@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.
@jannamoen.bsky.social
Postdoctoral scientist studying the neurobiology of #longCOVID in the Iwasaki lab @ Yale. Patient, scientist, advocate. | βΏπ³οΈβπ | she/her My long COVID research newsletter: lcbreakdown.substack.com
@mareksjf.bsky.social
β’ Scientist β PhD mathematical physics (not MD) β Dr. rer. nat. β’ Interests: Medicine β History β Global Politics β’ #MECFS β‘οΈ http://mecfs.de/was-ist-me β’ EN β PL β DE
@twoshaws.bsky.social
#MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation π·
@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
@guusontheinternet.bsky.social
Creative turned activist #NietHersteld - Long Covid since janβ21 βΏοΈ - posts with brain fog, so pls bear with me - eager to learn - posts in π¬π§ & π³π±
@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
@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.
@yogafogie.bsky.social
DMV native. COVID long hauler. Patient-Led Research Collaborative.
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024
@julialmv.bsky.social
Long COVID patient-researcher @ Scripps Research & Patient-Led Research Collaborative
@katieklocksin.bsky.social
One of the #MillionsMissing with #LongCovid #MECFS // Once a radio and podcast producer, always a Transom alum π· Long covid is common π·
@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.
@cuboidalhug.bsky.social
@eyebrowse.bsky.social
@heyjanae.bsky.social
she/her | βοΈ | copywriter & π©΅ @ctpublic.bsky.social social media editor π©΅ Anime & Cartoons | ζ₯ζ¬θͺOK | Long Covid Mar 2022 | I complain often β¨πΊπ§‘ #CovidCompetent
@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
@kerriemccure.bsky.social
Writer / editor / photographer / full-time sick person. Cinema lover, cat-and-dog person, mostly horizontal. π #MECFS #hEDS #HSD #POTS #MCAS #CCI #CSFleak
@wanderingkayli.bsky.social
@wandering on Instagram βπ» Disabled with Long Covid 40+ months Long COVID Researcher @sfu-fhs.bsky.social Masterβs Student @sfucmns.bsky.social writing on biopolitics & Long COVID https://beacons.ai/wanderingkayli
@carolbarrel.bsky.social
I enjoy cats and bicycles. I much less enjoy my chronic illnesses. #pwME
@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.
@shelleyjules.bsky.social
MECFS from the long before times but not diagnosed for 23 yearsβ¦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. π
@vashetc.bsky.social
ph.d. perpetually horizontal. writer, researcher. βπ½ v ash e t c [dot] com β vashetc.com profile ID: brown person poses in wheelchair in front of a wall of pink paperflowers. banner: lake & mntn @ sunset. Thereβs a silhouette of a family in the water
@rejayjay.bsky.social
Silly Chicago girl, marketing professional, long covid patient. No DMs unless you donate to the mutual aid I repost. π
@francesryan.bsky.social
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled. E: [email protected]
@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.
@ravenscimaven.bsky.social
Raven Baxter, Ph.D. -- Molecular biologist helping people + companies globally learn + share science, for a more scientifically engaged world. iloveraven.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
@johnvsjonvsme.bsky.social
#JohnVsJonVsME campaign to get John Oliver or Jon Stewart to bring the awful history of #MyalgicEncephelomyelitis #GreatestMEdicalScandal to light JohnVsJon.com
@ashleyhultman.bsky.social
#TeachMETreatME #hEDS #MyalgicEncephalomyelitis #MESpine #CCI #POTS #longCovid #AuDHD #endo β’ Capitol Hill, AFL-CIO, and AFT alum β’ She/her
@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
@jenbo1.bsky.social
@kbishof.bsky.social
π΅ Founder & Pres. @C19LAP https://www.longhauler-advocacy.org π΅ Pw/ #LongCOVID, #IACCS, #Disability π΅ Fmr. Firefighter/Paramedic π΅ Fmr. Educator, Coach, & Dir. of Athletics π΅ B.S. (ex science & health promotion) π΅ #StillCOVIDING #COVIDConscious #Mask
@meighanstone.bsky.social
Executive Director of Long COVID Campaign @lccampaign.bsky.social. Past: President Malala Fund, Senior Fellow Council on Foreign Relations & Harvard fellow. Single mom living with #LongCOVID #MECFS #POTS #MCAS one day at a time βΏ
@ginaassaf.bsky.social
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
@lygianavarro.com
indie journalist editor. reporter. producer (ES & EN). cover: Latine, LGBTQ+, health stories +more #DisabilityJustice. disabled. queer. #LongCovid + #ME. immigrant in Tkaronto Signal: Lygia.65 lygianavarro.com contributing writer @discojourno.bsky.social
@rorpreston.bsky.social
Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions π #MECFS #LongCovid #IACC #PAIS π https://crunchme.org/
@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 ~π±(x3)π’ππ»π·πΈππΌοΈ ~ she / her ~ Love Is Love β€οΈππ§‘ππ©΅πππ€π€π©Άπ€π©· https://linktr.ee/thedsavannah
@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
@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/
@thereforme.bsky.social
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
@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. [email protected]
@lizmeactga.bsky.social
Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.
@nlizaki.bsky.social
#MEActionNetwork health activist. Patient, project manager, translator & polyglot. βπΎ #Stoic #WoC @NLizaki & @SaveLizNevra on Twitter. #MyalgicEncephalomyelitis since 6. 28 now. #PMDD #hEDS #POTS #MCAS #LongCovid