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Updated my GoFundMe, please share and comment, need more donations www.gofundme.com/f/help-emily... Highlights: may need more neurosurgery trips and surgeries due to vein issues, stage 3 gastroparesis aka gastric failure, stage dyssynergic defecation, more severe sleep data confirmed

Donate to We've got your back! Get Emily spine and brain care, organized by Jess Smolinski*PLEASE SHARE even if you can't donate* Hello, everyone! This f… Jess Smolinski needs your support for We've got your back! Get Emily spine and brain carewww.gofundme.com

Never ceases to amaze how Severe/Very Severe ME/Long Covid patients use our very little energy to be clear and public about what is needed to help us survive awful situations yet others not in survival situations infantilize or criticize us for trying to fight harms jeapordizing us further

💥 Don’t sleep on this excellent event! Happening in 8 hours, register now ⬇️

Happening now! You won’t want to miss this webinar

I’m a second author on this, please sign and share this!

Signed! 🔥 Please share and sign this ethics complaint #LongCovid #MECFS #pwME

Nuclear medicine: with any luck, you’ll get out early and won’t have to stay the full 4 hours! Me: I regret to inform you I’ll be staying the full 4 hours *4 hours later* NucMed: 43% v >90%

The way I kept delaying retesting for infections Monday after Monday, crossing my fingers and hoping the extra learning time with treatments will make my immune system at least get passing grade

C'mon, Do Something Stickman MemeAlt: C'mon, Do Something Stickman Meme of a black and white cartoon man prodding the ground in futility with a stickstatic.klipy.com

Martha Wells writing a character’s inner monologue using parentheses inside of parentheses, as one does 💅🏼

John Ferman, who founded of @cppedsa.bsky.social in 2011, passed away November 2025 EDS patient and filmmaker @karinasturm.bsky.social made this documentary short to honor John’s legacy of advocacy (in honor of his first wife, who passed away due to #EDS complications): youtu.be/vLar9uhx0NE?...

Where People Understand (Full Film, HD)YouTube video by Karina Sturmyoutu.be

If you have #POTS and/or other types of dysautonomia and you take Corlanor aka Ivabradine, there’s a recall, check your pills: www.eatingwell.com/heart-kidney...

Heart and Kidney Medications Recalled Nationwide—Over 900,000 Bottles AffectedHeart and kidney medications are being recalled nationwide due to a potential contamination. Here’s what you need to know.www.eatingwell.com