Co-lead & patient-researcher @patientled.bsky.social. Biologist, PhD. Brasileira.
Pharmacist interested in Long COVID and ME/CFS research
Pro-mask, pro-clean air!
Substack: https://pharmd.substack.com/
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
Immunologist and ME/CFS researcher @Charité
https://cfc.charite.de/
#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
https://bio.site/longcovidphysio
• 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
Neurologist and more. https://www.atria.org/doctors/dr-ilene-ruhoy/
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.
Riverside, CA
Equine History Collective
Renegade Research
https://katboniface.wordpress.com/the-glutamate-boss/
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/
Living with ME/CFS since 1991. Here for the long haul. I am one of the #MillionsMissing.
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
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
501(c)3 transforming how #LongCovid, #ME/CFS & Lyme+ are studied, diagnosed, and treated. Leading the #LongCovid Research Consortium.
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/
Distinguished professor, Stellenbosch University and Honorary professor, University of Liverpool.
~ 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
https://renesugar.substack.com/
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
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 ♿
🔵 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
We study antiviral immunity and viral disease pathogenesis. We are developing mucosal vaccine strategies to prevent infection and transmission. #COVID19 #longCOVID #vaccines
US ME patient advocate. Mother of a son and his wife who have ME and Long COVID. My other focus is on US politics and what's coming
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
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.
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
#TeachMETreatME #hEDS #MyalgicEncephalomyelitis #MESpine #CCI #POTS #longCovid #AuDHD #endo • Capitol Hill, AFL-CIO, and AFT alum • She/her
#JohnVsJonVsME campaign to get John Oliver or Jon Stewart to bring the awful history of #MyalgicEncephelomyelitis #GreatestMEdicalScandal to light
JohnVsJon.com
Molecular biologist and science educator putting science in your hands as President of @TheScienceHaven. All views are my own. Also known as Dr. Raven the Science Maven :)
Science journalist with long covid. Former staff at Science Magazine, Science News, C&EN, Chronicle of Higher Education. Now full-time patient.
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled.
E: frances.ryan.freelance@guardian.co.uk
Salty | #LongCovid,#POTS & #ME | Books, Music, Food, Art #ATXRE | Excuse my typos
We are living in a choose-your-own dystopian novel
† doktora | research+policy | perpetually horizontal
ID’s: Brown skin woman w/ curly hair, wearing a brown tube top, smiles. Banner - Sepia picture of a couple getting married w/ family around them.
vashetc.com | restandmecfs.com | survivorsandallies.com
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
🔴 Membre de World ME Alliance.
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. 💖
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.
I enjoy cats and bicycles. I much less enjoy my chronic illnesses. #pwME
@wandering on Instagram ✍🏻
Disabled with Long Covid 51+ months
Long COVID Researcher @sfu-fhs.bsky.social
Master’s Student @sfucmns.bsky.social writing on biopolitics & Long COVID
kaylijamieson.notion.site/research
Author of IN GOOD HEALTH: Uncomplicated, Allergen-Aware Recipes For a Nourished Life
instagram.com/the.rachel.riggs
#EDS #MECFS #Food
#paleo #glutenfree #dairyfree
ME patient, art appreciator, advocate, mother.
One of the #MillionsMissing with #LongCovid #MECFS JohnVsJon.com // Once a radio and podcast producer, always a Transom alum
😷 Long covid is common 😷
I'll "tweet" here about the things I don't like if the other app goes down
Long COVID patient-researcher
@ Scripps Research & Patient-Led Research Collaborative
DMV native. COVID long hauler. Patient-Led Research Collaborative.
#AssociateProf #CompBio #Omics #WomenInScience #LGBTQ+Ally #Scottish #PrecisionMedicine #HealthCare #MDx #ME/CFS #RareDisease #Informatics #SciFiNerd #LongCovidAffected
sites.uab.edu/cgds/ she/her
Long Covid, ME/CFS, POTS…. For now
#Nonprofit clinical #research providing 2-day #CPET #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses. workwellfoundation.org
MD | rheumatology resident
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
National nonprofit led by people with lived experience helping families navigate pediatric Long COVID with support, resources, and advocacy.
#MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation 😷
• Scientist ‖ PhD mathematical physics (not MD) ‖ Dr. rer. nat.
• Interests: Medicine ‖ History ‖ Global Politics
• #MECFS ➡️ http://mecfs.de/was-ist-me
• EN ‖ PL ‖ DE
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
#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
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.
Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.
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
The first charity supporting & advocating for children & young people with Long Covid & overlapping illness.
#LongCovidKids #LongCovid #PaediatricLongCovid
#LongCovidAwareness #MECFS
Theater/film/music/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.
creator of longcovidstudies.net, member of the Patient-Led Research Collaborative, and freelancer.
Parisienne Buffalonian linguist spoonie mom. http://bcopley.com "The line separating good and evil passes...right through every human heart." -Solzhenitsyn
Husband & Dad. ICU Doc. Vanderbilt. @CIBScenter studies Covid & Long Covid, ICU Survivorship, Dementia, Delirium, PICS. Fighting misinformation. Posts my own. Still learning.
angry mast cells (HaT and #MCAS) + #POTS + neurodivergent. ♿ queer. white. emperor of typos. brain fog zone ⚠️. they/them
🎶 iii'm still masking 🎶
working on porting more of my body science infodumps and such to:
liminalnest.wordpress.com
#NEISvoid
Immunoengineer at MIT BE developing predictive diagnostics. Captivated by #inflammation, #SexDifferences #Lyme, #COVID, #IACI, #IACC and #onehealth. Mom of 2. prev/ PhD in Immunology @Yale; PostDoc @Stanford
https://talresearchgroup.mit.edu/
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
staff writer @newrepublic.com / author A WOMAN IS AGAINST THE LAW (@littlebrown.bsky.social, 2KTK) + PLAYING THE WHORE (Verso)
// melissagiragrant.com
» melissa@melissagira.com
» tips (encrypted): melissagira.01 on Signal
@nyguild.bsky.social member
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.
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.
Derailed by #MCAS #hEDS #MEcfs #Dysautonomia #GravesDisease
Animals deserve better.
Missing Ireland.
Writer at ElizabethMilo.com
#MaskUp
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
Audiobook Narrator. Writer. Singing songs and smirking. She/her. hEDS, POTS, ME/CFS
immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
Caregiver. #mespine #cci #eds #mecfs
Professor & Chair of Rehab Med in SATX | Mom, runner, #LatinasInMedicine, #Physiatry, #LongCOVID
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/
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
editor/co-founder @thesicktimes.org | journalist covering Long COVID & related crises | she/her/🏳️🌈
email: betsy@thesicktimes.org | signal: betsyladyzhets.25 | https://thesicktimes.org/
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.
Disability Justice
Living with ME, EDS, POTS, MCAS, vascular compressions, spinal comorbidities & more
Ambulatory wheelchair user
Cozy gamer, lazy gardener, hopeful baker
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 🤓
Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
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
OMF is fundraising to support open, collaborative research to find effective treatments and a cure for ME/CFS, Long COVID, and related diseases.
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
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
Patient-Led Research for #LongCovid! http://patientledresearch.com
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
Not-for-Profit Organisation supporting Australians living with ME/CFS (mylagic encephalomyelitis / chronic fatigue syndrome) and long COVID.
Education | Research | Advocacy | Support Services
Website: www.emerge.org.au
Donate: www.emerge.org.au/donate/
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
Mad mastcells and petulant PEM from Long Covid.
More precisely, LC of the subgroup MEcfs and MCAS.
The Bateman Horne Center is a medical center of excellence for people with ME/CFS, Long COVID, fibromyalgia, post-viral illness, and comorbid conditions.
Expressive Arts + Trauma Healing + Brain Health + Fascia + Movement + Healthcare + Aging + Faith + Tech + Innovation Pioneer Catalyst Connector
(was @HealthcareWen @CATALAIZE on the bird app)
Patient/Caregiver-led nonprofit 501c3 focused on #MECFS and #LongCovid • https://Renegade-Research.org 💙 Runs project @remissionbiome.bsky.social • Donate now ▶️ https://tinyurl.com/44azdsxm
M.E. since 1976. In the golden rolling hills of California.
Looking at screens sets my eyeballs on fire so there will be pauses.
Stay-at-home-astronaut. Believer in cheese. Type-A goofball. Public health and women’s health policy nerd. Resident of a desert island of misfit toys (aka New Mexico).
Sick Bound: Life from bed with ME/CFS and Long COVID. A blog by Rosemary Harper.
Coming soon!
