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
@joeblow604.bsky.social
Living with Myalgic Encephalomyelitis since 2011. Artist, Advocate, Creative Former Electro-Mechanical Prototyper Inclusive #pwME #MECFS #MCAS #POTS #Fibro #LongCovid #Disability #chronicillness #art #artist #painting #oilpainting #digitalart #photography
@richellesepulveda.bsky.social
Long Covid, MECFS, ADHD, etc. Patient-led research is my jam. A bit obsessed with GIP.
@rubyslippahs.bsky.social
COVID long-hauler, former archaeologist, opera singer, now fed employee. Kids, homeless, dogs. Isotopes+🍩 #WearAMask 🌎Ba'al Pit FB: is.gd/bp2vTA Media: covidlonghaulers@gmail.com YouTube.com/@covidlonghaulers @CLHAgainstFascism.bsky.social She/her
@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
@grachstephanie.bsky.social
Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
@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.
@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
@emilyesfraser.bsky.social
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
@katieklocksin.bsky.social
One of the #MillionsMissing with #LongCovid #MECFS // Once a radio and podcast producer, always a Transom alum 😷 Long covid is common 😷
@diatoma.bsky.social
Ella/she/her. I write, I read, I draw plants. Chronically ill en la Ciudad de México. #ME #MECFS #POTS #LongCovid
@ninjazz636.bsky.social
#LongCovid-disabled first waver. Loves gardening and decorating. Cheese addict. Science. Climate. 🏳️🌈 ally. Pardon my French! 💚 Green means hope. #AirborneAware 😷 #FuckTrump #SlavaUkraini 🇺🇦
@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
@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
@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
@hazie.bsky.social
Very trustworthy citizen. Untethered. Quite Bothered. Wear a mask. https://gofund.me/80ade9a5
@harmonicsoul.bsky.social
X Refugee 11/8/24. California Native. ME/CFS and Long Covid Community. Looking to reconnect with other X Refugees in chronic illness community. Please say hello and give me a follow.
@luckytran.com
Public Health, Climate Justice, and Science Communication. Bylines in the Guardian, Washington Post, and more. WHO Fides member. Grist 50 Fixer. Opinions my own and do not reflect those of my employer. http://linktr.ee/luckytran
@daniellebeckman.bsky.social
Neuroscientist into virology & microscopy. Also a nerd that loves history, movies, books and video games! In a mission to help cure #LongCovid Long Covid Advisory Team: https://whn.global/long-covid-advisor. daniellebeckman.com
@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
@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
@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/ ]
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024
@bmhughes.bsky.social
Concerned citizen • Prof Psych • Writer • Galway • he/him A blog: https://thesciencebit.net/ A bio: https://brianmhughes.com/ A book: https://bloomsburycp3.codemantra.com/viewer/63721f10ee35880001aafadc 📷 https://www.photoblogism.net
@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
@mhornig.bsky.social
Translational MD-scientist, mom, 🎶 | Bklyn born + bred Pathogen/microbe-host interactions + 🧠outcomes across the life course | gut-immune-🧠 axis #ASD #ADHD #PANS/#PANDAS #OCD affective disorders/#TRD Alzheimer’s #MECFS #LongCOVID All posts = my views
@lisamccorkell.bsky.social
formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
@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.
@remissionbiome.bsky.social
Community Science Project http://RemissionBiome.org
@aaronca11.bsky.social
Billboard campaign/fundraiser here https://www.notrecovereduk.org
@longcovidadvoc.com
A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... https://www.longcovidadvoc.com/ 🛍️ https://longcovidadvoc.shop/
@longcovidkids.bsky.social
UK-based international charity supporting & advocating for children & young people with #LongCovid & related conditions. #LongCovidKids #LongCovid #PaediatricLongCovid #LongCovidAwareness
@apresj20.bsky.social
Compte officiel #ApresJ20 Association Covid Long France visant à favoriser la Reconnaissance, les Soins, la Recherche et la Communication sur le #LongCovid
@longcovidfam.bsky.social
A US non-profit supporting children with Long Covid and their families.
@carolstevens.bsky.social
Wife, Mom, Nanny. Proud to live in the maritime province of New Brunswick. Life altered by ME/CFS. Gobsmacked by US election results. Concerned the MAGA trend is growing in Canada too. #IStandWithCarney
@juliepinard.bsky.social
LC/ME since Jan2022. Patient-partner, neophyte in learning science behind post-infectious illnesses. 🇨🇦
@majulli.bsky.social
ME CFS, Long COVID, Comorbidities & disability advocate | Former social worker | She/Her/Elle | #MECFS #EMSFC #LongCovid #CovidLongue #DisabilityJustice Tiohtià:ke | Montreal 🇨🇦
@carriemcginn.bsky.social
Infection-associated chronic illness advocate | Life sidelined by #LongCovid #MECFS #POTS | #PatientPartner | MSc | Mom | She/Her | 🇨🇦 #Canada #Quebec #CovidConscious #StillMasking #MyalgicEncephalomyelitis #pwME #EMSFC #CovidLongue #CovidLong #pwLC
@wilhelminaj.bsky.social
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@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