Chloé de Canson @chloedecanson.bsky.social Formerly assistant professor of philosophy • bedbound since 2022 with severe myalgic encephalomyelitis, a type of long COVID • philosophy of science, epistemology incl. social, and their history • chloedecanson.net • 🇵🇸
Dr Rae Duncan @sunny-rae1.bsky.social Consultant Cardiologist, also treating and researching Long Covid. Long Covid Advisory Team @ WHN, #TeamClots, Medical Champion @ Long Covid Kids. Prevention is better than cure. Views my own and not medical advice x 
Bateman Horne Center @batemanhornecenter.bsky.social The Bateman Horne Center is a medical center of excellence for people with ME/CFS, Long COVID, fibromyalgia, post-viral illness, and comorbid conditions.
Carmen Scheibenbogen @scheibenbogen.bsky.social Immunologist and ME/CFS researcher @Charité
https://cfc.charite.de/
Rivka Solomon @rivkabluesky.bsky.social • Advocate/Organizer: Immune-Associated and Infection-Associated Chronic Illnesses, ME/CFS, Long COVID, Lyme, disability and women
• Writer: Washington Post, Marie Claire magazine, NPR, Ms. magazine, Newsweek
• Playwright: Dozens of productions
David Kaufman @kaufmanmd.bsky.social Physician/Internist focused on complex illness including Long Covid, ME/CFS, dysautonomia/POTS, MCAS, connective tissue disorder, and of course SIBO/Leaky Gut.
And sadly, the ongoing coup. 
Liz Nevra A. @nlizaki.bsky.social #MEActionNetwork health activist. Patient, project manager, translator & polyglot. ✊🏾 #Stoic #WoC @NLizaki & @SaveLizNevra on Twitter. #MyalgicEncephalomyelitis since 6. 28 now. #PMDD #hEDS #POTS #MCAS #LongCovid
Liz Burlingame @lizmeactga.bsky.social Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.
ThereForME @thereforme.bsky.social Working to improve support, understanding & quality of life for people affected by ME & related conditions through evidence, awareness & advocacy. www.thereforme.uk
David Tuller @davetuller1.bsky.social Senior Fellow in Public Health and Journalism, Center for Global Public Health at the University of California, Berkeley. I blog at Virology Blog (virology.ws). My academic position is largely funded by donations from patients. davetuller@berkeley.edu
PolyBio Research Foundation @polybiorf.bsky.social 501(c)3 transforming how #LongCovid, #ME/CFS & Lyme+ are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
dSavannah @dsavannah.bsky.social ~ Life stolen by MEcfs-hEDS-fibro-POTS-&c; FT sick since 12/2014
~ #LiveInBedButIAintDead
~ When brain & body behave: Chronic Illness Advocate
~ Discworldian, Browncoat
~🐱(x3)🐢💐🌻🌷📸📚🖼️
~ she / her ~ Love Is Love ❤️💚🧡💛🩵💙💜🤎🖤🩶🤍🩷
https://linktr.ee/thedsavannah
Karyn Bishof @kbishof.bsky.social 🔵 Founder & Pres. @C19LAP https://www.longhauler-advocacy.org
🔵 Pw/ #LongCOVID, #IACCS, #Disability
🔵 Fmr. Firefighter/Paramedic
🔵 Fmr. Educator, Coach, & Dir. of Athletics
🔵 B.S. (ex science & health promotion)
🔵 #StillCOVIDING #COVIDConscious #Mask
Prof. Akiko Iwasaki @virusesimmunity.bsky.social We study antiviral immunity and viral disease pathogenesis. We are developing mucosal vaccine strategies to prevent infection and transmission. #COVID19 #longCOVID #vaccines - M @marydimmock.bsky.social @marydimmock.bsky.social US ME patient advocate. Mother of a son and his wife who have ME and Long COVID. My other focus is on US politics and what's coming
COVID-19 Longhauler Advocacy Project @c19lap.bsky.social COVID-19 Longhauler Advocacy Project is a patient-led #LongCOVID 501(c)(3).
Visit longhauler-advocacy.org/lcamonth26 to learn more and take action this #LongCOVIDAwarenessMonth.
#LongCOVIDAwareness #OneInfectionAway
Wilhelmina Jenkins @wilhelminaj.bsky.social Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
Chris Ponting @cgatist.bsky.social Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
Maya Lindemann @mayalongcovid.bsky.social RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
Ziyad Al-Aly MD @zalaly.bsky.social Physician | Scientist | working on Long Covid
Lila Guterman @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.
Riemerville @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
Regina M @rejayjay.bsky.social Silly Chicago girl, marketing professional, long covid patient. No DMs unless you donate to the mutual aid I repost. 💜
Irish ME/CFS Association @irishmecfsassoc.bsky.social Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association-for Information, Support & Research
NB: Posts ≠ advice.
Registered Charity RCN 20100254.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also
Millions Missing France @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
🔴 Membre de World ME Alliance.
Julie for M.E./LC treatment 😷 @dualiejulie.bsky.social In LongCOVID/M.E. hell looking for a way out! First wave Longhauler.
Trying to get my personality back from the disease.
Very cute dog.
Long Covid Advocacy @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 #cripademia book club.
https://www.longcovidadvoc.com/
🛍️ https://longcovidadvoc.shop/
Anna Kerr @annajk.bsky.social ME patient, art appreciator, advocate, mother.
Katie Klocksin, by the wayside @katieklocksin.bsky.social One of the #MillionsMissing with #LongCovid #MECFS JohnVsJon.com // Once a radio and podcast producer, always a Transom alum // native plants
🌻🪻🌼
Julia MV @julialmv.bsky.social Long COVID patient-researcher
@ Scripps Research & Patient-Led Research Collaborative
Brian Fog @uselesspriest.bsky.social Long COVID, mild, since Apr 2022
ME / Long COVID diagnosed May 2024
Michael Sieverts @yogafogie.bsky.social DMV native. COVID long hauler. Patient-Led Research Collaborative.
Shelley @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.
ME/CFS San Diego @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.
Guus @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 🇬🇧 & 🇳🇱
Josh @properchels34.bsky.social Long Covid, ME/CFS, POTS…. For now 
Fen van Rhijn, MD @fvrhijn.bsky.social MD | rheumatology resident
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine. 
Workwell Foundation @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
Long Covid Families @longcovidfam.bsky.social We are families working inside research, public health, and policy. Turning lived experience into system change for children. U.S. based.
Emmi Skyten @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 @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
Vicky van der Togt @vickyvdtogt.bsky.social Facilitator | Researcher | Advocate
Alexis M. 🎃 @turnoftheshrew.bsky.social begrudgingly online for chronic illness research & disability justice community. living meaningfully & unapologetically as a hermit against my will.
Dysautonomia International @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
Cort Johnson @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
Long Covid Kids @longcovidkids.bsky.social The charity supporting & advocating for children & young people with Long Covid & overlapping illness.
#LongCovidKids #LongCovid #PaediatricLongCovid
#LongCovidAwareness #MECFS
Daniel Lewis @daniellewis.bsky.social My #LongCovid is mainly #PEM + #POTS + #MCAS
Ben H @benhmecfs.bsky.social ME/CFS patient advocate, Open Medicine Foundation science correspondent. Bedbound. Former: exercise physiology, biochemist in training, athlete-Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.
Olenka Sayko @osayko.bsky.social Theater/film/music/book lover. Lipstick hoarder. Ukrainian-American. Life on pause due to #LongCOVID of the #MECFS / #POTS / #MCAS variety. Left-ish libertarian-ish. Suffering NY Rangers fan. Audiobook connoisseuse.
Ezra S @ezra.zone creator of longcovidstudies.net, member of the Patient-Led Research Collaborative, and freelancer.
Tess Falor, Ph.D. @tessfalor.bsky.social Founder - Renegade Research
#MECFS #LongCovid
RemissionBiome MECFS/LongCovid Patient-led Research Project @remissionbiome.bsky.social Project run by #RenegadeResearch @renegaderesearch.bsky.social a non-profit 501c3 decentralized org pioneering patient/caregiver led research focused on #MECFS & #LongCovid • Renegade-Research.org • RemissionBiome.org 💙 Donate now ▶️ tinyurl.com/44azdsxm
Wes Ely, MD, MPH @weselymd.bsky.social Husband & Dad. ICU Doc. Vanderbilt. @CIBScenter studies Covid & Long Covid, ICU Survivorship, Dementia, Delirium, PICS. Fighting misinformation. Posts my own. Still learning.
Michal Caspi Tal, PhD @immunofever.bsky.social Immunoengineer at MIT BE developing predictive diagnostics. Captivated by #inflammation, #SexDifferences #Lyme, #COVID, #IACI, #IACC and #onehealth. Mom of 2. prev/ PhD in Immunology @Yale; PostDoc @Stanford
https://talresearchgroup.mit.edu/
Merve Tepe, PhD @mervetepephd.bsky.social PhD MICROBIOLOGIST
AMR, Biofilms, Phage Therapy, Drug Design and some other similar topics 🤫🔜
@remissionbiome.bsky.social team
@renegaderesearch.bsky.social volunteer
DEFEND SCIENCE, RESIST IGNORANCE 🚫
#SonKale06
Ankara
Sabrina Poirier @sabrinapoirier.bsky.social #CommunityEngagement Expert. Life sidelined by #MECFS #MCAS #POTS #Fibro #Gastroparesis +
#MECFS & #LongCovid #ResearchPartner & #Advocate • Chair of #MedicalEducation Group • #PwME #Disability
(Unceded) #Canada
https://linktr.ee/sabrinapoiriercanada
Michael Stingl @neurostingl.bsky.social Facharzt für Neurologie
ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
Post-Viral Trials @postviraltrials.bsky.social News and information about interventional trials for Long Covid, ME/CFS, POTS, and other post-viral illnesses. Message or tag me if you’re in a trial or otherwise have information to share.
steffi @mecfshawaii.bsky.social Patient Advocate / pwLC / Caregiver to pwME 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
Yr buskined mistress & yr warrior love @rhymeswithvery.bsky.social ACT I: Books, bookstores, publishing, the Bay Area, my dog, trees, rocks, crows, large bodies of water. ACT II: #FcktheNIH, post-vaccine syndrome, #ME, other new health disasters, good people, disability justice. ACT III: 
Megan Hooker @meg01.bsky.social Lover of the smell of rain in the desert, free flowing rivers, a good monsoon storm and veggie gardens. Perpetual student of Feldenkrais and Organic Intelligence. Former river advocate on a life detour from ME/CFS. 
Elizabeth Milo @akaemilo.bsky.social Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease
Animals deserve better.
Missing Ireland.
Writer at ElizabethMilo.com
#MaskUp
Caroline Elizabeth Christian @carolinechristian.bsky.social Professor #ssu, writer, mother disabled by #hEDS #MECFS #LC; I write a blog called Frozen in Amber about the science of and lived experience w/ #hEDS #MECFS #LC | chronicallycaroline.com
DanielleMors @daniellemors.bsky.social Audiobook Narrator. Writer. Singing songs and smirking. She/her. hEDS, POTS, ME/CFS
elle carnitine 🪳 @ellecarnitine.bsky.social immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
Karen Lubell @karenlubell.bsky.social Caregiver. #mespine #cci #eds #mecfs
Isabel Ramirez-Burnett @isabelrb.bsky.social CEO | Renegade Research | Project Director of Remission Biome
NBC-HWC, AIP-C
@remissionbiome.bsky.social
Monica Verduzco-Gutierrez @mvgutierrezmd.bsky.social Professor & Chair of Rehab Med in SATX | Mom, runner, #LatinasInMedicine, #Physiatry, #LongCOVID
Angela MV (she.he.they) @angelamswinca.bsky.social 🦠😷♿️#LongCovid disabled | 📢 fmr prez Body Politic | 🏠LAX | ⚖️health justice | ✊🏽✊🏾✊🏿racial justice
alt text profile pic: tan skinned person in a tan KN95 mask and suit, dark wavy hair with short bangs
Brian Vastag @brianvastag.sciencemastodon.com.ap.brid.gy Occasional science reporter at The Washington Post and elsewhere. Disabled by complex chronic post-viral illness. Living on #Kauai #Hawaii. Sometimes […]
🌉 bridged from https://sciencemastodon.com/@brianvastag on the fediverse by https://fed.brid.gy/
Long COVID Justice @longcovidjustice.org We are leading grassroots efforts to confront the Long COVID crisis, while centering racial, social, economic & disability justice. Our work is done by and for chronically ill & disabled people, our families and communities. linktr.ee/longcovidjustice
María Richardson @diatoma.bsky.social Ella/she/her. I write, I read, I draw plants. Chronically ill en la Ciudad de México. #ME #MECFS #POTS #LongCovid
betsy ladyzhets 😷 @betsyladyzhets.bsky.social editor/co-founder @thesicktimes.org | journalist covering Long COVID & related crises | she/her/🏳️🌈
email: betsy@thesicktimes.org | signal: betsyladyzhets.25 | https://thesicktimes.org/
Whitney is Wicked @itswhitneywitch.bsky.social Disability Justice
Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more
Ambulatory wheelchair user
Cozy gamer, lazy gardener, hopeful baker
Wendy Kloiber @wendykloiber.bsky.social So did the divine right of kings. Long covid class of March 2020, the kind with ME. Would like one more tattoo, minimum. She/her. Ashland, WI —> MSP.
Long COVID Canada - Collaborative @longcovidcan-co.bsky.social We provide support, resources & reliable science-based information to patients, parents or caregivers of those suffering from Long Covid in Canada in our FB support group. Engaging w our community& building collaborations. Because we are STRONGER TOGETHER.
Billy Hanlon @bhanlon15.bsky.social ME/CFS | Long COVID | IACC
Richelle Sepulveda @richellesepulveda.bsky.social Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
Julia Métraux @juliametraux.bsky.social Disability Reporter @ Mother Jones • jmetraux@motherjones.com • She/her • Berkeley Journalism alum • Signal: @juliametraux.49
Author page: https://www.motherjones.com/author/julia-metraux/
Free monthly newsletter: https://bit.ly/4tUXg9r
Janet Dafoe @janetdafoe.bsky.social ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist. 
Brianne Benness @bennessb.bsky.social currently: sick / haunted in Western Mass, host of No End In Sight - a podcast about life with chronic illness, creator of #NEISVoid | previously: Stories We Don’t Tell in Toronto | she / her
Lisa McCorkell @lisamccorkell.bsky.social formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
Open Medicine Foundation (OMF) @openmedf.bsky.social OMF is fundraising to support open, collaborative research to find effective treatments and a cure for ME/CFS, Long COVID, and related diseases.
Stephanie Grach M.D. M.S. @grachstephanie.bsky.social Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
#MEAction Network @meactnet.bsky.social A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet
#pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
Dan Wyke @danwyke.bsky.social Severe M.E. patient, person-centred counsellor (currently not practicing), recovering poet (Rack & Waterloo Press)
Patient-Led Research Collaborative @patientled.bsky.social Patient-Led Research for #LongCovid! http://patientledresearch.com
Hannah Davis @ahandvanish.bsky.social Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
It's ME(Jaime) @exceedhergrasp1.bsky.social Scientific Director, #MEAction
Affiliations: Stanford Genome, Université de Montréal
TIME100 Health
#ME, #EDS, #POTS, #LongCOVID
Views my own
The Sick Times @thesicktimes.org Award-winning nonprofit news site chronicling the #LongCOVID crisis. Founded by @BetsyLadyzhets.bsky.social & @MilesWGriffis.bsky.social
Website: thesicktimes.org
Newsletter: thesicktimes.org/newsletter
Donate: the-sick-times.fundjournalism.org
Tom Kindlon @tomkindlon.bsky.social 95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.
With ME/CFS 37 years, severe ME 32 years.
@IrishMECFSAssoc trustee 29 years
26 publications in peer-reviewed journals
Social media: https://me-pedia.org/wiki/Tom_Kindlon
Miles W. Griffis @mileswgriffis.bsky.social Co-founder/editor @TheSickTimes.org
Columnist @HighCountryNews.org
miles@thesicktimes.org #LongCOVID
Julie Rehmeyer @julierehmeyer.bsky.social Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. I mostly write about complex chronic illness and math. Bylines in NYT, WashPost, Discover, Wired, Slate, Stat News, Science News, lots more. She/her.
C.H. Romatowski @chromatowski.bsky.social This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing.
ME ‘05, LC ‘23, many of their friends along the way. Very severely ill (FUNCAP 0.9). No unsolicited advice please!
Solve M.E. @solveme.bsky.social Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid, and other infection-associated chronic conditions.
Elke Hausmann @drelke.bsky.social German, English, Spanish
Sociology, Medicine, General Practice
@valebodi.bsky.social @valebodi.bsky.social Surviving MyalgicE aka ME/CFS & AAG to tell the story, pwME & advocate w/ a JD. Into MEdical, Social, Climate Justice & Arts. ME-dical apolide, Human Neutrino, Gnarled pacer
MEssland Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
Renegade Research @renegaderesearch.bsky.social Patient-led 501c3 nonprofit focused on #MECFS & #LongCovid 💙 https://linktr.ee/renegaderesearch • Runs @remissionbiome.bsky.social