Comprendre l'EM @comprendrelem.bsky.social Comprendre L’Encéphalomyélite Myalgique est une publication par et pour les personnes avec EM. Il est voué à la diffusion des savoirs sur l’EM/SFC, en français, de manière simple et didactique. Et aux réflexions politiques.
Immersion EM @immersion-em.bsky.social Informations, discussion, découverte autour de l'Encéphalomyélite Myalgique (EM/SFC), du Covid Long, des Syndromes Post Infectieux.
Site immersion-em.com
voxEM @voxem.bsky.social Collectif qui porte la voix des malades d'encéphalomyélite myalgique #EMSFC en France via des actions publiques et en ligne.
To make #MECFS voices heard, voxEM organize online and public actions throughout France.
🔗 https://voxem.fr/
📧 contact@voxem.fr
@katpelthyer.bsky.social @katpelthyer.bsky.social 
Long COVID Canada - Collaborative @longcovidcan-co.bsky.social We provide support, resources & reliable science-based information to patients, parents or caregivers of those suffering from Long Covid in Canada in our FB support group. Engaging w our community& building collaborations. Because we are STRONGER TOGETHER.
Alt National Park Service @altnps.bsky.social The official "Resistance" team of U.S. National Park Service. Our website: www.ourparks.org
Long COVID Physio @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
Sarah Dorner @sarahdorner.bsky.social Génie de l’environnement. Polytechnique Montréal.
Google Scholar : https://scholar.google.ca/citations?user=S2HhkvEAAAAJ&hl=en
Florian Naye @floriannaye.bsky.social PhDc Shared Decision Making, Chronic Pain, Université de Sherbrooke
Lucibee @lucibee.bsky.social Science defender and eco-worrier.
(she/her)
No DMs please (can't access).
Anne Bhéreur, M.D. @annebhereur.bsky.social Médecine familiale/soins palliatifs / Family & palliative medicine 🛑 par/by COVID-19 x 12/2020 ➡️ Recherche #CovidLongue #ACAI / Research #LongCovid #IACC - Post ➡️ Ø avis médical / Ø medical advice!
Association Covid Long Enfants @associationcle.bsky.social Association qui lutte pour la reconnaissance du Covid Long pédiatrique, la prise en charge des enfants, adolescents et jeunes adultes concernés, soutient les familles.
Kim Hanson @kiannha.bsky.social Neurospicy Occupational Therapist, Disability & Trans Advocate fighting to survive as immunocompromised, with Long Covid, PEM, POTS, MCAS, HEDS
ME RESPITE @merespite.bsky.social ME RESPITE is a registered New Zealand Charity providing practical support to those with Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) and related illnesses. 
Su @sunshineseeker.bsky.social Activist at heart. #AuDHD #neurodivergent with #MyalgicE and co-morbid illnesses. [she/her]
Hoping and doing my best for a better tomorrow, currently from my bed.
~
Autistin mit ADHS, bettgebunden aufgrund von ME und komorbiden Erkrankungen. [sie/ihr}
C.H. Romatowski @romatowski.bsky.social Recovering academic. Leftist. Perfumista. ME/CFS, MCAS, POTS. EN/FR. She/they. DMV. More some days than others.
Heather 🌈 @heatherfunk.bsky.social Disability justice. Former medical student before #mecfs she/her
Heidi @iktsuarpoked.bsky.social Severe ME/CFS going on 2 years, Optimistic 🛌🐛 , California mom, absurdist , Poké trainer, old enough to remember Friendster, she/her, 🏳️🌈 😴💤 
The Hypermobile Physicist @hedsphysicist.bsky.social X @hEDS_Physicist | Insta @hypermobile_physicist
#Bisexual PhD Physicist & industry engineer journeying and blogging through #ChronicPain with #hEDS #MCAS #dysautonomia.
Posts not medical advice. #BLM
https://linktr.ee/hypermobilephysicist
@BendyHEDS&Co @bendyhedsandco.bsky.social For Awareness & Support of
#Hypermobility #hEDS/HSD #POTS #ME/CFS #MESpine #Stenosis #MCAS & co.
#PANS/PANDAS & #LongCovid ally
#NEISVoid
#MedEd for EDS/HSD & co 🔗 conditions go to:
👉 https://gptoolkit.ehlers-danlos.org/ 👈
Living Not Existing @livingnexisting.bsky.social Reaching out to others with #ME/CFS. Learning to live a new life after Sepsis
Lou @apeskygirl.bsky.social Tree hugger with ME/CFS since 1992. #MEAction volunteer. Patient Advocate. OMF & Stanford Study Participant. ME/CFS • ND • POTS • EDS • One of the Millions Missing. Former Copywriter and Art Director. Now I watch squirrels and make things.
Jim LeBrecht @jimlebrecht.bsky.social Co-director, Co-producer, with Nicole Newnham, of the documentary Crip Camp. Filmmaker, disability rights and justice advocate/activist, Co-founder of FWD-Doc.org. #Save504
Lia Pas @liapas.bsky.social #SciArt symptomatology and #anatomy #embroidery, writing, and #MECFS. A bit of music too. Canadian settler. she/her. https://linktr.ee/lia_pas
Eric Feigl-Ding @drericding.bsky.social Public health & economic & AI warnings. Health and economic policy. Former 16 years at Harvard. DC & Virginia.
✏️ necsi.edu/eric-feigl-ding
🐥 x.com/drericding
📰 bit.ly/raisealarm
📝 drericding.substack.com/subscribe
Nasim Marie Jafry @nmjk.bsky.social The State of Me, HarperCollins, 2008 | Shortlisted Bridport Flash Fiction Prize 2012 & 2023 | Love jazz, tulips, birds, French films | Second novel in progress | Had ME since 1983 https://societyofauthors.org/soa-member/nasim-marie-jafry/
cbme-mark.bsky.social @cbme-mark.bsky.social Severe ME/CFS with added Long Covid. Running a support group in Cambridge, UK.
Pronouns: depends how the day pans out
Katie J. @kjohnstone.bsky.social ME/CFS and related things. (she/her)
I'm also trying out a more lighthearted personal account: @lighterkatiej.bsky.social- J Jenny Ceolta-Smith #FBLC @jceoltasmith.bsky.social Background #RetiredOccupationalTherapist due to #LongCovid background in vocational rehabilitation & PhD research includes #DWP policy, provision & front line practice. Not fully active here yet.
Ruairidh Milne @ruairidhm.bsky.social Long Covid since March 2020.
“Nothing about me without me” - doesn't seem unreasonable.
Previously: health research, public health, technology assessment and appraisal
Also some Shetland!
Dormouse @dormousediaries.bsky.social Cartoonist, #BylinesNetwork, artist, occasional writer, and sketcher of things. Likes tea and books. Sometimes hibernates.
Living with #LongCovid
Profile picture: Dormouse in a teapot chewing on an ink-pen.
Banner: Cup, saucer and a dormouse with a pen.
Ravi Veriah Jacques @ravihvj.bsky.social Post-Covid ME/CFS since March 2021. Before then, a life I loved.
Stanford History | 2021 Schwarzman Scholar
James Glen @jamesglen.bsky.social Having a bit of a break O_o
● Founding member @LongCovidSupport
● Long Covid advocate #FBLC
● Watford FC fan
● #FBPE 🇪🇺
Chronic Illness Channel @chronicchannel.bsky.social Youtube Channel covering Chronic Illness, Universal Basic Income and Air Quality.
https://www.youtube.com/@ChronicIllnessChannel
Clean The Air http://bit.ly/CleanTheAirUK
Jen DressForME @jengovey.bsky.social I dress up in fancy dress for the charity Invest in ME Research to raise funds & awareness of Myalgic Encephalomyelitis. In a previous life I worked in film. I’m an advocate for good science, treatments & better healthcare for #pwME. 
Stephen MIA @stephenmia.bsky.social Former Skier, Cyclist, Climber, Hill Walker, Diagnostic Radiographer and functioning human. Now - ME, POTS, LC, Vax Injury - Pro Vax - Still finding the joy
Vlad Vexler @vladvexler.bsky.social Philosopher - ethics, politics, music | Slowly writing a book on Isaiah Berlin | Born in USSR, home is London | Living with ME since 2003.
youtube.com/vladvexler (main channel)
youtube.com/vladvexlerchat (chat channel)
youtube.com/@vladvexlerphilosophy
Scribbler Pen @scribblerpen.bsky.social Writer, editor, analyst. Disability employment rights advocate.
Trade union disability rep. Arts, science and languages nerd, internationalist, hiker, nature lover. Could really do without Long Covid
Anna Wood @annakwood.bsky.social Physicist, education researcher, gardener, bird watcher/photographer, chronic illness/ME
Dr Kate Cushing @drkatecushing.bsky.social Doctor, scientist, mum, cat slave.
Public Governor Newcastle upon Tyne Hospitals Trust
Long Covid & CCH.
Love Northumberland/Newcastle, owls/wildlife/books/art/music/politics/EU
Wrote Little Orange Book 4 parents of babies & small kids.
Green Party member
Clean Air Stars @cleanairstars.com Non-profit. Helping businesses better protect their customers from viruses like SARS-CoV-2. Fix your air with the guides cleanairstars.com/steps.
Air filter recommendation tool (non-profit) at filters.cleanairstars.com
Prof Deborah Lupton, MPH PhD @dalupton.bsky.social Prof, Arts, Design & Architecture, UNSW Sydney, Australia. Sociology of health and digital media research too. Personal blog: https://simplysociology.wordpress.com/
Prof Nisreen Alwan @nisreenalwan.bsky.social نسرين العلوان
Pronounced /nisri:n/ with an s not a z and a long ee ☺️
Professor of Public Health MBE
Southampton
Not afraid of my voice
Still curious
Posting my personal views not those of any organisation
Reposts not necessarily endorsements
💚 🧿 🌻
Steve Fifield @stevefifield.bsky.social Informed decisions & verifiable facts please, not opinion & belief. UK. 🇬🇧
Mine of occasionally useful information.
NHS and healthcare 💙
#Equality #Justbe #Inclusion
#LGBTQ+ 🌈 ally
#pwME
#MECFS
#Activetravel 🚲
#Sustainability
#Gardening
#VisibleApp
Christina Baltais @christinabaltais.bsky.social Artist exploring the intersection between art & advocacy, sharing my experiences living with ME/CFS
Jess Badger @jesshoneybadger.bsky.social Chaotic good writer and scientist with severe, bed bound MECFS. Writing wholesome stories, science stuff, and funny anecdotes from bed. Lover of memes.
jesshoneybadger.substack.com
#MillionsMissing Aus @mmissingaus.bsky.social There are #MillionsMissing from their lives due to ME (Myalgic Encephalomyelitis or #MECFS). We're fighting to make their voices heard. Sadly, many ppl with #LongCovid meet #ME diagnostic criteria - adding many more to the ME ranks.
Emily Ladau @emilyladau.bsky.social Author of "Demystifying Disability: What to Know, What to Say, and How to be an Ally." Disability rights activist who lives life on wheels. ♿️
Millions Missing Podcast @millionsmissingpod.bsky.social Share your story / Amplifying the chronically ill / #MyalgicEncephalomyelitis #LongCovid et al / #MillionsMissing / Contact: millionsmissingpodcast@gmail.com / linktr.ee/millionsmissingpodcast
MillionsMissingFinland @missingfinland.bsky.social ME/CFS G93.3 hoito & diagnosointi:
2021 Duodecim
https://rb.gy/m9spr
2021 NICE
https://rb.gy/h7eok
2021 Mayo Clinic Proceedings
https://rb.gy/fd54d
COVID-19 Long-Haulers Discussion Group @covidlonghaulers.bsky.social Raising awareness #COVID19 and #LongCovid Supporting fellow long-haulers. Join our group for support! (Human curated) Media: covidlonghaulers@gmail.com
#MedSky
facebook.com/groups/COVIDLongHaulers
YouTube.com/@covidlonghaulers
Patreon.com/BrookeLine
Disability Culture Lab @disabilitylab.bsky.social DCL is a nonprofit disability media and narrative lab, by and for disabled folks. We exist to dismantle ableism and celebrate disabled community and culture.
https://linktr.ee/disabilityculturelab
dr. thrasher, an american writer in ex(archia)(xile) @thrasherxy.bsky.social Author of THE VIRAL UNDERCLASS & THE OVERSEER CLASS. Once won the Cambridge Union Debate Society. Twice sold out The Strand & programmed film series at BAM. Pulitzer Center Global Reporting Fellow. LitHub essayist, Intercept reporter.
Accessibility Awareness @a11yawareness.bsky.social Helping you better understand web accessibility for people with disabilities. Created by @patrickmgarvin.bsky.social.
Fran H @franhaddock.bsky.social Severe ME | Activism from bed | Small joys
She/her
MEdicalGaslighting @medicalgaslighting.bsky.social Exposing medical gaslighting. Advocating for ME/CFS awareness & justice. Disrupting neglect, demanding change. Voices ignored, now amplified. #pwME #MECFS #millionsmissing #GreatestMEdicalScandal
Cranky Queer Guide to Chronic Illness @crankyqueer.bsky.social #Queer and #trans #disabled people have always had to find new paths for our survival
#Illder storyteller and strategist: http://thecrankyqueer.substack.com
#PandemicsAreChronic
❤️T4T❤️Mask4Mask❤️ #FBLC
Vilissa Thompson @vilissathompson.bsky.social #DisabilityTooWhite Creator • Founder of Ramp Your Voice!, LLC • #Disability_Rights #Consultant • Social Worker • #Writer
https://www.rampyourvoice.com/
https://www.vilissathompson.com/
http://patreon.com/RampYourVoice
Solve M.E. @solveme.bsky.social Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid, and other infection-associated chronic conditions.
@suddendeparture.bsky.social @suddendeparture.bsky.social @suddendeparture on IG
Disability justice &
Long COVID advocacy
Malka_G @malkag.bsky.social Writer/editor. Chronically ill. Slowly working on setting up this account.
Hoping to reconnect with #NEISvoid, #DisabilityTwitter, #CovidIsntOver, #StillMasking, etc.
Quella 🐙 @quellaisstilldizzy.bsky.social Chronic Illnese and Disability education and advocacy. 🐙
Severe MECFS warrior with Long Covid, Dysautonomia (POTs and low blood volume), Fibromyalgia, Endometriosis, Depression.🐙
Medical researcher + Medschool Dropout 🐙
UK Charity Invest in ME Research @investinmeresearch.bsky.social An independent UK charity finding, funding, facilitating biomedical research into ME and providing better education and awareness of this disease in UK & Europe
(charity nr. 1153730)
www.investinme.org
Graeme Murray @gmuzz.bsky.social Looking for a quieter life away from X.
20+ years in #sustainability and still fighting the good fight. Also championing / struggling with #mentalhealth and #MECFS since 2017. #PwME.
Might even mention #LFC occasionally. #YNWA
Feel free to connect. 😁
Henriëtte @henrietteraap.bsky.social Leef met #longcovid sinds 2021 en probeer er het beste van te maken. Vanuit huis focus op duurzaam leven en praktische oplossingen. Weet veel van geldzaken. Blijf hopen op verbetering.
Dutch 47, #longcovid since 2021.
Pamela PhD @pamelaraasen.bsky.social Psychologist, lifelong activist for women’s issues, peace and social justice, 40 yrs with ME from Incline Village, fight the good fight and make good trouble, here to create the Beloved Community, San Francisco East Bay transplant from MN.
Stéphane Bilodeau @smbilodeau.bsky.social Engineer, PhD, FEC, CTO Smart Phases
Adj.Prof. Bioengineering @mcgill.ca
#Climate #Health #CleanAir #IAQ #Resilience #Science #AI #COVIDisAirborne #ClimateEmergency #Renewables #Green #Quebec #Sustainability #IBEC #WHN
Fighting Entropy Continuously!
Paul Mc Daid @paulthedaid.bsky.social Self-published children's author - https://amzn.eu/d/iXEmQFG
ME/CFS patient and advocate.
Long Covid Patient Action UK @longcovidactionuk.bsky.social Was LC_UK_ACTION on the other place.
Trying to rebuild community.
LC since Dec 2019. Disabled. Masking.
#CleanAir #LongCovid 
Sebas @sebajones.bsky.social Long covid/ME since 2020. Literary fiction and em dash fan. Retired junglist. 🪴 patient.
Guiri madrileño. Socialista. Anti-fascista.
JustMe @justmegi.bsky.social Trying to survive the polycrisis #DisabilityJustice #CovidIsAirborne #LandBack #BlackLivesMatter 
Eliza James @elizajames.bsky.social n95’s + HEPA’s | Long COVID | MECFS
Our leadership & medical providers have failed us on c19
ANTI-profit-over-people
Jayne Starkey @jaynestarkey.bsky.social Retired Widow Democrat Politics Trump added 7.8Trillion to debt his 1st term Climate Ukraine Women’s Rights Justice Truth Tree lover Me/cfs STRESS KILLS🚫DM’s
N Jackson @njackson.bsky.social Pastafarian minister, drinker of beer, Covid conscience, drinker of beer.
K Comalli Dillon @timbre440.bsky.social Former fine violinist, disabled, medical editor, queerdo, feminist, Francophile, Californian, buddhist. DM = block. 🏳️🌈🏳️⚧️♿️ 😷; #medsky; Covid is airborne; prosecute ICE. #BlackLivesMatter!
Jen Steinmeyer @jenifers.bsky.social Parent, believer of science, Covid is not over, wear a damn mask.
waysailor @waysailor.bsky.social Former documentary video maker living with moderate MECFS. Finding a way, one sketch a day. 🏳️🌈
Simon Spichak @spichaksimon.bsky.social Neuroscience MSc
🦔 dad
Founded Resolvve Inc to make therapy affordable for students
Science, health and tech journalist published in Being Patient, NYT, The Guardian's Scientific Observer, The Sick Times, and The Daily Beast
Covid Long Haulers Podcast @longhaulerspodcast.bsky.social We’re a community of Covid longhaulers who have been brought together by this illness. We share the stories of folks who have been through it, who are going through it, and how they’re surviving it. #LongCovid #CovidIsntOver #CovidIsAirborne #CovidSky
Owl Rivers @sparrivers.bsky.social long covid since 2023 & covid awareness, formerly outdoor enthusiast (kayaking, hiking, camping)
Randi Chance @randi615.bsky.social ME/CFS for over 3 decades. JAFF (Jane Austen Fan Fiction) is my jam. Don't know what I would do without my Christian faith and my husband and daughter.
PamC @pammckc.bsky.social Mom, wife, engineer, ice cream addict. Trying to focus on what I still can do versus what I can’t while sidelined with dysautonomia from Covid.
Anais @anais3.bsky.social Long covid January 2020
Brenda @bcmaguire.bsky.social 🇨🇦 Leftist poli nerd migrating from the bird app. Covid Conscious. Rescue Dogs. She/Her. #NeverPoilievre
Adriana P. LongCovid Canada Collab. @longcovid-adri.bsky.social Lead of LC3 FB grp. LOVE animals/nature. Former int. Competitive swimmer. Disabled by #LongCovid since Xmas 2020. #Covid #MECFS evidence-based advocate 🇨🇦🇲🇽. #FBLC We must #Unite2Fight stronger together in this chaos! #MaskUp 🖤🤘
Bateman Horne Center @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.
Rivka Solomon @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
David Kaufman @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. 
Winslow Santé Publique @winslowsp.bsky.social Association de lutte contre le COVID composée de personnes vivant avec le COVID Long et de personnes handicapées et/ou malades chroniques.
👉 https://winslow.fr/
📧 winslowsantepublique@proton.me
Elly Brosius, MS @ellybrosius.bsky.social Pets, nature, physics, health, sewing, crafts, ME/CFS/OI/LC science & symptoms, medicinal metaphors, gratefulness practice. Volunteer for Renegade Research including R50, NoVA ME/CFS, OI & Long Covid Support Group, MEAction NC.
heather @heatherfeather.bsky.social heather 🍋
saskatoon
sick&disabled (me/cfs) gay trans woman
she
31
- - -
i'm a former "essential worker" dealing with long covid caught in 2020. if you feel like helping a broke bitch, https://paypal.me/gaaaaay
Kay Elle N95+ @kayelle.bsky.social I do what my dog says💙🐶
She/Her
Driven by Compassion, empathy & love, always💙longCovid advocate💙🏳️🌈🏳️⚧️Ally
⚠️covid is neurotropic & vascular⚠️N95+CleanAir+💉
Living in reality via facts & peer reviewed studies.
Jo Malivoire @plummischief.bsky.social Writer, reader, dreamer
#MECFS #POTS
Ragnhild von Harling Lien @rvhlien.bsky.social Trying to stay informed, but...😅
M.E. stole most of my life.
Feeling happy about 97% of the time 😄
Alexis Gilbert @alexisme.bsky.social Medically retired due to M.E. Previously Consultant in Health Protection, FFPH (2020) MPH MBBS BSc | Severe ME, Long Covid and POTS patient | Global health
Most active on IG stories: https://www.instagram.com/alexis___me/
Michiel @murtoz.bsky.social Horizontal advocate for #pwME. 🇳🇱 in 🏴.
Ally. Cis. PwME/LC. Volunteer with @meactionscotland.bsky.social. He/Him. #SaveSavannah #BIPOCLivesMatter #TransLivesMatter #EndGenocide #CovidIsAirborne #YallMaskin #CleanTheAir
Claire @clairabelle.bsky.social Mostly a lurker as I have pretty severe cognitive dysfunction these days, please be nice if I do post. ME/CFS, disability and chronic illness. Used to be a bioscientist. PhD. She/They
Edith CL @edithcl.bsky.social #longcovid #MEcfsally #mèresaufront #féministe #citoyenneengagée, idéatrice congrès #ecologiedelenfance