ME, Long Covid & co
Accounts and feeds related to ME/CFS, Long Covid and related conditions and topics. (FAQ: if you are hoping to be listed on a starter pack, unfortunately the format has a cap of 150 accounts and this pack has hit that, so I recommend creating another pack to cover more of the community!)
Created by
@chromatowski.bsky.social
@untonuggan.bsky.social
angry mast cells (HaT and #MCAS) + #POTS + neurodivergent. ♿ 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
@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/
@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
@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
@mervetepephd.bsky.social
PhD Microbiologist // Biomineralization, AMR & Biofilms // @remissionbiome.bsky.social team Defend science, resist ignorance https://twitter.com/mervetepePhD http://mastodon.online/@MerveTepe http://post.news/@/mervetepephd Ankara/New York/Tel Aviv
@neurostingl.bsky.social
Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
@melissagiragrant.com
staff writer, The New Republic // A WOMAN IS AGAINST THE LAW (Little, Brown) out in 2026 // PLAYING THE WHORE (Verso) // member, NewsGuild of NY » email: melissa@melissagira.com » press releases/lists: mggrant@tnr.com » Signal: melissagira.01 (link below)
@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.
@mecfshawaii.bsky.social
Patient Advocate + Caregiver to pwME/Septad 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
@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:
@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.
@akaemilo.bsky.social
Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease Animals deserve better. Missing Ireland. Writer at ElizabethMilo.com #MaskUp
@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.bsky.social
Audiobook Narrator. She/her. hEDS and ME/CFS patient and advocate. Please wear a mask.
@dguckenheimer.bsky.social
🥄 Sociologist, writer, feminist, anti-facist, anti-racist, disability justice activist. 🏳️🌈 Pronouns: she/they #livingwithableism #resist
@ellecarnitine.bsky.social
immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
@isabelrb.bsky.social
CEO | Renegade Research | Project Director of Remission Biome NBC-HWC, AIP-C @remissionbiome.bsky.social
@mvgutierrezmd.bsky.social
Professor & Chair of Rehab Med at UT Health San Antonio | Mom, runner, #LatinasInMedicine, #Physiatry, #LongCOVID
@angelamswinca.bsky.social
🦠😷♿️#LongCovid disabled | 📢Chicané activist | 🏠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
@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/ ]
@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
@diatoma.bsky.social
Ella/she/her. I write, I read, I draw plants. Chronically ill en la Ciudad de México. #ME #MECFS #POTS
@betsyladyzhets.bsky.social
editor/co-founder @thesicktimes.bsky.social | journalist covering Long COVID & related crises | she/her/🏳️🌈 email: betsy@thesicktimes.org | signal: betsyladyzhets.25 | https://thesicktimes.org/
@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
@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.
@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
@phicd.bsky.social
Another Australian (Cypriot & Greek) designer existing in Berlin. Been to hell & back thanks to the pandemic. End #prescribedharm #longcovid #MECFS check @sophsoph.psd & @berlin_buyers_club on the gram
@richellesepulveda.bsky.social
Long Covid, MECFS, ADHD, etc. Patient-led research is my jam. A bit obsessed with GIP.
@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: bit.ly/3Ee9lRO
@janetdafoe.bsky.social
ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.
@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
@lisamccorkell.bsky.social
formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
@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.
@grachstephanie.bsky.social
Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
@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
@emilyesfraser.bsky.social
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
@danwyke.bsky.social
M.E. inactivist, person-centred counsellor, recovering poet (Rack & Waterloo Press)
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
@ahandvanish.bsky.social
Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@thesicktimes.bsky.social
A nonprofit news site chronicling the #LongCOVID crisis. Founded by journalists @BetsyLadyzhets.bsky.social & @MilesWGriffis.bsky.social Website: thesicktimes.org Newsletter: thesicktimes.org/newsletter Donate: the-sick-times.fundjournalism.org
@tomkindlon.bsky.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 36 years, severe ME 30 years. @IrishMECFSAssoc trustee 28 years 26 publications in peer-reviewed journals Social media: https://me-pedia.org/wiki/Tom_Kindlon
@mileswgriffis.bsky.social
Co-founder/editor @TheSickTimes.bsky.social Columnist @HighCountryNews.org miles@thesicktimes.org #LongCOVID
@karlaliliana.bsky.social
Part chaplain, part cross-pollinator, part coach, part builder. Multiracial multicultural institution dreamer. Brava pero vulnerable. www.bravaleaders.com
@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
@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.
@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 severe (FUNCAP 0.8), thanks for your patience.