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  Exposure therapy for people with food allergies and food intolerances has killed and nearly killed so many kids and adults Anyone proposing exposure therapy as a journalist, researcher, clinician is oppositional to ethical and appropriate medical expertise in these fields

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  “Ok body the specialist diagnosed me with a new chronic infection that’s been raging and misdiagnosed for years, let’s get these treatments started!” #MCAS: I hear you but I’m going to respond with severe contact dermatitis because what if YOU are the chronic infection trying to fool me?

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  I’m either too sick to post or too sick to do much besides post, that is part of dynamic disabilities, my existence or non-existence online is not evidence of wellness and usually evidence of worse sympyoms, thank you ✨

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  If you’re a “journalist” criticizing my GFM, you could bother to read it *before* you claim it covers care for only one doctor, as it covers years of several medical trips and care across dozens of specialists related to brain/spine issues — but I know only real journalists would

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  Basic journalism rule: Don’t say anything in private you don’t want made public Defamation per se isn’t protected by the First Amendment

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  John Ferman, who founded of Chronic Pain Partners/EDS Awareness in 2011, passed away November 2025 EDS patient and filmmaker @karinasturm made this documentary short to honor John’s legacy of advocacy (in honor of his first wife, who passed away due to #EDS complications): https://youtu.be/vLar9uhx0NE 1/2

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

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  Updated my GoFundMe, please share and comment, need more donations https://www.gofundme.com/f/help-emily-get-medical-care 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

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  It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation) It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful My neurosurgery follow-up is soon, please donate and share: https://www.gofundme.com/f/help-emily-get-medical-care

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  If you have #POTS and/or other types of dysautonomia and you take Corlanor aka Ivabradine, there’s a recall, check your pills: https://www.eatingwell.com/heart-kidney-medication-recalled-nationwide-12007424

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  Long Covid clinics state by state, updated as of April 2025 This is a spreadsheet shared by journalist Emma Smith and created by a Long Covid org, she recently wrote a Sick Times article about many Long Covid clinics closing and stranding patients Some of the clinics on this spreadsheet have since closed, but I wanted to share this should it be useful for people here to contact listed clinics in their state and surrounding states for care https://docs.google.com/spreadsheets/u/0/d/1ODmvKyCdMU...

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  In the hospital for an extra day having a very hard time, if anyone could please share my neurosurgery fundraiser even if you can’t donate so more people see it, appreciate you, thank you Will update when I know more https://www.gofundme.com/f/help-emily-get-medical-care

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  Before another well-meaning, good doctor says “there just isn’t that much evidence tying Covid to this condition yet” it would be great if they checked the Covid lit library to see if 1,000+ research papers of such evidence exists Misinfo helps no one https://www.ncbi.nlm.nih.gov/research/coronavirus/

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  If you missed the live link for Alice Wong’s Celebration of Life reception today, you can watch the recording here, thanks to the San Francisco Disability Culture Center: https://www.youtube.com/live/i2dj4WABIeY?si=ScgiSTbh_9jlJYGT