@cortjohnson.bsky.social
Long (long) time person with ME/CFS/FM, Translator ME/CFS/ fibromyalgia/long COVID/POTS, etc. research and advocate. Creator of Health Rising and Phoenix Rising. Roaming the western US since 2012
@vickyvdtogt.bsky.social
Community organizer | Researcher | Advocate | Director of development at Research-Aid Networks 🌐 Author of The Long Covid Symptom Diary, now available in EN, NL & ES! - www.ddxpublishing.com
@turnoftheshrew.bsky.social
Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.
@dysautonomia.bsky.social
We are the leading non-profit advocating for over 70M people around the world living with autonomic nervous system disorders. Research, Clinician Education, Patient Empowerment, Public Awareness & Advocacy is what we do. DysautonomiaInternational.org
@midcatecrisis.bsky.social
Chronically ill, autistic, demi/greyace (mostly in bed, mostly homebound) ME/CFS and probable LC 😷😷😷 Interests: climate, COVID, disability justice, nature, parenting, socialism Ltd cog energy, don't tend to follow back. Toronto, Canada She/her/they
@emmiskyten.bsky.social
Sustainability science studies on hold because of POTS + Long covid / suspected ME. Previously interesting, now mostly into resting. Here to connect with other sick people and for science stuff.
@meactmaryland.bsky.social
#MEActionMaryland Maryland chapter of the #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in MD/DMV https://youtube.com/@meactmaryland https://linktr.ee/meactmd
@jannamoen.bsky.social
Postdoctoral scientist studying the neurobiology of #longCOVID in the Iwasaki lab @ Yale. Patient, scientist, advocate. | ♿🏳️🌈 | she/her My long COVID research newsletter: lcbreakdown.substack.com
@mareksjf.bsky.social
• Scientist ‖ PhD mathematical physics (not MD) ‖ Dr. rer. nat. • Interests: Medicine ‖ History ‖ Global Politics • #MECFS ➡️ http://mecfs.de/was-ist-me • EN ‖ PL ‖ DE
@melindaiscomplex.bsky.social
My body has given up but I haven't... ME/CFS Patient Leader & Complex-Chronic Disease Advocate (on hiatus). Co-founder #MEAction Maryland. Bed-tethered disabled by severe ME & LC & comorbids. Orioles/Ravens/Caps fan. She/her
@longcovidfam.bsky.social
A US non-profit supporting children with Long Covid and their families.
@fvrhijn.bsky.social
MD | rheumatology resident #ME due to #LongCovid Nonbinary 🌈🌈🌈🌈 | views are mine.
@workwellfoundation.bsky.social
#Nonprofit clinical #research providing 2-day #CPET #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses. workwellfoundation.org
@guusontheinternet.bsky.social
Creative turned activist #NietHersteld - Long Covid since jan’21 ♿️ - posts with brain fog, so pls bear with me - eager to learn - posts in 🇬🇧 & 🇳🇱
@lizworthey.bsky.social
#AssociateProf #CompBio #Omics #WomenInScience #LGBTQ+Ally #Scottish #PrecisionMedicine #HealthCare #MDx #ME/CFS #RareDisease #Informatics #SciFiNerd #LongCovidAffected sites.uab.edu/cgds/ she/her
@mecfssd.bsky.social
ME/CFS San Diego, a 501c3 public charity, is working locally to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to help educate healthcare workers and researchers, to increase access and support for ME/CFS patients.
@shellchat.bsky.social
Reformed journo/editor, now working in health comms. Fighter of injustice in all its forms. Advocate for better research & support for ppl w uninvited friends POTS, ME/CFS, MCAS, LC, EDS, SjD, AnkSp plus other misunderstood AI conditions.
@yogafogie.bsky.social
DMV native. COVID long hauler. Patient-Led Research Collaborative.
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024
@julialmv.bsky.social
Long COVID patient-researcher @ Scripps Research & Patient-Led Research Collaborative
@nelehelena.bsky.social
I'll "tweet" here about the things I don't like if the other app goes down
@katieklocksin.bsky.social
One of the #MillionsMissing with #LongCovid #MECFS // Once a radio and podcast producer, always a Transom alum 😷 Long covid is common 😷
@lonniemarcumpt.bsky.social
Wife/Mother, Science Writer, PT, HC Admin, Disease Detective, Voracious Reader, Connoisseur of Coffee, Graduate CSUN, Olive Farmer, HHS 2019-2022 Tick-Borne Disease Working Group, CDC Fdn ICUE patient advocate.
@cuboidalhug.bsky.social
@eyebrowse.bsky.social
@heyjanae.bsky.social
she/her | ♒️ | copywriter & 🩵 @ctpublic.bsky.social social media editor 🩵 Anime & Cartoons | 日本語OK | Long Covid Mar 2022 | I complain often ✨🌺🧡 #CovidCompetent
@rachelriggs.bsky.social
Author of IN GOOD HEALTH: Uncomplicated, Allergen-Aware Recipes For a Nourished Life instagram.com/the.rachel.riggs #EDS #MECFS #Food #paleo #glutenfree #dairyfree
@kerriemccure.bsky.social
Writer / editor / photographer / full-time sick person. Cinema lover, cat-and-dog person, mostly horizontal. 🍉 #MECFS #hEDS #HSD #POTS #MCAS #CCI #CSFleak
@wanderingkayli.bsky.social
@wandering on Instagram ✍🏻 Disabled with Long Covid 40+ months Long COVID Researcher @sfu-fhs.bsky.social Master’s Student @sfucmns.bsky.social writing on biopolitics & Long COVID https://beacons.ai/wanderingkayli
@carolbarrel.bsky.social
I enjoy cats and bicycles. I much less enjoy my chronic illnesses. #pwME
@steigerecon.bsky.social
Assistant professor of economics on medical leave from Northeastern University; macroeconomics, growth and development. Severely ill with MCAS/POTS/EDS/ME. Catholic convert who loves the balance of faith and reason. Native Oregonian.
@longcovidadvoc.com
A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... 💙📚Home to the #pedanticzebra book club. https://www.longcovidadvoc.com/ 🛍️ https://longcovidadvoc.shop/
@dualiejulie.bsky.social
(She/her) In LongCOVID/M.E. hell looking for a way out! First wave Longhauler. Former engineering student. Trying to get my personality back from the disease. Very cute dog.
@shelleyjules.bsky.social
MECFS from the long before times but not diagnosed for 23 years…LC since 2020 - interested in advancing patient led research (Renegade Research & Remission Biome) & all avenues that lead to effective treatments for everyone. She/her. Love is my language. 💖
@millionsmissingfr.bsky.social
Asso de patient·e·s. Pour la prise en charge de l'encéphalomyélite myalgique #EM en France et le développement de la recherche. Entraide & soutien 🤝 www.millionsmissing.fr. #MECFS #EMSFC #pwME #paEM #MillionsMissing . Member of the World ME Alliance.
@irishmecfsassoc.bsky.social
Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association NB: Posts should not be considered advice Registered Charity Number 20100254 CHY 22039 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also
@vashetc.bsky.social
ph.d. perpetually horizontal. writer, researcher. ✍🏽 v ash e t c [dot] com — vashetc.com banner: lake & mntn @ sunset. There’s a silhouette of a family in the water
@riemerville.bsky.social
Salty | #LongCovid,#POTS & #ME | Books, Music, Food, Art #ATXRE | Excuse my typos We are living in a choose-your-own dystopian novel
@rejayjay.bsky.social
Silly Chicago girl, marketing professional, long covid patient. No DMs unless you donate to the mutual aid I repost. 💜
@francesryan.bsky.social
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled. E: [email protected]
@lguterman.bsky.social
Science journalist with long covid. Former staff at Science Magazine, Science News, C&EN, Chronicle of Higher Education. Now full-time patient.
@ravenscimaven.bsky.social
Raven Baxter, Ph.D. -- Molecular biologist helping people + companies globally learn + share science, for a more scientifically engaged world. iloveraven.com
@mayalongcovid.bsky.social
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
@johnvsjonvsme.bsky.social
#JohnVsJonVsME campaign to get John Oliver or Jon Stewart to bring the awful history of #MyalgicEncephelomyelitis #GreatestMEdicalScandal to light JohnVsJon.com
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.