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!
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.
Ed Yong @edyong209.bsky.social Writer, journalist. Science, health. Pandemics, animals. Birder, photographer. Many words, some awards. AN IMMENSE WORLD, I CONTAIN MULTITUDES. Married to Liz Neeley, parent to Typo. he/him
📷 Canon R6mkii + RF 800mm
Edyong.me
Karla Monterroso @karlaliliana.bsky.social Part chaplain, part cross-pollinator, part coach, part builder. Multiracial multicultural institution dreamer. Brava pero vulnerable.
www.bravaleaders.com
Miles W. Griffis @mileswgriffis.bsky.social Co-founder/editor @TheSickTimes.org
Columnist @HighCountryNews.org
miles@thesicktimes.org #LongCOVID
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
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
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
Hannah Davis @ahandvanish.bsky.social Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
Patient-Led Research Collaborative @patientled.bsky.social Patient-Led Research for #LongCovid! http://patientledresearch.com
Dan Wyke @danwyke.bsky.social Severe M.E., person-centred counsellor (not practicing), recovering poet (Rack & Waterloo Press)
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
#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
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
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.
Lisa McCorkell @lisamccorkell.bsky.social formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
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
Janet Dafoe @janetdafoe.bsky.social ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist. 
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
Richelle Sepulveda @richellesepulveda.bsky.social Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
Billy Hanlon @bhanlon15.bsky.social ME/CFS | Long COVID | IACC
S💿phie CD @sophie-cd.bsky.social Australian, Cypriot & Greek anti-disease designer existing in Berlin. Been to hell & back thanks to the pandemic. check @sophsoph.psd & @berlin_buyers_club on the gram 🤓
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.
Eric Topol @erictopol.bsky.social physician-scientist, author, editor
https://www.scripps.edu/faculty/topol/
Ground Truths https://erictopol.substack.com
SUPER AGERS https://www.simonandschuster.com/books/Super-Agers/Eric-Topol/9781668067666
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/
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
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
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/
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
Monica Verduzco-Gutierrez @mvgutierrezmd.bsky.social Professor & Chair of Rehab Med in SATX | Mom, runner, #LatinasInMedicine, #Physiatry, #LongCOVID
Isabel Ramirez-Burnett @isabelrb.bsky.social CEO | Renegade Research | Project Director of Remission Biome
NBC-HWC, AIP-C
@remissionbiome.bsky.social
Karen Lubell @karenlubell.bsky.social Caregiver. #mespine #cci #eds #mecfs
elle carnitine 🪳 @ellecarnitine.bsky.social immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
DanielleMors @daniellemors.bsky.social Audiobook Narrator. Writer. Singing songs and smirking. She/her. hEDS, POTS, ME/CFS
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
Elizabeth Milo @akaemilo.bsky.social Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease
Animals deserve better.
Missing Ireland.
Writer at ElizabethMilo.com
#MaskUp
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. 
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: 
steffi @mecfshawaii.bsky.social Patient Advocate / pwLC / Caregiver to pwME 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
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.
Melissa Gira Grant @melissagiragrant.com staff writer, @newrepublic.com // author, A WOMAN IS AGAINST THE LAW (2KTK, @littlebrown.bsky.social) + PLAYING THE WHORE (Verso)
// melissagiragrant.com
» melissa@melissagira.com
» tips (encrypted): melissagira.01 on Signal
@nyguild.bsky.social member
Michael Stingl @neurostingl.bsky.social Facharzt für Neurologie
ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
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
Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social PD Dr. (religion, empirical education research)
mother of Mila who suffers from very severe ME/CFS (Bell 0)
https://milaandmecfs.files.wordpress.com/2022/05/mila-spiegel.pdf
Vienna, Austria
#CleanAir
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/
Sparrow / Liz @untonuggan.myatproto.social angry mast cells (HaT and #MCAS) + #POTS + neurodivergent. Disabled queer. white. emperor of typos. brain fog zone ⚠️. they/them
🎶 iii'm still masking 🎶
working on porting more of my body science infodumps and such to:
liminalnest.wordpress.com
#NEISvoid
Fi Lowenstein @filowenstein.bsky.social writer + journalist covering health justice, wellness culture, LGBTQ+ stuff + more...
https://www.fionalowenstein.com/
The Long COVID Survival Guide:
https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/
they/them 
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.
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
Tess Falor, Ph.D. @tessfalor.bsky.social Founder - Renegade Research
#MECFS #LongCovid
Bridget Copley PhD @moppety.bsky.social Parisienne Buffalonian linguist spoonie mom. http://bcopley.com "The line separating good and evil passes...right through every human heart." -Solzhenitsyn
Jonas R. Kunst @kunstjonas.bsky.social Professor of Communication and Psychology at BI Norwegian Business School and the University of Oslo
Past Yale, Harvard, UiB. Editor-in-Chief at Advances.in
Father. Views are my own.
Ezra S @ezra.zone creator of longcovidstudies.net, member of the Patient-Led Research Collaborative, and freelancer.
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.
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.
Daniel Lewis @daniellewis.bsky.social My #LongCovid is mainly #PEM + #POTS + #MCAS
Long Covid Kids @longcovidkids.bsky.social The charity supporting & advocating for children & young people with Long Covid & overlapping illness.
#LongCovidKids #LongCovid #PaediatricLongCovid
#LongCovidAwareness #MECFS
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
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
Cate @midcatecrisis.bsky.social I have had myalgic encephalomyelitis (ME) since 2020 and spend the majority of my time in bed, of necessity. Mostly homebound. I used to be a climate activist, but spend any available energy parenting now. FUNCAP 2.5
Toronto, Canada
Autigender She/they 😷
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
Janna Moen, PhD @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
Dr. Markus Fraczek @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
TwoShaws @twoshaws.bsky.social #MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation 😷
melinda_is_done 💦 @melindaiscomplex.bsky.social My body has given up but I haven't...
Bed-tethered disabled Advocate on hiatus (but RESISTing) due to severe ME & LC & comorbids. Co-founder #MEAction Maryland.
Orioles/Ravens/Caps fan. She/her
🩷💜💙
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.
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
Josh @properchels34.bsky.social Long Covid, ME/CFS, POTS…. For now 
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 🇬🇧 & 🇳🇱
Liz Worthey @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
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.
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.
Michael Sieverts @yogafogie.bsky.social DMV native. COVID long hauler. Patient-Led Research Collaborative.
Brian Fog @uselesspriest.bsky.social Long COVID, mild, since Apr 2022
ME / Long COVID diagnosed May 2024
Julia MV @julialmv.bsky.social Long COVID patient-researcher
@ Scripps Research & Patient-Led Research Collaborative
Nele @nelehelena.bsky.social I'll "tweet" here about the things I don't like if the other app goes down
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
🌻🪻🌼
Lonnie R Marcum, PT BSHCA @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. 
Cindy L @cuboidalhug.bsky.social - E Miri Ranel @eyebrowse.bsky.social
@anneromatowski.bsky.social @anneromatowski.bsky.social tinyurl.com/ARealCancer
Hey Janae🧡 @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
Anna Kerr @annajk.bsky.social ME patient, art appreciator, advocate, mother.
Rachel Riggs @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
Kerrie McCure @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
Kayli Jamieson @wanderingkayli.bsky.social @wandering on Instagram ✍🏻
Disabled with Long Covid 52+ months
Long COVID Researcher @sfu-fhs.bsky.social
Master’s in Communication
kaylijamieson.notion.site/research
C Barrel @carolbarrel.bsky.social I enjoy cats and bicycles. I much less enjoy my chronic illnesses. #pwME 
Christina Steiger @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. 
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/
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.
Shelley Jules @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. 💖
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.
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
victoria @vashetc.blacksky.app † doktora | research+policy | perpetually horizontal
ID’s: Brown skin grl w/ curly hair wearing shirt that says hot girls arent ableist. Banner: Sepia picture of a couple married w/ family around.
vashetc.com | restandmecfs.com | survivorsandallies.com