Fiction: You can't have MCAS unless you have allergies Fact: MCAS can occur in individuals with or without allergies Contrary to common misconceptions, you don’t need to have allergies to have MCAS.

"In 2004, we documented that at least half of annual household income was lost when #MECFS took a person’s career. We are seeing history repeat itself with #LongCOVID, affecting hundreds of thousands more with devasting human & economic impact," said S. Vernon, PhD & Research Dir

New collaborative paper out! The paper looks at rates of #LongCovid in those with long-term disabilities. Of people who got COVID, 40.6% of people with pre-existing disabilities got Long Covid, vs 18.9% of people without pre-existing disabilities. ajph.aphapublications.org/doi/10.2105/AJ… 1/

Prévisions de COVID pour le Canada : 31 AOÛ-13 SEP, 2024 QUÉBEC TRÈS ÉLEVÉ (stable) Infections pendant cette période : 146 300-167 000 Environ 1 personne sur 56 est infectée Par rapport au point le plus bas de la pandémie au Canada : -Infections ~14X🔺 -COVID longue ~15X🔺

400 million reasons to care about #LongCovid ICYMI: our review on #LongCovid in Nature Medicine Long Covid has affected at least 400 million people worldwide at a cost of $1 trillion per year. #LongCovid is a defining health crisis of our time! nature.com/articles/s4159…

✨Starts next week! ✨ Nearly 6M children in the U.S. are affected by #LongCovid, up to 1 in 5 kids experiencing symptoms. 🔗 Learn more: hubs.ly/Q02NjgM90 #LongCOVIDAwareness #PediatricLongCOVID #LongCovidFamilies

Sending all our love to all who are grieving the loss of Sammy, a person with #SevereME. She was a powerful communicator. She was kind & creative. She will be missed more than words can say. Please take care of yourself. Drop in a support group or contact a helpline if needed.

Sometimes just being conscious is too much energy expenditure when #MECFS patients are in a crash and often too much for #SevereMECFS patients period. This is why severe patients sometimes cant get better, because simply being alive uses more energy than they can sustain and

Check out our new flier that you can print & take to your clinician sharing the ME/CFS continuing medical education created by #MEAction & Mayo Rochester Clinic staff. We also offer email language if you prefer to share that way! ow.ly/oCrF50TfVub #TeachMETreatME #pwME

As an ME community, two terms we need to define better are ‘recovery’ and ‘remission’. It’s incredibly frustrating to hear people say they’re recovered or in remission…and then see or hear how sick they still are. That’s not a remission or recovery. It’s an improvement.

Welcome to our first #MedEdMonday! We are excited to introduce the 1st video in a 4-part series focusing on post-exertional malaise & pacing created by Patient-Led Research Collaborative & #MEAction Network. Our 1st video features Dr. Brayden Yellman from Bateman Horne Center. youtu.be/cGQFGgb_PtA #pwME #pwLC

🧵 New 24-minute video from #MEAction Network & Patient-Led Research Collaborative "Understanding Post-Exertional Malaise - Dr Brayden Yellman" youtube.com/watch?v=cGQFGg… I thought this was very good. Great to have a doctor who gets it. #LongCovid #MEcfs #CFS #PwME #PostExertionalMalaise 1/

It’s why online communities are vital to our survival - because patients sharing stories help others learn how to manage their conditions. Many learn more from other patients than they will ever learn from HCWs. Patients ARE the experts in how to cope with chronic illness /4

🎥 We are excited to share that the recordings from the 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID are now available! 🌍 #mecfs #LongCOVID #pwME #pwLC Watch recordings from OMF-associated researchers ⬇️ ow.ly/wSsc50TmZOl

We talk about orthostatic intolerance like oh yeah another shitty ME symptom, but really it's quite an absurd, life altering symptom. Should be high on everyone's 'Things I never want to get' list.

The impact of ME/CFS versus funding Illnesses listed on the bottom if you can't see it Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS. From Jeffrey Tran's video (warning: a bit noisy) tiktok.com/@poisedleft/vi… #MEcfs #CFS #PwME

Looking for something new to read this weekend? Check out the new anthology: Pillow Writers Anthology, Issue 1: Near- Life Experiences! It has a little bit of everything! Learn more & order now: meaction.net/2024/09/18/pil… All proceeds go to #MEAction! #pwME #MECFS #LongCovid

This is why carefully designing research protocols with knowledgeable patient partners is vital. We MUST separate ME - from patients with the symptom of ‘chronic fatigue’ - if we ever hope to improve the accuracy and efficacy of research findings and treatment options for ME.

People with #SevereME face similar barriers to care.

🚨 Une personne sur 35 au Québec a la COVID-19 en ce moment! Les infections peuvent empirer l'état des #PAEM et peuvent déclencher l'#EncephalomyeliteMyalgique. 💝 L'AQEM offre à ses membres des masques N95 et des tests rapides gratuits, postés à domicile gratuitement.