I got TPN and lived. Maeve was denied TPN and died. #MECFS did not kill Maeve. Neglect, ignorance, prejudice, arrogance and broad systemic failure killed Maeve. #MaeveInquest #severemecfsawarenessday Excerpts from my post below ⬇️ New post on my blog: whitneydafoe.com/mecfs/?post=dr…

Solve M.E. (Solve ME/CFS Initiative) and Bateman Horne Center are pleased to announce a four-part webinar series, Severe ME/CFS: Care, Rights, and Research. Topics will include caregiving, legal, medical, and research. ➡️Oct 2024-Jan 2025. Stay tuned for details. #SevereME #caregiving

OMF's StudyME Registry has over 9,800 Participants! 🎉 Will you help us reach 10,000? Help accelerate research for #MECFS, #LongCOVID, and related diseases through research participation. Join OMF's StudyME Registry 👉 omf.ngo/studyme/. #mecfs #LongCOVID #pwME #pwLC

Do YOU want to help speed up the research process??!! Of course, we do!! My hope lies with Open Medicine Foundation to find answers/treatments...a cure!! 💙My Dreams-Come-True-Team!! 💙 Let's hit 🔟,0⃣0⃣0⃣ by day's end!! #pwME #pwLC #EndMECFS

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"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

Access the article here: bit.ly/4dEnRyX

#mecfs24 Working Group on Molecular Basis of ME/CFS starting now! Sept 3-6. Lots of great speakers. It’s confidential so they can present unpublished data. I will tweet agenda

Ron Davis’s Stanford Symposium

Excited for this new launch! Awesome tshirts created by a person with #SevereME #LongCovid with proceeds going to Open Medicine Foundation & PolyBio ? Yes, please! Been riding symptoms for so long it’s about time we got ourselves some surf wear 🏄🏻‍♀️. #MECFS #MyalgicEncephalomyelitis

#mecfs24 starting off today with Jonas Bergquist talking about metabolites and tryptophan metabolism using blood based analysis and the great new FUNCAP questionnaire that focuses on PEM.

#MECFS24 Chris Armstrong talking about cell metabolism in me/cfs

#MECFS24. Chris Armstrong paid tribute to Sammy at the end of his talk. 💙💙💙💙

#MECFS24. Chris Armstrong presented this brief history of the disease. I got his permission to share this slide

❗️Content Warning: Sharing the Loss of a Community Member ❗️

#mecfs24 David Systrom on the LIFT Trial of Mestinon and LDN