8 AUG, 2024 #SevereMEDay My life in this nursing-home bed: This is #SevereME. instagram.com/p/C-bJh93TFWk/… #MEAction Network Solve ME/CFS Initiative Mutual Aid for ME

Thank you so much to #MEAction Network for including me in the #SevereME Artists Project this year, #SevereMEDay, 2024.

Are you a paramedic? Would you like to learn more about Addison's, adrenal insufficiency and adrenal crises? 🚑 Join our online training sessions: 📅 Tues 24 Sept 2024, 1 - 2pm 📅 Tues 12 Nov 2024, 1 - 2pm 📅 Tues 28 Jan 2025, 1 - 2pm Find out more 👇addisonsdisease.org.uk/adshg-paramedi…

I’ve had a number of people ask me how to avoid Long COVID. I tell them the best way is to avoid COVID (and to avoid repeat infections). 99% say “that’s too hard” and make ZERO changes. If taking precautions is too hard - you’re going to HATE living with Long Covid.

A 5-minute task which could save your life 🚨 When was the last time you checked your kit? 💉 It's essential to make sure your hydrocortisone injection kit has all the elements you need so you're prepared should you become unwell. addisonsdisease.org.uk/the-emergency-… #CheckYourKit |🧵1 of 3

“You’re on disability? You’re so lucky! I wish I didn’t have to work.” Do people not understand how sick you need to be to GET disability? It’s not a vacation. It’s not fun. It’s heartbreaking to lose your health & independence. To have society treat you as disposable.

SEPT 2024 #PainAwarenessMonth About #pain & #Opioid #PainManagement on this, last day of #PainAwareness Month: instagram.com/p/DAii_6wJXRS/… #ChronicPain #Opioids #PainMedication #EDS #EhlersDanlosSyndrome #EhlersDanlos The Ehlers-Danlos Society U.S. Pain Foundation

If you have #AddisonsDisease or #AdrenalInsufficiency, this is an outstanding document to add to your medical binder & e-kit. I'm adding it to mine. And today, please, let us all in the US, and globally, remember to updose for grief/strong emotions, before crisis symptoms.

Please, I want to ask Addison's Disease Self-Help Group (ADSHG) , The National Adrenal Diseases Foundation , National Organization for Rare Disorders (NORD) , and all orgs w reach to the rare-disease community, to remind all ppl w #AddisonsDisease or #AdrenalInsufficiency to updose our steroids for grief/strong emotions: Sick-day rules apply.🙏🏼💙

Many individuals with #POTS are often misdiagnosed as having anxiety or panic disorder. Read the study finding that POTS patients are no more likely to have anxiety than the general population: pmc.ncbi.nlm.nih.gov/articles/PMC27…

So am I allowed to say "your body my choice," to my fetus because it seems like that's what y'all are getting at.

Is everyone ready for #RFK to "Go wild" on #women's #healthcare? 🤢🤮😰 #WomensHealth #WomensRightsAreHumanRights

4 days ago my 6yo attended a field trip to a local science museum. A parent chaperone repeatedly "pressured and begged" him to remove his mask for part of the experiment. This morning I was awake at 4am cleaning up his vomit. 🛑Stop bullying children!

Please, STOP BUYING EGGS. Problem solved. #GoVegan: #FactoryFarming, incl #eggs, is violent, cruel. Male chicks are ground alive. Hens' beaks are burned off, w/ no anesthesia & no infection care. #AnimalAgriculture is the #1 cause of the #ClimateCrisis. Please, be #vegan.

I'm moving to #BlueskySocial: @rarediseasepatient.bsky.social 💙 I'm leaving my Twitter accounts here as archives & resources. My main medical journal & social-media home is still @rarediseasepatient on IG. NB: Please visit my posts today w/ letters to Senators RE RFK HHS.