Ladonna @ladonnadonna.bsky.social (very) severe ME, POTS, MCAS, Fibromyalgia
music sound &
https://soundcloud.com/ladonnadonnadonna
https://xquisitereleasess.bandcamp.com/album/ladonna-a-single-wish-xqu013
LLC @liesllr.eurosky.social LET LOVE RULE! Talking about my daily struggles and thoughts ‘living’ with Long Covid, PEM & POTS in Amsterdam.
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
A (she/her) @forcedevolution.bsky.social Just trying to survive and make this place a little less hellscape-y for my kids and all the other kids.
atypicalHippy @atypicalhippy.bsky.social #ADHD Dx Jan 2021
#LongCovid / #PEM / #POTS Jan 2022
#Aphantasia Bi 53yo
pronoun averse, but he/him
I mostly use social media in relation to neurodiversity and disability, but sometimes get caught up in a bit of politics.
Lumia @wearlumia.bsky.social What you feel is real. Lumia tracks blood flow to the head. Designed for #pots #orthostatichypotension #syncope #longcovid #myalgicencephalomyelitis #fainting #dysautonomia #chronicillness Currently for USA, iPhone, and adults 18+ only. www.lumiahealth.com
Yann (ME/LC) @me-cfs.bsky.social Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak.
I care.
Ⓐ💚, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
Omar Wasow @owasow.bsky.social Asst Prof, Berkeley, Political Science: 1/ Agenda Seeding http://j.mp/agenda-seeding 2/ Race as a Bundle of Sticks http://j.mp/bundle-of 3/ Text as Behavior https://cup.org/4cUmoXi 4/ Plutopopulism http://cup.org/4cfm0Az
zeynep tufekci @zey.bsky.social It is said that there may be seeming disorder and yet no real disorder at all
George Monbiot @georgemonbiot.bsky.social Ungainly on land
tern @1goodtern.bsky.social truth, science, hope
World Health Network @thewhn.bsky.social Bringing people, science, and compassion together to solve world problems and protect health. Let's #EndThisPandemic together.
C.H. Romatowski @romatowski.bsky.social Editor, translator, filmmaker. Recovering academic. Leftist. Perfumista. ME/CFS, MCAS, POTS. EN/FR. She/they. DMV. More some days than others.
Laura Miers @lauramiers.bsky.social Chronically ill, LongCovid since 2020. Public health advocate and lived experience expert. Ex-Texan. Medicine, languages, Sociology, & law. Global citizen & polyglot.
Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social Respiratory and Sleep Medicine
Neurobiology and Long Cövid
Vice President of ISLC & PAIS
ME/CFS News @mecfsnews.bsky.social News, interesting information and commentary on ME/CFS.
Physios For ME @physiosforme.bsky.social A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME
Find out more at physiosforme.com
Dr Elisa Perego @elisaperego78.bsky.social #LongCovid | researcher | Covid | infectious disease | health, disability, inequality in present and past | human-environment interactions | big data | medicine history | patient-led research | MA PHD| ≠ MD |
Anil van der Zee @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
Whitney Dafoe @whitneydafoe.bsky.social Severe ME/CFS patient and advocate. Writer, photographer, filmmaker. artist, activist, creative. Bedridden since 2013 sick since 2004. Never. Giving. Up. ✊
Katharina 🦋🍋🍀 @katha1970.bsky.social Here for research and info on #Migraines #MECFS #LongCovid #MCAS #MCS #ChronicPain #MetabolicHealth #Neuroscience #Psychology #MedicalGaslighting, posts German & English, hobby songwriter
Neurologist Mom @neurologistmom.bsky.social A neurologist, M.D., mother of a 18-year-old with #Lupus #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
📍Seattle, WA
Colleen Steckel @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
Bettina Grande @bettinagrande.bsky.social Psychological psychotherapist | Heidelberg & Charité Berlin
Advocacy against psychologization of #MECFS, #PEM & #PENE
Research & psychotherapy
adapted to ME/CFS
Psychotherapie-Netzwerk ME/CFS
https://doi.org/10.3390/medicina59040719
Herbert Renz-Polster @renzpolster.bsky.social physician-researcher, paediatrician, ME/CFS since 2016. This account is about science, esp. CFS
Jennifer Brea @jenbrea.bsky.social 
PhillyPhile215 @phillyphile215.bsky.social Just a Philly girl, livin' in a lonely world…and a Luddite learning (now) to BlueSky. #LongCovid since March 2020
Renegade Research @renegaderesearch.bsky.social Patient-led 501c3 nonprofit focused on #MECFS & #LongCovid 💙 https://linktr.ee/renegaderesearch • Runs @remissionbiome.bsky.social- L Efthymios Kalafatis @lifeanalytics.bsky.social Data Scientist, Patent owner of Artificial Intelligence-assisted methodology for Medical Research Discovery. Tweets are mine/not medical advice or endorsements.
UniteToFight @unitetofight.bsky.social LongCovid & ME/CFS conference project. We’re a small group of affected people living with LC & ME/CFS, alongside dedicated supporters.
#UniteToFight2024
www.youtube.com/@unitetofight2024
Beth #MillionsMissing @bethmazur.bsky.social #pwME and science/data nerd. co-founder #MEAction. Mostly post about #millionsmissing, #MEcfs, #LongCovid, #microbiome, #MCAS, #POTS, #citizenscience, and #healthequality. CS @MIT
Jon Douglas @atranscendedman.bsky.social Transparent to the transcendent.
Building TrialPilot - https://www.trialpilot.app/
https://fnih.org/patient-engagement/patient-voices-fnih/long-covid-struggle-inspires-urgency/
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. 
BlueZebra @bluezebra30.bsky.social M.E. since 1976. In the golden rolling hills of California.
Looking at screens sets my eyeballs on fire so there will be pauses.
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social I am researching treatments for my daughter, who has hEDS, ME/CFS and other conditions, with implications for #EDS, #MECFS and #LongCOVID. I am a researcher, but not an MD.
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
Fatigatio e.V. - Bundesverband ME/CFS @fatigatioev.bsky.social Wir unterstützen Menschen mit ME/CFS (Myalgische Enzephalomyelitis / Chronisches Fatigue Syndrom) und setzen uns seit 1993 für Versorgung, Forschung und Aufklärung ein.
Größte deutsche Patientenorganisation mit gut 3.000 Mitgliedern. 
ME/CFS Science @mecfsscience.org In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic.
https://mecfsscience.org/
Dialogues ME/CFS @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. 
Ö. Ges. für ME/CFS @mecfs.at 💛 Österreichische Ges. für #MECFS
⚡ NEWS zu #MECFS #pwME #myalgicE
👇 Informationen, Spenden, Kontakt
http://linktr.ee/oeg_mecfs
https://mecfs.at/
Dt. Ges. für ME/CFS @dgmecfs.bsky.social ME/CFS ist eine schwere körperliche Erkrankung, die bisher kaum erforscht ist. Wir setzen uns für die Interessen der Erkrankten und mehr Forschung ein.
mecfs.de
#MEAction Michigan @meaction-mi.bsky.social Welcome to the Michigan State Chapter of #MEAction!
MEAction UK @meactionuk.bsky.social Our movement fights for recognition, education, and research so that one day all people with ME (myalgic encephalomyelitis) will have access to rapid diagnosis, and compassionate, effective care. 
#MEAction Scotland @meactionscotland.bsky.social 
Long Covid UK @longcoviduk.bsky.social Long Covid UK is a charity working to reduce the impact of Long Covid and improve the lives of all affected.
Long Covid UK is a working name of Long Covid Support (Registered Charity in England and Wales: 1198938 | Company: 13422248)
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
Long Covid Resource @longcovidresource.bsky.social The Long COVID Resource is dedicated to providing information and resources on Long COVID and summaries of studies.
Long COVID Resource: https://longcovidresource.com
Long Covid SOS @longcovidsos.bsky.social UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rights
www.longcovidsos.org
info@longcovidsos.org
Charity reg no 1199120
Marie Jobin @whywhy.bsky.social Doctor in psychology, proud participant of #RemissionBiome first cohort, #EDSh #MCAS #ME/CFS. The pandemic is not over. #CleanAir #MaskUp #StandWithUkraine #StopGenocideInGaza
Mady Hornig, MA, MD @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
loscharlos @loscharlos.bsky.social 😎🌁🎷 #LongCovid March 2020 😵💫
Mike Y @longhaulerbear.bsky.social Mike Y, 50, San Diego USA. Interests: Long Covid, ME/CFS, #RemissionBiome
https://linktr.ee/longhaulerbear
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
@jencurtinmd.bsky.social @jencurtinmd.bsky.social Physician. Entrepreneur. Nerd. 🍊YCW22. RTHM co-founder. Recovered ME/CFS. Treated infection assoc illness b4 Covid. Tweets/DMs are my own & not medical advice.
C.H. Romatowski @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 severely ill (FUNCAP 0.9). No unsolicited advice please!
Julie Rehmeyer @julierehmeyer.bsky.social Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. I mostly write about complex chronic illness and math. Bylines in NYT, WashPost, Discover, Wired, Slate, Stat News, Science News, lots more. She/her.
Ed Yong @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
Karla Monterroso @karlaliliana.bsky.social Part chaplain, part cross-pollinator, part coach, part builder. Multiracial multicultural institution dreamer. Brava pero vulnerable.
www.bravaleaders.com
Miles W. Griffis @mileswgriffis.bsky.social Co-founder/editor @TheSickTimes.org
Columnist @HighCountryNews.org
miles@thesicktimes.org #LongCOVID
The Sick Times @thesicktimes.org Award-winning nonprofit news site chronicling the #LongCOVID crisis. Founded by @BetsyLadyzhets.bsky.social & @MilesWGriffis.bsky.social
Website: thesicktimes.org
Newsletter: thesicktimes.org/newsletter
Donate: the-sick-times.fundjournalism.org
It's ME(Jaime) @exceedhergrasp1.bsky.social Scientific Director, #MEAction
Affiliations: Stanford Genome, Université de Montréal
TIME100 Health
#ME, #EDS, #POTS, #LongCOVID
Views my own
Hannah Davis @ahandvanish.bsky.social Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
Dan Wyke @danwyke.bsky.social Severe M.E., person-centred counsellor (not practicing), recovering poet (Rack & Waterloo Press)
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
#MEAction Network @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
Stephanie Grach M.D. M.S. @grachstephanie.bsky.social Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
Lisa McCorkell @lisamccorkell.bsky.social formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
Brianne Benness @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
Julia Métraux @juliametraux.bsky.social Disability Reporter @ Mother Jones • jmetraux@motherjones.com • She/her • Berkeley Journalism alum • Signal: @juliametraux.49
Author page: https://www.motherjones.com/author/julia-metraux/
Free monthly newsletter: https://bit.ly/4tUXg9r
Richelle Sepulveda @richellesepulveda.bsky.social Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
Billy Hanlon @bhanlon15.bsky.social ME/CFS | Long COVID | IACC
S💿phie CD @sophie-cd.bsky.social Australian, Cypriot & Greek anti-disease designer existing in Berlin. Been to hell & back thanks to the pandemic. check @sophsoph.psd & @berlin_buyers_club on the gram 🤓
Whitney is Wicked @itswhitneywitch.bsky.social Disability Justice
Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more
Ambulatory wheelchair user
Cozy gamer, lazy gardener, hopeful baker
Wendy Kloiber @wendykloiber.bsky.social So did the divine right of kings. Long covid class of March 2020, the kind with ME. Would like one more tattoo, minimum. She/her. Ashland, WI —> MSP.
betsy ladyzhets 😷 @betsyladyzhets.bsky.social editor/co-founder @thesicktimes.org | journalist covering Long COVID & related crises | she/her/🏳️🌈
email: betsy@thesicktimes.org | signal: betsyladyzhets.25 | https://thesicktimes.org/
María Richardson @diatoma.bsky.social Ella/she/her. I write, I read, I draw plants. Chronically ill en la Ciudad de México. #ME #MECFS #POTS #LongCovid
Long COVID Justice @longcovidjustice.org We are leading grassroots efforts to confront the Long COVID crisis, while centering racial, social, economic & disability justice. Our work is done by and for chronically ill & disabled people, our families and communities. linktr.ee/longcovidjustice
Brian Vastag @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/
Angela MV (she.he.they) @angelamswinca.bsky.social 🦠😷♿️#LongCovid disabled | 📢 fmr prez Body Politic | 🏠LAX | ⚖️health justice | ✊🏽✊🏾✊🏿racial justice
alt text profile pic: tan skinned person in a tan KN95 mask and suit, dark wavy hair with short bangs
Monica Verduzco-Gutierrez @mvgutierrezmd.bsky.social Professor & Chair of Rehab Med in SATX | Mom, runner, #LatinasInMedicine, #Physiatry, #LongCOVID
Karen Lubell @karenlubell.bsky.social Caregiver. #mespine #cci #eds #mecfs
elle carnitine 🪳 @ellecarnitine.bsky.social immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
Kira Stoops // Imperfect Working Order @imperfectkira.bsky.social Sick bish living richly. ME/CFS+ https://imperfectworkingorder.substack.com/
Debra Guckenheimer, PhD @debraguckenheimer.com Writer, activist, artist, teacher, sociologist, 🥄 , neurodivergent, disabled, queer, single mom.
🏳️🌈 Pronouns: she/they
debraguckenheimer.com
#livingwithableism #resist
DanielleMors @daniellemors.bsky.social Audiobook Narrator. Writer. Singing songs and smirking. She/her. hEDS, POTS, ME/CFS
Caroline Elizabeth Christian @carolinechristian.bsky.social Professor #ssu, writer, mother disabled by #hEDS #MECFS #LC; I write a blog called Frozen in Amber about the science of and lived experience w/ #hEDS #MECFS #LC | chronicallycaroline.com
Elizabeth Milo @akaemilo.bsky.social Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease
Animals deserve better.
Missing Ireland.
Writer at ElizabethMilo.com
#MaskUp
Megan Hooker @meg01.bsky.social Lover of the smell of rain in the desert, free flowing rivers, a good monsoon storm and veggie gardens. Perpetual student of Feldenkrais and Organic Intelligence. Former river advocate on a life detour from ME/CFS. 
Yr buskined mistress & yr warrior love @rhymeswithvery.bsky.social ACT I: Books, bookstores, publishing, the Bay Area, my dog, trees, rocks, crows, large bodies of water. ACT II: #FcktheNIH, post-vaccine syndrome, #ME, other new health disasters, good people, disability justice. ACT III: 
steffi @mecfshawaii.bsky.social Patient Advocate / pwLC / Caregiver to pwME 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
Post-Viral Trials @postviraltrials.bsky.social News and information about interventional trials for Long Covid, ME/CFS, POTS, and other post-viral illnesses. Message or tag me if you’re in a trial or otherwise have information to share.
Melody Schreiber @melodyschreiber.com Health contributor/reporter at Guardian US, contributing editor at the New Republic, freelance elsewhere. Arctic obsessive and book enthusiast.
Send me your secrets:
Signal: melodyschreiber.06
Email: melodyschreiber@proton.me
Newsletter: notadoctor.news
Melissa Gira Grant @melissagiragrant.com staff writer, @newrepublic.com // author, A WOMAN IS AGAINST THE LAW (2KTK, @littlebrown.bsky.social) + PLAYING THE WHORE (Verso)
// melissagiragrant.com
» melissa@melissagira.com
» tips (encrypted): melissagira.01 on Signal
@nyguild.bsky.social member
Jodi Ettenberg @legalnomads.com Once a lawyer, then a celiac travel writer. Now disabled, writing about curiosity & health.
Travel writing & gluten-free guides: legalnomads.com
The best things I read each month: jodiettenberg.substack.com
MCAS, meditation, & health: jodiettenberg.com
Merve Tepe, PhD @mervetepephd.bsky.social PhD MICROBIOLOGIST
AMR, Biofilms, Phage Therapy, Drug Design and some other similar topics 🤫🔜
@remissionbiome.bsky.social team
@renegaderesearch.bsky.social volunteer
DEFEND SCIENCE, RESIST IGNORANCE 🚫
#SonKale06
Ankara
Sabrina Poirier @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
Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social PD Dr. (religion, empirical education research)
mother of Mila who suffers from very severe ME/CFS (Bell 0)
https://milaandmecfs.files.wordpress.com/2022/05/mila-spiegel.pdf
Vienna, Austria
#CleanAir