveCarlasLife

docs.google.com/document/d/1Ny…

On X: Dr says someone should at least try graded exercise...

Every #pwme I know tried to maintain their life, I volunteered, gardened, shopped, walked my dog, studied, self employed. I'd say it was very graded exercise... Not at gym.

I got sicker and sicker and sicker.

Falsely psychologising patients with Severe #MyalgicEncephalomyelitis has to stop.

“Carla has repeatedly lost consciousness & is now having seizure-like events. The hospital have been ignoring these for five days”

This is NOT care.

#SaveCarlasLife
#ExposeMENow
#MedTwitter

A reminder, or heads up, to people with #LongCovid who experience PEM (which is c. 50% or so)...

The Long Covid research field as a whole is *not* currently representing you properly! Only 0.44% of papers mentioning LC last year also mentioned PEM (red)

The fastest way to…

Feel a bit better
Get so excited about life I can’t sleep
Feel worse

#mecfs #SevereMECFS #pwME #LongCovid

Dear #pwme and members of #mecfs community! Our fellow patient Nevra Liz is in a dire situation and her multiple medical issues are urgent. A community advocate in the past herself, she now needs our support to get through her darkest time. Please continue reading below 1/n

Alt text for the ME/CFS severity scale I wrote. Thank you Over a Century & That's the Best Excuse You Have? for writing the alt text. Brilliant. 🙏

Note that I wrote this scale, it is was then edited and a graphic designer made this graphic and a team of researchers conducted the accompanying study.

New Severity Scale for ME/CFS

I wrote this new severity scale for ME/CFS about 2 years ago.  I really wanted to express how severe the illness can actually get which is not at all reflected in our current mild-moderate-severe-v.severe scale.  And I wanted to make it more…

Ppl without LC MECFS explaining suicide of ppl with severe MECFS LC are about other things

There are likely contributors but
elle carnitine 🍉 Whitney Dafoe and I have all talked extensively about suicidality in this community

Please don’t underplay it, it’s not your community

Etta Loveday A reminder from Whitney Dafoe of what is needed - a PEJ tube - and that this is perfectly doable as he has one himself:

whitneydafoe.com/mecfs/?post=do…