#MEAction Network
@meactnet
A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing
linktr.ee/meactnet
ID: 2501259470
http://meaction.net 17-05-2014 10:54:10
25,25K Tweet
19,19K Followers
2,2K Following
Tom Kindlon
@tomkindlon
With ME 36 years (30 yrs severe). 95% of posts on #MEcfs/#LongCovid/#chronicillness. 26 publications in peer-reviewed journals. @IrishMECFSAssoc trustee 28 yrs
Washington Post Live
@postlive
Titans. Newsmakers. Game Changers. The conversations you won't hear anywhere else.
Andy Reed
@andyjreed_obe
Strategic Advisor @sajeimpact Former Labour MP for Lboro. Chair - Leics Business Board @Llepnews @sfdCoalition @activellr @sport_thinktank
Germán Luis Parodi
@glparodi
Co-Executive Director (PIDS)▪️UNDRR Alternative Focal Point for People with Disabilities in North America▪️Philly ADAPT Organizer▪️🇵🇷
Dysautonomia Intl.
@dysautonomia
Dysautonomia International is a 501(c)(3) non-profit that raises funds for research and promotes awareness of disorders of the autonomic nervous system.
Jennifer Hulme
@jenniferhulme
Physician, Assistant Prof @UofT Family & Community Medicine | Health systems | Health equity | Health in all policies | Long COVID/ME/POTS. Tweets are my own
Giada Da Ros
@giada_da_ros
TV critic; President of the CFS/ME Italian Association (and CFS/ME patient since 1990); Socratic.
Dom Kelly | thetattooedjew.bsky.social
@the_tattooedjew
i’m no longer active on this fuckass app. find me elsewhere 🫶🏼
Amazon One Medical
@onemedical
A healthcare experience designed around you
Bhupesh K Prusty
@bhupeshprusty
A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Kelly
@broadwaybabyto
Disabled & chronically ill writer. Former theatre critic. Clean air is a human right & vulnerable people aren’t expendable. When you know better - do better. 😷
Hannah Davis
@ahandvanish
Research, algorithmic music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled. DMs rarely checked
Disability Rights Florida
@disabilityrtsfl
Providing free and confidential Protection and Advocacy services statewide to people with disabilities for 40 years. Call 800-342-0823 to request assistance.
A 😎 Long Covid + MECFS Billboards
@aaronca11
@lcmebillboards @lcmepirates notrecovereduk.org
Eve Holt
@evefrancisholt
Head of Policy & Implementation @GreaterMcr @MayorofGM 🐝 Navigating, connecting & galvanising systems. Public policy, service & participation. #SocialJustice🌍
Anil van der Zee ©
@anilvanderzee
Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #IACC #art2cureME #pwme #millionsmissing
Caring Across Generations #CareCantWait
@caringacrossgen
A movement of caregivers and care recipients working to better care systems so everyone can live, work, age, and parent with dignity. #CareCantWait
Dan Wyke 🦠➡️🧠🔥
@dan_wyke
M.E. inactivist, person-centred counsellor (see link), recovering poet (Rack & Waterloo Press)
Katie Klocksin, by the wayside
@katieklocksin
😷 LONG COVID IS COMMON 😷 Radio +podcast producer, one of the #MillionsMissing with #LongCovid #MECFS / @transom_org alum
Swiftsandswallows
@swiftsswallows
@swiftsandswallows.bsky.social My daughter had Severe ME/POTS & MCAS and died in 2024 I am also a parent and carer of a younger daughter with ME & POTS
Diane Sheehan
@diane_sheehan
I block racists/trolls/bots
davidtuller
@davidtuller1
Senior Fellow in Public Health and Journalism, Center for Global Public Health, UC Berkeley. My academic position is largely funded by donations from patients.
HealthCommunication
@comm_in_care
Collaborating to promote skilled communication and attention to values for safe and compassionate health care. Since 2011. #RelationshipCentred
CJ Janzen
@cj_janzen
CJ Janzen is an award winning speaker who combines story, song, and insights on how to a live joyfully Resilient life!
bothered black girl (@botheredblkgirl.bsky.social)
@ifuekonadine
26 (She/Her) Always Feeling Some Type of Way ™️ Mailing masks across the Mid-South region 💌 DM me or email [email protected] if you need masks!
Janet Dafoe
@janetdafoe
Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Putrino Lab
@putrinolab
We make people (and technology) better at Mount Sinai. Opinions are my own.
Naomi Harvey PhD #WearAMask
@naomi_d_harvey
Zoologist. She/her. 23yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ naomidharvey.bsky.social
Dr Asad Khan FRCP FRACP 🇵🇸🇳🇿🇮🇳🇬🇧#pwLC
@doctorasadkhan
Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Nina Agrawal
@agrawalnina
Health reporter @nytimes. Proud alum @latimes
Erin Lee 🌻
@erinmarilee
ME/CFS since 2001 | Passionate about education access and finding a cure | Faith, Hope, Love | @erinmarilee.bsky.social
Strawfie Challenge
@strawfie
A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
ME/CFS News
@mecfsnews
News, interesting information and commentary on ME/CFS. Mostly inactive these days.
KarenLesliePhysio
@karenphysiocouk
Neurological physiotherapist with physio.co.uk / Co-founder @PhysiosForME / Research Assistant and PHD student at Liverpool University
Jonas R. Kunst (@kunstjonas.bsky.social)
@kunstjonas
Professor of Psychology @UniOslo. Past @Yale @Harvard @UiB. Editor @Advances1n. Father. Views are my own. @kunstjonas.bsky.social @[email protected]
kenya ✨
@kenyathehunter
Creative Storyteller | Postpartum Doula | RTD Metro Bred | Mostly logged off here, but @/kenyathehunter everywhere
Billy Hanlon
@bhanlon15
ME/CFS | Long COVID | IACC
S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic
@dysclinic
Neurologist, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic #LongCovid #POTS #EDS, tweets🚫med advice
Thane Black
@thane_black
Laura Leyton, MD 🩺
@lauraleytonmd
Bilingual Spanish Board Certified Internal Medicine Physician,🎧 🎶Content Creator, 🐶 Mom, 🇪🇨 Ecuadorian, Medical Licenses: CA, FL, MO, NJ, NY, TX #LongCOVID
Whitney Dafoe
@dafoewhitney
Severe ME/CFS patient and advocate. Sick since 2004, bedridden since 2013. Never. Giving. Up. ✊ Useful info for ME/CFS and Long Covid patients in bio link.
Long Covid SOS @longcovidsos.bsky.social
@longcovidsos
UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation longcovidsos.org longcovidsos.bsky.social
Julius Coeruleus, MD
@champagne_tapi
champagne taps on pause due to post-viral dysautonomia #POTS #Dysautonomia #MECFS #LongCovid
Blackdisabledlivesmatter
@blackdisabledl2
We are an organization fight for black disabled lives at all time
brittany 🩷 I GOT BETH MARCH ALTERNATE
@sapphicswilder
18, she/her | 🎭 musicals, singer, fanartist and writer | ♿️ disabled, ambulatory wheelchair user + AFOs / auDHD, ARFID, hEDS, POTS | 💜 1/2 brilin @kelslc
Tess Falor, Ph.D. | Renegade Research
@tessfalor
Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome
Long Covid Advocacy 💙
@longcovidadvoc
📘Legislate ⚕️Investigate 🌬️Ventilate 👥Educate Advocacy4 #LongCovid #MECFS #COVIDisAirborne 🛍️ longcovidadvoc.shop
Melissa Mazur
@phillyphile215
Just a Philly girl, livin' in a lonely world…and a Luddite learning to Twitter. #LongCovid since March 2020 || Lawyer on Pause
@TheChronicCollaboration
@thechroniccolab
A resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equality.
Bridget O'Shea
@bridget_oshea
Certified medical #writer, enthusiastic #journalist, cat mom, @UChicagoProEd, ME/CFS patient. Freelance journalist. Available for medical writing and editing.
Katie Johnstone
@sockfoam
She/her. Chronically ill with ME and POTS, Blogger on Substack, @kjohnstone.bsky.social
💛Lady w/ LongCovid💛
@theextrafiles
#LongCovid 2/2020=before vaccines ~ International #LongCovidAwareness ~ Hater of #COVID ~ #CureLongCovidNow ~ #LongCovidKids #LongCovidMakesUsOne ✝️✌🏼💛😷
Ror Preston
@rorpreston
Founder @ CrunchME | Creating the evidence & insight base to help crunch IACCs 💙 | #MECFS #LongCovid
New Disabled South
@disabledsouth
Working to achieve liberation and justice for disabled people in the U.S. South | 501c3 nonprofit | Check out our 501c4 arm @DisSouthRising
PostX #UniteToFight2024
@teampostx
Co-Founder of @U2Fight_World /#UniteToFight2024//Long Hauler since 2020
Initiative #LiegendDemo, ME/CFS
@liegenddemo
Wir organisieren Demonstrationen und Aktionen für Aufklärung, Versorgung und Forschung für ME/CFS, unabhängig vom Auslöser. Plakate und Handouts s. Link⬇️
LD
@drldyment
Mother, Family Physician, Myalgic Encephalomyelitis and Breast Cancer warrior - humbled and grateful for the life lessons - it’s personal.
Renegade Research
@renegaderes
Nonprofit community science, patient-led, philanthropically funded, decentralized research org. Open source, power to & from the patients Runs @remissionbiome
Post-Exertional Mayonnaise
@pempodcast23
Podcast about living with ME/CFS & chronic illness, creativity and making meaning with Dov Zeller and @talmandaniel
dianna haze
@diannahaze
Tweeting through the hazy brain fog of Severe Long Covid. (Chronically ill alter-ego of @thephysicsgirl)
Natasha
@curemetogether
30 & sick with Mild/Mod M.E. from a Covid Infection. Part of the biggest mass disabling event in modern world history. #Millionsmissing
jess
@vitaminbitch12
just an 18 yr old girl with a broken body and a broken heart. #LongCovid #MECFS
#ThereForME
@thereforme_uk
@JohnVsJonVsME
@johnvsjonvsme
#JohnVsJonVsME campaign to get Oliver and/or Stewart to bring the awful history of #MyalgicEncephalomyelitis #GreatestMEdicalScandal to light. Same on IG/BSky
Michael Gordon
@teamkarengordon
Rachel Gross, MD, MS
@rachelgrossmd
Pediatrican focused on preventive care and health equity; @nyulangone; @pophealthnyc; early child obesity prevention; #LongCOVID in children; tweets my own
Bea is Chronically Persisting✨
@be_kinderr
Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Adam
@abrokenbattery
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Sten Helmfrid 🇺🇦
@stenhelmfrid
Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Rebecca Ryan
@drrebeccaryan
Gastroenterologist & Hepatologist. Disorders of the Gut Brain Axis. Treating Long Covid, POTS, MCAS, hEDS.