Myalgic Encephalomyelitis & Long COVID Community
Our amazing community of researchers, clinicians, patient partners, advocates, patient leaders, journalists that care, carers, loved ones, PwME and PwLC.
Created by
@sabrinapoirier.bsky.social
@coresinai.bsky.social
We are a center at Mount Sinai Hospital in NYC, advancing treatment and knowledge of Long COVID, Connective Tissue Disorders, ME/CFS, and Post-Treatment Tick and Vector Borne Illnesses. core.myflodesk.com
@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.
@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
@oonaghcousins.bsky.social
@colleensteckel.bsky.social
Advocate for #MyalgicEncephalomyelitis using ME-ICC. Contracted ME in 1989 Substack: https://colleensteckelmeiccinfo.substack.com/ Volunteer at www.MEadvocacy.org Aspiring writer of paranormal fiction
@drbevans.bsky.social
Professor of Human Geography at Uni of Liverpool, research on chronic illness, energy limiting conditions, fat embodiment. Feminist, Fat Activist, Spoonie, PwME, Friend, Sister, Daughter, Person. Hobbies: SF, cats, knitting/crochet. she/her or they/their 🏳️⚧️
@profmarkfaghy.bsky.social
Professor of Clinical Exercise Science - Clinical Exercise Physiologist - Researcher in #LongCOVID - Nature Research Award Winner 2024 - Derby UK
@elizacharley.bsky.social
Actress on Pause with Myalgic Encephalomyelitis 🌍 Florence, Italy <-> Melbourne, Australia 🎙️ Writer, Producer, Actor 🦋Living that Stockdale Paradox life
@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
@dreamsatstake.bsky.social
Mostly bedridden with severe myalgic encephalomyelitis/ME Interests: health, reading, nature, film, photography, art, travel, social issues Former blog: www.dreamsatstake.com
@elinz.bsky.social
ME/CFS, science, history of ideas, disability, photography, film, board games, curiousity, history of medicine. Location: Sweden #pwME #MECFS #NEISvoid #ChronicIllness Came here from: https://twitter.com/ezchili
@mswcreations.bsky.social
Medicine Song Woman. 🎤😷Indigenous Keynote Speaker/Singer, Hand Drummer. Long COVID, CFS/ME & CPTSD. GenX. Trauma-informed virtual circles and mentoring for COVID-conscious women. NO DMs without permission. https://medicinesongwoman.com 😷she/her
@faithie.bsky.social
SevereME/vax injured. Can't read, write, watch, walk or talk much. Just me, my bed & my swollen brain. Trying to stay sane. Roy Kent is my spirit animal.
@karenlhargrave.bsky.social
Co-founder #ThereForME | Calling for an NHS that’s there for ME & Long Covid | www.thereforme.uk Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave
@tenaciousmumma.bsky.social
Mum & carer of Sophia, bedbound with very severe ME. Constantly searching for answers and a way out of the abyss. #lymedisease #severeME #POTS #chronicpain #allodynia #vertigo
@martinangler.com
Science Journalist #LongCovid Context ABSW 2024 Awards Finalist theMHS 2024 Awards "Highly Commended" Portfolio https://muckrack.com/martinangler
@mariefollayttar.bsky.social
@MaineAllCare #UniversalHealthcareNow Sea Glass Collector -Advocate - Artist - Poet-Community Organizer - Political Strategist Disabled Director of Mainers for Accountable Leadership(leave) Rare Chronic Cancer survivor Long Covid, Me/CFS Autistic Wabanaki
@sumonkyawmyint1.bsky.social
population health, scientist, feminist, living with rare disease, disability and chronic illnesses, NDIS, lover of books & science, all posts are personal
@franfriel.bsky.social
Author, Nature Rewilder🌱 Science/SF Geek🚀 Painter, Two-time Bram Stoker Award Finalist, Black Quill Award Winner, Ireland via California, LCFirstWave
@no1sarah.bsky.social
She/her. 🏳️🌈🏳️⚧️ ally @sarahslowsdown on the bird app In healthier times: Health & social care; homelessness & housing. Music, music, music. 🎶 Mostly here to connect with #LongCovid #MECFS #ChronicIllness #Dysautonomia #hEDS #MCAS
@andrewgiffordphoto.bsky.social
Hello, welcome :) This Invisible Illness: my first long form photography project, about ME/CFS a complex & challenging health condition - like Long Covid. https://linktr.ee/andrewgifford.photography Bristol, UK. 335.42 ppm. He/him/oi.
@juliadoubleday.bsky.social
Writer of The Gauntlet, about COVID and public health. Read: thegauntlet.news Subscribe: thegauntlet.news/subscribe
@ylangirl.bsky.social
Small but mighty, early educator teaching through the early pandemic years. 30 years teaching at-risk children & home visiting families. No longer essential now #LongCovid and #ME. Speak truth to power. #MaskUp 😷#EduSky #EarlyChildhoodEducation #VERMONT
@usuallyflannel.bsky.social
Librarian in the before times, artist, isolated. Disabled not disposable. There will be cats. She/Her Label⬇️applied manually so pronouns appear on posts.
@lindaoh.bsky.social
Interested in history, disability, politics, chronic illness. Loves animals, dry white wine, chocolate and my bed. Irish. Actually Autistic, ADHD, ME sufferer. Cat and dog person. @shurlookit in the bad place
@paulkeeble.co.uk
ME since 2017 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 ( (Severe)
@camillebuckner.bsky.social
My pen is huge and I love sentences. And words. Like wombat and elixir. People and planet over profits. Build new systems. Equity. Inclusion. Justice. #BLM #LandBack #DefundHate #LongCovid (3/2020) #MECFS #Poetry #AcademicSky
@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
@mefoggydog.bsky.social
Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - http://bit.ly/408o6LI
@franceyme.bsky.social
https://amandafrancey.com/ illustrator, amateur photographer and bird telepath. Advocating for myalgic encephalomyelitis #MECFS #LongCovid #ClimateAction
@ginaassaf.bsky.social
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
@quinnlenfant.bsky.social
Music / #Swiftie / Video Games / Friends / Family (Unceded) Canada
@sunsopeningband.bsky.social
Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Oregifornian. Storyteller. It’ll be ok in the end. If it’s not ok then it ain’t the end. Alphabet soup after my name: DPT PhD MPH OCS. https://www.linkedin.com/in/todd-davenport-2795ba10
@itsmepz.bsky.social
Music 🎶 Film 🎞️ Long form journalism 🧐 Hot Chips 🍟 Happiest by the sea 🌊 Here to hang with chronically ill & socially isolated peeps and advocate for better care for #pwME. Living small with ME on unceded Whadjuk Noongar country ("Australia")
@wanderingkayli.bsky.social
@wandering on Instagram ✍🏻 Disabled with Long Covid 38+ months Long COVID Researcher @sfu-fhs.bsky.social Master’s Student @sfucmns.bsky.social writing on biopolitics & Long COVID https://beacons.ai/wanderingkayli
@richardvallee.bsky.social
I play language. Mostly irreverent. Debugger. AI. Global warming. Integrity. Health. Science. Chronically ill punk rocker. I think about the future a lot.
@covidchronicles.bsky.social
Chronicling my journey through purgatory, graphically. Former athlete/composer/writer/woodworker. Saddled with debilitating COVID-induced metabolic dysfunction since Nov 2022. #LongCOVID #LC #MECFS #PEM #SickJokes
@birbsarereal.bsky.social
Forty-something retired biologist and ME advocate. Lover of birds and yarn. Former athlete. Wife. For kindness, empathy, inclusion, and accessibility. She/her. Crochet artist; https://www.ravelry.com/stores/stitches-by-sarah
@swastrosarah.bsky.social
Speaking up for everyone affected by severe/very severe #ME. Medical science has everything to learn about human biology from the post infection disease ME. #MEKills backstory https://x.com/swastrosarah?lang=en-GB
@purplespeedwell.bsky.social
Mostly bedridden with #MyalgicEncephalomyelitis, a devastating illness with little funding and no treatment. Toronto, Canada Ally of #pwLC #pwME #LongCovid #POTS #MCAS #MEcfs
@ruhisleep.bsky.social
Mom, humanist, anti-extractive. I do research - biomedical sciences through the lens of humanities & society with a focus on praxis. Settler on Turtle Island. Better Society 🔄Better Sleep Current focus MECFS & Long COVID research/care/community
@erinsandersnp.bsky.social
Proud Mama & Wife | #Disabled ♿️ | #WomxnsHealth Nurse Practitioner & Clinical Scientist | Prev MIT, Stanford | Catalyst | Connector | Healing | #JusticeAccomplice | She/Her
@dialoguesmecfs.bsky.social
https://www.dialogues-mecfs.co.uk Website with videos created by Natalie Boulton & Josh Biggs with a Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of #ME/CFS and a longer film explores the wider context and history.
@anilvanderzee.bsky.social
Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using BlueSky to raise awareness for #MyalgicE | #IACC I #PAIS #art2cureME #pwme #millionsmissing
@buonsenso.bsky.social
Pediatric Infectious Disease doctor. Fighting to care for children with Long Covid & ME/CFS. My book on my LONG COVID JOURNEY: https://tinyurl.com/4tsvhwat
@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
@julianlenfant.bsky.social
British/Canadian; Educational Developer/Adjunct Prof. @ Saint Mary's University; CELTA Tutor/Assessor; Doctoral Researcher (AI in Education); MEd Plurilingual Education; Husband and Dad.
@icancmeresearch.bsky.social
Interdisciplinary #Canadian Collaborative #MyalgicEncephalomyelitis Research Network (created in 2019). #MECFS #PwME #LongCovid (Account managed by Sabrina.)
@aqem.bsky.social
L’AQEM vise l'avancement de la connaissance et la reconnaissance de l' #EMSFC et au mieux-être des #paEM | #Canada #Quebec | www.aqem.ca | IG/X @aqem_sfc #EncephalomyeliteMyalgique #MyalgicEncephalomyelitis #MECFS #pwME #CovidLongue #CovidLong #LongCovid
@kimpie.bsky.social
24 | Living with ME, Endometriosis & … | Looking for some connection | she/her ☀️
@vonhatti.bsky.social
Unwell book editor, once actor/cabaret. Fake name, real face. #ChronicIllness #Publishing #Cats #Languages #ComicSongs https://m.youtube.com/@Theheraldpatch
@writebiggs.bsky.social
Reader, writer, sleeper agent Loves history, folklore & growing things ME + expansion packs ADCI network ♿️ | she/her Curtis Brown Breakthrough winner ‘24, Jericho Writers Mentorship, Novelry Octopus winner ‘23. LL Lucy Cavendish Prize ‘24
@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
@daltmann.bsky.social
Professor of Immunology, Imperial College London. Editor of OUP Oxford Open Immunology. Co-author - Penguin Long Covid Handbook. Discusses: Covid-19, Long Covid, T cells, immunogenetics and HLA, respiratory infection, science policy, arboviruses, C19th lit
@resiapretorius.bsky.social
Distinguished professor, Stellenbosch University and Honorary professor, University of Liverpool.
@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
@scheibenbogen.bsky.social
Immunologist and ME/CFS researcher @Charité https://cfc.charite.de/
@fvrhijn.bsky.social
MD | rheumatology resident #ME due to #LongCovid Nonbinary 🌈🌈🌈🌈 | views are mine.
@drdanielloy.bsky.social
Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
@bshuell.bsky.social
Husband to a wonderful wife, father to 2 amazing kids, advocate, former software developer with myalgic encephalomyelitis, Living a limited life, missing from many places. Aspiring to be well again. Dog Dad. Occasionally bipedal. Twitter/X refugee. #mecfs
@katha1970.bsky.social
Here for research and info on #Migraines #MECFS #LongCovid #MCAS #MCS #ChronicPain #MetabolicHealth #Neuroscience #Psychology #MedicalGaslighting, posts German & English, hobby songwriter
@isabelrb.bsky.social
CEO | Renegade Research | Project Director of Remission Biome NBC-HWC, AIP-C @remissionbiome.bsky.social
@nelehelena.bsky.social
I'll "tweet" here about the things I don't like if the other app goes down
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
@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.
@cinnamonrollalong.bsky.social
#pwME #MECFS #pwLC #LongCovid #PoTS #Dysautonomia #MCAS #LongCovidKids #CovidisNotOver #CovidisAirborne
@minetodo.bsky.social
Storyteller. Advocate. Stand By ME/CFS! #StandByMEcfs #StillSickStillFighting #MEcfs since 2009
@sammiemc.bsky.social
Long Covid Kids Founder & CEO Hoping to be on the right side of history. ♿️#LongCovid ✳️#CleanAir 🙋🏻♀️Campaigner 🧠🧡🫀#LongCovidKids 🌊#ColdWater 🧜🏻♀️#Swimming 🧘🏻#Pilates coach - #Pacing since 2020 🦠 😷 🫅🏼#CoronationChampion 💥#Volunteer
@emilyrj.bsky.social
Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news, media and accessibility design consults. @emily_rj on Twitter #CripTheVote #Iowa ♿️🏳️🌈📚
@monzamayhem.bsky.social
Mother of child with ME/CFS; trying to create a life for him while waiting for answers from medical research. My oldest is a wildland firefighter. I post primarily about public health, ME/CFS, Long Covid, and wildland firefighting.
@platouche.com
Business Analyst | #longcovid #PASC #patientpartner | Long Covid advocate Analyste d'affaires | #covidlongue #covidlong #PACL #patientpartenaire #quebec | Défenseur de la COVID longue
@meadvocacyproject.bsky.social
The ME Advocacy Project is a grassroots initiative founded by individuals living with post-infectious illnesses Myalgic Encephalomyelitis and/or Long COVID. Unceded Canada
@kirsties.bsky.social
UK #pwME #pwLC #MECFS #LongCovid #PEM (post-exertional malaise) as well as #Politics and other related chat. I use lists to manage my chats here. Feel free to use them or ask to be added https://writingandme.com/
@michelleb4.bsky.social
A mixture of stuff #MECFS #LongCovid #frailty #mtb #cycling #feelthefearanddoitanyway co-founder @PhysiosForME Views are all my own
@claguenjc36.bsky.social
Physio researcher/Senior Lecturer @LivUni co-founder @physiosforme | PhD | neuro rehab/exercise incl CV/fatigue/mental health/ME/Longcovid/EDI/all views my own she/her
@drclairetaylor.bsky.social
@morgfair.bsky.social
Actress. Politics, Foreign Policy, Science & RockNRoll. Love animals
@stillcovidingca.bsky.social
https://stillcoviding.ca/ | https://linktr.ee/stillcovidingcanada #StillCoviding #COVID #CovidIsntOver #BringBackMasks #YallMasking #LongCovid #CovidLongue
@stitchingtwitcher.bsky.social
Spotter of patterns, sometimes wishing I could unsee ME/CFS, Chronic Illness, AuDHD, Still Coviding
@amymooney.bsky.social
Occupational therapist, advocate, and caregiver dedicated to supporting individuals with chronic complex conditions. Offering therapeutic care for those affected by #MECFS, #LongCOVID, #POTS, #EDS, and related conditions. http://www.OT4ME.com
@guyaneb.bsky.social
@abrokenbattery.bsky.social
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos. https://linktr.ee/abrokenbattery
@ashleyhultman.bsky.social
#TeachMETreatME #hEDS #MyalgicEncephalomyelitis #MESpine #CCI #POTS #longCovid #AuDHD #endo • Capitol Hill, AFL-CIO, and AFT alum • She/her
@remediescounseling.bsky.social
Remedies Counseling: Counselor only for people living w chronic illness - #MEcfs, #LongCOVID, vx injury, MCS/ES, #Lyme, #HIV, etc. https://remediescounseling.com/ I am living w MEcfs and HIV. Competed 3x at triathlon world champs.
@jefferysmithme.bsky.social
Lover of old films, books, Doris Day and Rosemarys Baby and other who-haa. Cranky empath. Dealing with servere ME. and cancer. Politically sensible, sensitive and left.
@neurologistmom.bsky.social
A neurologist, M.D., mother of a 16-year-old with #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains. 📍Seattle, WA
@broadwaybabyto.bsky.social
Disabled & chronically ill writer. Former theatre critic. Clean air is a human right & vulnerable people aren’t expendable. Covid is airborne 😷 https://www.disabledginger.com A redheaded snippet who loves Sondheim. Once fainted into Hugh Jackman.
@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/
@klazell.bsky.social
Artist, Long Covid, ME/CFS, POTS, EDS, previously Data Scientist. Life on pause due to #longcovid. Climate collapse aware.
@mfairma.bsky.social
ME. Spouse w LC, ME. Writer, bread baker, daydreamer. Still waiting on fair funding and apology from HHS. Masking like someone’s life depends on it.
@ravenscimaven.bsky.social
Raven Baxter, Ph.D. -- Molecular biologist helping people + companies globally learn + share science, for a more scientifically engaged world. iloveraven.com
@petecaruso.bsky.social
Treat Long COVID, ME, POTS, Sjogrens, Mast Cell, and Chronic Lyme. Develop safe vaccines, treat vax. injury. Spouse has ME 30+ yrs. CrunchME.org Pfp: A man wearing a green face mask Banner: Colorful MEmes from patient-led Long COVID and ME awareness