European ME Coalition (EMEC)
Advocacy organization for ME/CFS patients and their carers in Europe
@tinekestrik.bsky.social
Member of European Parliament @groenlinks-pvda.bsky.social @greens-efa.eu • Asylum, migration, rule of law, human rights, rapporteur Hungary • professor Citizenship and Migration Law
@kimvsparrentak.bsky.social
@maritmaij.bsky.social
Lid Europees Parlement GL-PvdA | voorzitter Taal aan Zee | was directeur ActionAid, lid Tweede Kamer, diplomaat
@chahim.bsky.social
🌹Europarlementariër @Groenlinks-PvdA / Vice-president @TheProgressives | European Green Deal en Gezondheid 🍀 | 📍Helmond & Brussel | Vader van 2 👨👩👦👦
@baseickhout.bsky.social
@scienceforme.bsky.social
We are an independent, patient-led, international discussion forum (www.s4me.info) for people with ME/CFS and the carers, clinicians, scientists and advocates who support us. This account is maintained on a part-time basis by patients.
@mikeseumarathons.bsky.social
I run marathons around Europe raising funds for Invest In ME's biomedical research projects to cure ME. 32 countries so far. £51k raised. Next race: #33 Belfast, N.Ireland (04.05.25) www.mikeseumarathons.eu www.justgiving.com/mikeseumarathons
@strangerandstranger.net
Author of "stranger and stranger”, letter writer, advocate and fundraiser for biomedical ME/CFS research.
@snowypanthera.bsky.social
Animagus. Hearty but not hale. Celebrant of beautiful action. Likes bicycles. Note: The only time I post with my real name is in scientific journals.
@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
@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
@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. [email protected]
@stenhelmfrid.bsky.social
Ph.D. in physics, also interested in mathematics, science theory, and history. Follows research on ME/CFS. Stockholm, Sweden
@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
@scheibenbogen.bsky.social
Immunologist and ME/CFS researcher @Charité https://cfc.charite.de/
@ninaweber.bsky.social
Medizin-Redakteurin beim SPIEGEL, Biochemikerin, Buchautorin. https://www.spiegel.de/impressum/autor-de0618d4-0001-0003-0000-000000015007
@ahandvanish.bsky.social
Research, algorithmic art & music, machine learning, anti-bias in AI data. #LongCovid research & advocacy @patientled.bsky.social.
@millionsmissingfr.bsky.social
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. #MECFS #EMSFC #pwME #paEM #MillionsMissing . Member of the World ME Alliance.
@martinruecker.bsky.social
investigativjournalist | www.martin-ruecker.com | Threema: TUFVC84Z
@mmissingholland.bsky.social
Actiegroep #MillionsMissing Holland wil betere zorg & sociale gelijkheid voor ME-patienten.
@putrinolab.bsky.social
@neurostingl.bsky.social
Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
@bmhughes.bsky.social
Concerned citizen • Prof Psych • Writer • Galway • he/him A blog: https://thesciencebit.net/ A bio: https://brianmhughes.com/ A book: https://bloomsburycp3.codemantra.com/viewer/63721f10ee35880001aafadc 📷 https://www.photoblogism.net
@cyruxime.bsky.social
Energetically compromised (bedridden) by severe #MECFS. All systems operating at minimum capacity & overloaded. In a previous life: comp sci x math, powerlifting. #LongCovid ally.
@icancmeresearch.bsky.social
Interdisciplinary #Canadian Collaborative #MyalgicEncephalomyelitis Research Network (created in 2019). #MECFS #PwME #LongCovid (Account managed by Sabrina.)
@simonmcg.bsky.social
Sometimes try to explain and comment on ME researchh, or even contribute to it. And I advocate for more and better research.
@danwyke.bsky.social
M.E. inactivist, person-centred counsellor, recovering poet (Rack & Waterloo Press)
@maosbot.bsky.social
Parent, spouse, Australian, Professor of Machine Learning in Oxford. Bayesian ML, Long Covid, trans rights, photos of dog, AI must be good for humans, https://www.robots.ox.ac.uk/~mosb
@meforeningen.bsky.social
Norges ME-forening (Norwegian Myalgic Encephalopathy Association) jobber for å bedre situasjonen for landets ME-syke. Facebook: https://www.facebook.com/MEforeningen/
@drdanielloy.bsky.social
Ehemann, Jurist. #MECFS. Team #SIGNforMECFS. Team #GOfundMECFS. One of the #MillionsMissing.
@jimfaas.bsky.social
zo nodig dwars |verzekeringsarts | jurist | phd | docent | schrijven | lezen | zingen | radio dj | kunst & kunde | semper fi
@benhmecfs.bsky.social
ME/CFS patient advocate, Open Medicine Foundation science correspondent. Bedbound. Former: exercise physiology, biochemist in training, athlete-Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
@dysautonomia.bsky.social
We are the leading non-profit advocating for over 70M people around the world living with autonomic nervous system disorders. Research, Clinician Education, Patient Empowerment, Public Awareness & Advocacy is what we do. DysautonomiaInternational.org
@sibylledahrendorf.bsky.social
former filmmaker II torn from life due to complex chronic illness II #CranioCervicalInstability #MCAS #SmallFiber #PoTS #FluoroQuinoloneToxicity #FlagylToxicity #Lyme #ME II https://sibylledahrendorf.jimdofree.com II Wer unter meinen Posts pöbelt ➜ Block
@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
@schreinerorg.bsky.social
documentalist | one of #millionsmissing | team #GOfundMECFS & #SIGNforMECFS | suffering from #myalgicencephalomyelitis 08 | 1. FC Union Berlin
@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
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@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
@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
@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
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
@klangensiepenmep.bsky.social
Mitglied d. Europäischen Parlament | MEP | Greens/EFA Stellv. Vorsitzende d. Sozialausschuss (EMPL) Mitglied im Gleichstellungs+Binnenausschuss (FEMM+ IMCO) ♿️(she/her) https://www.katrin-langensiepen.eu
@juttapaulus.bsky.social
MdEP, #ScienceGoesPolitics Kämpfe für Artenvielfalt, Klimaschutz, schadstofffreie Umwelt https://www.jutta-paulus.de/
@irishmecfsassoc.bsky.social
Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association NB: Posts should not be considered advice Registered Charity Number 20100254 CHY 22039 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also