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
@leticiasaurus.bsky.social
Co-lead & patient-researcher @patientled.bsky.social. Biologist, PhD. Brasileira.
@longcovidpharmd.bsky.social
Pharmacist interested in Long COVID and ME/CFS research Pro-mask, pro-clean air! Substack: https://pharmd.substack.com/
@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
@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.
@scheibenbogen.bsky.social
Immunologist and ME/CFS researcher @Charité https://cfc.charite.de/
@longcovidphysio.bsky.social
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies https://bio.site/longcovidphysio
@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
@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.
@katboniface.bsky.social
Riverside, CA Equine History Collective Renegade Research https://katboniface.wordpress.com/the-glutamate-boss/
@crunchme.bsky.social
CrunchME is a patient-led organisation, creating the evidence and insight base needed to crunch infection-associated chronic conditions (IACCs), including #MECFS and #LongCovid. 📍 https://crunchme.org/
@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
@lizmeactga.bsky.social
Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.
@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
@thereforme.bsky.social
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
@oonaghcousins.bsky.social
@polybiorf.bsky.social
501(c)3 transforming how #LongCovid, #ME/CFS & Lyme+ are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
@sickandtiredaus.bsky.social
http://heymp.com.au/sickandtired http://change.org/LongCOVIDInquiry http://www.instagram.com/sickandtiredaus https://x.com/JordanCrane2?t=qsba4zmDGLFUas_tcP_pnw&s=09 https://www.facebook.com/share/19nSvtGPNz/
@rebeccanagle.bsky.social
Cherokee writer and journalist, check out my substack: https://gohini.substack.com/ Author of BY THE FIRE WE CARRY out now https://www.harpercollins.com/products/by-the-fire-we-carry-rebecca-nagle?variant=41322925359138
@resiapretorius.bsky.social
Distinguished professor, Stellenbosch University and Honorary professor, University of Liverpool.
@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
@rorpreston.bsky.social
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions 💙 #MECFS #LongCovid #IACC #PAIS 📍 https://crunchme.org/
@lygianavarro.com
lygianavarro.com editorial director @discojourno.bsky.social indie journalist. editor. reporter. producer (ES & EN) cover: Latine, LGBTQ+, health stories +more #DisabilityJustice. disabled. queer. 4yrs #LongCovid. 12 w #ME. imm in Tkaronto Signal: Lygia.65
@ginaassaf.bsky.social
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
@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
@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
@compulsiveobserver.bsky.social
Installation artist. Perfume fanatic. Chronically ill. Concordia University PhD student(disability studies + performance studies + practice-based research.) Ex jammer, current failure. She/her Montréaler in Edmonton. https://linktr.ee/ChloeLum
@jenbo1.bsky.social
@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
@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
@c19lap.bsky.social
A U.S. based #grassroots, #patientled, all-volunteer 501(c)(3) #nonprofit organization advancing the understanding of & expediting solutions for #LongCOVID. #FBLC #IACC #Disability #PublicHealth https://www.longhauler-advocacy.org
@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
@wilhelminaj.bsky.social
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
@johnvsjonvsme.bsky.social
#JohnVsJonVsME campaign to get John Oliver or Jon Stewart to bring the awful history of #MyalgicEncephelomyelitis #GreatestMEdicalScandal to light JohnVsJon.com
@mayalongcovid.bsky.social
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
@ravenscimaven.bsky.social
Raven Baxter, Ph.D. -- Molecular biologist helping people + companies globally learn + share science, for a more scientifically engaged world. iloveraven.com
@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.
@francesryan.bsky.social
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled. E: frances.ryan.freelance@guardian.co.uk
@rejayjay.bsky.social
Silly Chicago girl, marketing professional, long covid patient. No DMs unless you donate to the mutual aid I repost. 💜
@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
@vashetc.bsky.social
ph.d. perpetually horizontal. writer, researcher. ✍🏽 v ash e t c [dot] com — vashetc.com profile ID: brown person poses in wheelchair in front of a wall of pink paperflowers. banner: lake & mntn @ sunset. There’s a silhouette of a family in the water
@irishmecfsassoc.bsky.social
Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association NB: Posts should not be considered advice Registered Charity Number 20100254 CHY 22039 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also
@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. #MECFS #EMSFC #pwME #paEM #MillionsMissing . Member of the World ME Alliance.
@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. 💖
@dualiejulie.bsky.social
(She/her) In LongCOVID/M.E. hell looking for a way out! First wave Longhauler. Former engineering student. Trying to get my personality back from the disease. Very cute dog.
@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/
@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.
@carolbarrel.bsky.social
I enjoy cats and bicycles. I much less enjoy my chronic illnesses. #pwME
@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
@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
@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
@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
@eyebrowse.bsky.social
@cuboidalhug.bsky.social
@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.
@katieklocksin.bsky.social
One of the #MillionsMissing with #LongCovid #MECFS // Once a radio and podcast producer, always a Transom alum 😷 Long covid is common 😷
@nelehelena.bsky.social
I'll "tweet" here about the things I don't like if the other app goes down
@julialmv.bsky.social
Long COVID patient-researcher @ Scripps Research & Patient-Led Research Collaborative
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024
@yogafogie.bsky.social
DMV native. COVID long hauler. Patient-Led Research Collaborative.
@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.
@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.
@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
@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 🇬🇧 & 🇳🇱
@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
@fvrhijn.bsky.social
MD | rheumatology resident #ME due to #LongCovid Nonbinary 🌈🌈🌈🌈 | views are mine.
@longcovidfam.bsky.social
A US non-profit supporting children with Long Covid and their families.
@melindaiscomplex.bsky.social
My body has given up but I haven't... ME/CFS Patient Leader & Complex-Chronic Disease Advocate (on hiatus). Co-founder #MEAction Maryland. Bed-tethered disabled by severe ME & LC & comorbids. Orioles/Ravens/Caps fan. She/her
@twoshaws.bsky.social
#MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation 😷
@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
@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
@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
@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.
@midcatecrisis.bsky.social
Chronically ill, autistic, demi/greyace (mostly in bed, mostly homebound) ME/CFS and probable LC 😷😷😷 Interests: climate, COVID, disability justice, nature, parenting, socialism Ltd cog energy, don't tend to follow back. Toronto, Canada She/her/they
@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
@turnoftheshrew.bsky.social
Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.
@vickyvdtogt.bsky.social
Community organizer | Researcher | Advocate | Director of development at Research-Aid Networks 🌐 Author of The Long Covid Symptom Diary, now available in EN, NL & ES! - www.ddxpublishing.com
@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
@longcovidkids.bsky.social
UK-based international charity supporting & advocating for children & young people with #LongCovid & related conditions. #LongCovidKids #LongCovid #PaediatricLongCovid #LongCovidAwareness
@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.
@osayko.bsky.social
Theater/film/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.zone
creator of longcovidstudies.net, member of the Patient-Led Research Collaborative, and freelancer.
@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.
@moppety.bsky.social
Parisienne Buffalonian linguist spoonie mom. http://bcopley.com "The line separating good and evil passes...right through every human heart." -Solzhenitsyn
@remissionbiome.bsky.social
Community Science Project http://RemissionBiome.org
@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.
@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