Ben H
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.
@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
@lisamccorkell.bsky.social
formerly a patient-led research collaborative co-lead, always a co-founder | MPP | she/her | natures 10 in 2022
@mildtin.bsky.social
Usually a lurker, Chronically Online for #LongCovid and other #IACC | Australia
@patientled.bsky.social
Patient-Led Research for #LongCovid! http://patientledresearch.com
@reialexandrayyc.bsky.social
Unapologetically Disabled. Film Lover. Creative Dabbler. They/Them. NO unsolicited advice. 13 Years Severe #MECFS #PWME #YYC Same username on Twitter.
@schreinerorg.bsky.social
documentalist | one of #millionsmissing | team #GOfundMECFS & #SIGNforMECFS | suffering from #myalgicencephalomyelitis 08 | 1. FC Union Berlin
@jefferysmithme.bsky.social
Lover of old films, books, Doris Day and Rosemarys Baby and other who-haa. Cranky empath. Dealing with servere ME. and cancer. Politically sensible, sensitive and left.
@alicefricker.bsky.social
21, Bedridden for 9yrs with #VerySevereME #hEDS #SFPN #MCAS #PoTS Chronic Insomnia & Chronic Bladder condition. Mother helps run account. ♥️ Instagram : @aliceandthemillions / alicefricker
@sarahlizzylou.bsky.social
She/her, Physio student on hold since Oct 2021 LongCovid/ME 🇬🇧 Learning to live with Cognitive Dysfunction 🧠 #FBLC #pwME My Twitter handle was @SarahLizzyLou
@oblivionwithbells.com
I blog about mortality awareness. Humanist. Anti-authoritarianism. I have #MECFS. Reposts not necessarily endorsements. (he/him) My blog: https://oblivionwithbells.com Location: Loughborough, United Kingdom 🇬🇧
@purplespeedwell.bsky.social
Mostly bedridden with #MyalgicEncephalomyelitis, a devastating illness with little funding and no treatment. Toronto, Canada Ally of #pwLC #pwME #LongCovid #POTS #MCAS #MEcfs
@joyk8.bsky.social
Medically retired palliative care RN, #pwME since 2001. #MECFS #POTS #MCAS #EDS Enthusiastic gardener, baker, and candlestick maker.
@franceyme.bsky.social
https://amandafrancey.com/ illustrator, amateur photographer and bird telepath. Advocating for myalgic encephalomyelitis #MECFS #LongCovid #ClimateAction
@joannesmith.bsky.social
ME since 1991.Owned by Shih Tzu called Teddy 🐾 Interested in ME advocacy & research.Dogs inc.welfare eg #LucysLaw .Wildlife. Books. Bit of Politics. #pwME Twitter Handle @_joannesmith
@phoenixme.bsky.social
Bed-bound activist with severe ME/CFS. ME/CFS, chronic illness, #AusPol, #USPol, climate justice, social justice, crochet, cats, sci fi. Views expressed are my own. If I had any spoons, I'd be dangerous. Boonwurrung country, Australia
@emmiskyten.bsky.social
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.
@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.
@mecfsnanoneedle.bsky.social
Severe #MECFS Patient Bedridden. No energy to speak. #MECFSDiagnosticBiomarkers Drug companies need a #MECFS and #LongCovid diagnostic blood test for successful clinical trials. https://mecfsdiagnosticbiomarkers.substack.com/
@turnoftheshrew.bsky.social
Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.
@kirsties.bsky.social
UK #pwME #pwLC #MECFS #LongCovid #PEM (post-exertional malaise) as well as #Politics and other related chat. I use lists to manage my chats here. Feel free to use them or ask to be added https://writingandme.com/
@notunpackedyet.bsky.social
Here to talk about #MEcfs, #MEspine, #hypermobility, #POTS, #hEDS, #LongCovid, #ChronicIllness and #disability ...but I also have opinions on other things. You have been warned :P
@openmedf.bsky.social
OMF is fundraising to support open, collaborative research to find effective treatments and a cure for ME/CFS, Long COVID, and related diseases.
@helma.bsky.social
Ein freundliches Hallo an alle :) (she/her) "One day at a time. We cross the bridge when we get there" #Chronicillness #Mecfs #Dysautonomie Bibesch Header: Ein Rüsseltier Bibesch Profilfoto: Ein Teil meines Gesichts mit Maske
@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
@cortjohnson.bsky.social
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
@millionsmissingswe.bsky.social
#MillionsMissing is a global campaign for ME health equality! https://meaction.net #MillionsMissingSweden #MEAction #MECFS #pwME #svmed #MEAwarenessHour
@jengovey.bsky.social
I dress up in fancy dress for the charity Invest in ME Research to raise funds & awareness of Myalgic Encephalomyelitis. In a previous life I worked in film. I’m an advocate for good science, treatments & better healthcare for #pwME.
@thisismetweety.bsky.social
Apparently I don’t like viruses. #MEcfs as a child; post viral syndrome as an adult; now #LongCovid; #fibro; #hypermobility; #hEDS #pwME. Kiddo with #LC. #ND. #HealthPolicy research. (Yes I know it’s Skeeting & hashtags don’t work the same. Give me time.)
@odyody.bsky.social
Chronically ill. Medical research, better care for underresearched & rare conditions, disability rights & ethics. @OdyO11 at 🐦
@mayalongcovid.bsky.social
RWJF ClinicalScholars Alum, School Nurse, Scientific Diver/ocean lover bedridden by severe #LongCovid 3/2020 & #MECFS, #POTS, #MCAS #hEDS #Chiari. #healthequity
@exceedhergrasp1.bsky.social
Scientific Director, #MEAction Stanford Med Université de Montréal TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own exceedhergrasp1 on Twitter
@emec.bsky.social
Advocacy organization for ME/CFS patients and their carers in Europe
@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
@britborg.bsky.social
Dutch. Severe ME. Previously journalist. #Fraudevinkje #code98 @brit_borg on Twitter/X #JournalismIsNotACrime
@mefoggydog.bsky.social
Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - http://bit.ly/408o6LI
@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
@lizhighleyman.bsky.social
Freelance medical journalist. Science editor for @pozmagazine.bsky.social, Hep & CancerHealth. Words for @slate.bsky.social, Bay Area Reporter. Research beagle adopter. Socialists think I'm a libertarian, libertarians think I'm a socialist.
@julesahouston.bsky.social
Body malfunctioning since 1998 #MECFS #PoTS #MCAS #hypermobility & other delights. I'm a #LongCovid #LongCovidKids and #Pans #Pandas ally. Here to make connections old & new. #CovidIsNotOver #CleanAirForAll #MasksInHealthcare #GreatestMEdicalScandal
@drkelleherfurth.medsky.social
Fachärztlich-strategische Beraterin und Partnerin in gesundheitlichen und beruflichen Umbrüchen – hin zu sinnvoller Arbeit, persönlichem Neubeginn und systemischer Gesundheitsbildung. Schreibt in der #MedSky Bubble über #LongCOVID, #MECFS, #Schlaganfall …