MillionsMissingNL
Actiegroep #MillionsMissing Holland wil betere zorg & sociale gelijkheid voor ME-patienten.
@bentealinda.bsky.social
Had pech, werd ziek, leven weg (sinds 2009) | Bedgebonden door zeer ernstige ME, POTS, LongCovid, Lyme, CCI | Columniste | Insta: @bentealinda | Strooi met schrijfsels en vooral veel liefde🫶🏼↴
@francesryan.bsky.social
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled. E: frances.ryan.freelance@guardian.co.uk
@sunsopeningband.bsky.social
Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Oregifornian. Storyteller. It’ll be ok in the end. If it’s not ok then it ain’t the end. Alphabet soup after my name: DPT PhD MPH OCS. https://www.linkedin.com/in/todd-davenport-2795ba10
@fredverdult.bsky.social
Passie voor Perry, fietsen in Alpen, zweten in sauna | Levensgeluk verknald door lyme | Directeur Lymefonds | Trots Ridder op voorspraak Nobel laureate
@riendebock.bsky.social
Former mathematician. Life came to a sudden halt due to #LongCovid/ME, tweets in Dutch and English. @LongCovidNL.
@mecentraal.bsky.social
Platform voor mensen met Myalgische Encefalomyelitis, hun familie, vrienden, verzorgers & geïnteresseerden. https://mecentraal.wordpress.com https://www.facebook.com/MECentraal mecentraal@gmail.com
@bekhonl.bsky.social
Life on hold since 2021 #LongCovid #POTS #ME Psychologist for 25 years CBT, EMDR, ACT. Here to advocate for biomedical research & treatment #PAIS #IACC. Painfully aware of the harm that was done by my profession to PAIS patients.
@vanzelst.bsky.social
Verpleegkundig specialist huisartsenzorg Politiek junkie Heeft een lage tolerantie voor bullshit
@marielles.bsky.social
Passie voor onderzoeksjournalistiek & literaire non-fictie | Auteur van ‘Landziek, een medische geschiedenis’ | Vogelaar vanuit huis | Zin in meer natuur | ME/POTS
@jetroz.bsky.social
Former art historian, curator, traveler and hiker turned Long Covid patient. Five years and counting 🛏️🧟♀️
@louisekenward.bsky.social
Writer, Artist, Psychologist MOVING MOUNTAINS PhD candidate at Centre for Place Writing, Manchester Met Uni. Exploring the Romney Marshes & its coastline through post-viral illness. https://louisekenward.substack.com Represented by Portobello Literary
@begrepenklachten.bsky.social
Ondersteuning van patiënten met langdurige (onvoldoende verklaarde) klachten. https://www.begrepenklachten.nl
@thesicktimes.bsky.social
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
@marliesvanhemert.bsky.social
Arts (np) oprichter van Begrepen Klachten, voor patiënten met onvoldoende verklaarde ziektebeelden. Naast zorg nog veel andere interesses: actualiteit, politiek, sport, film/series en wat gezellige onzin tussendoor.
@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. davetuller@berkeley.edu
@taylorlorenz.bsky.social
Subscribe to my tech and online culture newsletter UserMag.co Listen/watch Power User podcast on all platforms!!
@workwellfoundation.bsky.social
#Nonprofit clinical #research providing 2-day #CPET #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses. workwellfoundation.org
@healthycontrol.bsky.social
Increasingly grumpy `healthy control’ research participant. Working to develop a way to involve patients and the public in designing health research (e.g. trials) from the earliest stage. Increase relevance, reduce bias, (and my grumpiness)
@nadineboke.bsky.social
Afgestudeerd als bioloog, nu expert in wetenschapscommunicatie. Woont naast de mooie Gaasperplas. Werkt voor de UvA. Geek, natuurliefhebber, kattenvrouwtje 🐱
@lithnoortje.bsky.social
Soms is er een aanpassing nodig voor gelijke behandeling! | Op wielen! 🦼 | Awareness is the key to change!🍀 | 28 jaar | Geeft niet op! 💪| #EerlijkInkomen4All | https://noortjestrijdtdoor.wordpress.com/
@teunkearvo.bsky.social
Independent historical researcher (involuntarily self-taught), writing at a frustratingly slow 🐌 pace due to severe chronic illness.
@beadekkers.bsky.social
LongCovid, MEcvs, POTS en MCAS sinds oktober 2020. Voorheen autisme specialist MSEN, persoonlijk begeleider VG zorg, nu WIA, IVA Samen met @marcbalemans en labrador Fiep
@filowenstein.bsky.social
writer + journalist covering health justice, wellness culture, LGBTQ+ stuff + more... https://www.fionalowenstein.com/ The Long COVID Survival Guide: https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/ they/them
@thisistheillme.bsky.social
🇬🇧: Severe ME & long covid 🇳🇱: Auteur van 'De achterblijvers' (Uitgeverij De Geus) 🏳️🌈
@vmatthiesboon.bsky.social
Professor by Special Appointment - Head of Department of Ethics and Political Philosophy, Radboud Uni. Interests: Long Covid, Health Justice, Postviral Ethics, Trauma, Critical Theory,
@meactmaryland.bsky.social
#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
@erictopol.bsky.social
physician-scientist, author, editor https://www.scripps.edu/faculty/topol/ Ground Truths https://erictopol.substack.com SUPER AGERS https://www.simonandschuster.com/books/Super-Agers/Eric-Topol/9781668067666
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
@dxrevisionwatch.bsky.social
Formerly monitoring/reporting on developments with ICD-11, ICD-10-CM, DSM-5, SNOMED CT & other classification and terminology systems
@bpsofficial.bsky.social
For over 120 years we’ve championed our members & psychology as a discipline. For customer support contact: info@bps.org.uk. Shares & ❤ not (always) endorsements.
@neurostingl.bsky.social
Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
@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
@emilyrj.bsky.social
Digital journalism. Design, news/book edits, linguistics, data, tech. Medical + academic research. Disability in news, media and accessibility design consults. @emily_rj on Twitter #CripTheVote #Iowa ♿️🏳️🌈📚
@johnthejack.bsky.social
Unbeliever (political & religious), Wales rugby, #c4news, porridge, tea, #MEcfs 'Obvious but wrong' Also JTJ on the other place https://johnthejack.com
@meadvocacyproject.bsky.social
The ME Advocacy Project is a grassroots initiative founded by individuals living with post-infectious illnesses Myalgic Encephalomyelitis and/or Long COVID. Unceded Canada
@luckytran.com
Public Health, Climate Justice, and Science Communication. Bylines in the Guardian, Washington Post, and more. WHO Fides member. Grist 50 Fixer. Opinions my own and do not reflect those of my employer. http://linktr.ee/luckytran
@longcovidadvoc.com
A non-profit social enterprise dedicated to people with Long Covid + ME. Shifting the paradigm one step at a time... https://www.longcovidadvoc.com/ 🛍️ https://longcovidadvoc.shop/
@longcovidsupport.bsky.social
UK Charity Keeping people with #LongCovid at the centre • Support • Research • Advocacy • Education • #ResearchLongCovid #TreatLongCovid #CureLongCovid www.longcovid.org https://linktr.ee/longcovidsupport 📧info@longcovid.org
@claguenjc36.bsky.social
Physio researcher/Senior Lecturer @LivUni co-founder @physiosforme | PhD | neuro rehab/exercise incl CV/fatigue/mental health/ME/Longcovid/EDI/all views my own she/her
@ontwarontwaar.bsky.social
ME-warrior, homo universalis, mind the body, train the brain with words, train the soul with feelings.
@owasow.bsky.social
Asst Prof, UC Berkeley, Political Science. Study protests, stats & race: 1/ Agenda Seeding http://j.mp/agenda-seeding 2/ Race as a Bundle of Sticks http://j.mp/bundle-of
@mecvsvereniging.bsky.social
Patiëntenvereniging die zich inzet voor mensen met ME/cvs en hun omgeving. Op naar meer erkenning, kennis, steun en zorg voor ME/cvs patiënten. www.me-cvsvereniging.nl
@mecfsskeptic.bsky.social
Exploring the history of psychosomatic medicine and research on myalgic encefalomyelitis/chronic fatigue syndrome (ME/CFS). https://mecfsskeptic.com/
@kunstjonas.bsky.social
Professor of Communication and Psychology at BI Norwegian Business School and the University of Oslo Past Yale, Harvard, UiB. Editor-in-Chief at Advances.in Father. Views are my own.