Alice Fricker
20, Bedridden for 9yrs with #VerySevereME #hEDS #SFPN #MCAS #PoTS Chronic Insomnia & Chronic Bladder condition.
Mother helps run account. ♥️
Instagram : @aliceandthemillions / alicefricker
@binitakane.bsky.social
Long COVID/ME interested lung doctor | Campaigner for race equality, clean air & patient voice | Independent SAGE | Co-Founder South Asian Heritage Month YouTube: @LCCWYCD Enquiries: info@thelongcovidclinic.co.uk Linktree: https://linktr.ee/binitakane
@karenlhargrave.bsky.social
Co-founder #ThereForME | Calling for an NHS that’s there for ME & Long Covid | www.thereforme.uk Independent researcher & policy analyst | Migration & displacement | Projects with @odi-global.bsky.social | www.linkedin.com/in/karen-hargrave
@padpadpadpad.bsky.social
Microbial ecologist/carer. NERC IRF and MRF Emerging Leaders Fellow at the University of Exeter in Penryn. I like warming up bacteria, open & reproducible science, making focaccia, and exercise.
@me-cfs.bsky.social
Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak. I care. My ME/CFS News Aggregator: @me-cfs.mastodon.social.ap.brid.gy Ⓐ💚, (FR/DE/EN, but posts in english) Clinging onto the ledge above the abyss.
@thereforme.bsky.social
Calling for an NHS that's there for Long Covid & Myalgic Encephalomyelitis (ME) | www.thereforme.uk
@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
@abrokenbattery.bsky.social
Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos. https://linktr.ee/abrokenbattery
@sarahrichardson.bsky.social
@cgatist.bsky.social
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
@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.
@nelehelena.bsky.social
I'll "tweet" here about the things I don't like if the other app goes down
@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
@amymooney.bsky.social
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. http://www.OT4ME.com
@drclairetaylor.bsky.social
@neurologistmom.bsky.social
A neurologist, M.D., mother of a 16-year-old with #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains. 📍Seattle, WA
@grachstephanie.bsky.social
Physician specializing in ME/CFS, Long COVID, & associated complex disease | Assistant Professor of Medicine | She/Her/Hers | https://t.co/TkYm2MXvir
@emilyesfraser.bsky.social
Former doc filmmaker/cinematographer/teacher, current full-time sick person, occasional poet
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024
@remissionbiome.bsky.social
Community Science Project http://RemissionBiome.org
@aaronca11.bsky.social
Billboard campaign/fundraiser here https://www.notrecovereduk.org
@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/
@stevefifield.bsky.social
Informed decisions & verifiable facts please, not opinion & belief. UK. 🇬🇧 Mine of occasionally useful information. NHS and healthcare 💙 #Equality #Justbe #Inclusion #LGBTQ+ 🌈 ally #pwME #MECFS #Activetravel 🚲 #Sustainability #Gardening #VisibleApp
@domsalisbury.bsky.social
Ex-atmosphere/ocean scientist. Very ill with M.E #pwME. Patient advocate (when able). Interested in how we live. Open-minded, but always sceptical. Particular interest in calling out shoddy research and bad practice. [UK] https://domsalisbury.github.io
@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.
@carolinefricker.bsky.social
Full time carer to my daughter with very severe M.E. For 9 years.
@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
@katybrc.bsky.social
Myalgic Encephalomyelitis - M.E + POTS for 38 years Donor to the UK MEcfs Biobank for 10 years & @DecodeMEstudy Please watch http://dialogues-mecfs.co.uk/videos/ London, UK No DMs please #pwME
@whitneydafoe.bsky.social
Severe ME/CFS patient and advocate. Writer, photographer, filmmaker. artist, activist, creative. Bedridden since 2013 sick since 2004. Never. Giving. Up. ✊
@investinmeresearch.bsky.social
An independent UK charity finding, funding, facilitating biomedical research into ME and providing better education and awareness of this disease in UK & Europe (charity nr. 1153730) www.investinme.org
@rthonwesstreeting.bsky.social
Labour MP for Ilford North. Secretary of State for Health & Social Care.
@anneinayrshire.bsky.social
Long term living with ME (over 30 yrs) Have a lot of crashes but Still trying Still hoping Largs, Scotland
@rfh1955.bsky.social
ME/CFS archive, especially RFH 1955. For education, not profit. Relocated from Twitter. Researched since 2011 by @continuitytweets.bsky.social & @ciaranj_farrell. https://rfh1955.blogspot.com/
@decodemestudy.bsky.social
🧬 The world’s biggest study of genetic causes of #MECFS. Launched September 2022. 🧬 https://www.decodeme.org.uk/
@malnutritionme.bsky.social
Campaign for improvements in medical care for ME patients with gastrointestinal symptoms. http://25megroup.org
@mewarrior1.bsky.social
Wife, mum, Severe ME, 💙✝️♿️Fibromyalgia Observe small things, don't rush, love & forgive #loveyourself #loveothers ❤️ #chronicillnesswarrior1 on X & IG Opinions are my own 🤓
@swastrosarah.bsky.social
Speaking up for everyone affected by severe/very severe #ME. Medical science has everything to learn about human biology from the post infection disease ME. #MEKills backstory https://x.com/swastrosarah?lang=en-GB
@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
@tenaciousmumma.bsky.social
Mum & carer of Sophia, bedbound with very severe ME. Constantly searching for answers and a way out of the abyss. #lymedisease #severeME #POTS #chronicpain #allodynia #vertigo
@stephenmia.bsky.social
Former Skier, Cyclist, Climber, Hill Walker, Diagnostic Radiographer and functioning human. Now - ME, POTS, LC, Vax Injury - Pro Vax - Still finding the joy
@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
@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
@paulaknight.bsky.social
Author, illustrator, comics memoir THE FACTS OF LIFE (Myriad) Kidlit Books x3 Writing illustration comics poetry photography Disabled nonambulatory bedbased 6yr #pwME No DMs pls https://linktr.ee/paulajknight https://ko-fi.com/bedscape She/Her
@drjogreer.bsky.social
Mum, Carer, Myalgic Encephalomyelitis (ME) Advocate, Educational Psychologist
@carlywelton.bsky.social
She/her. Mostly talking about life housebound by chronic illness (when I have enough energy to). #pwME
@apeskygirl.bsky.social
Tree hugger with ME/CFS since 1992. #MEAction volunteer. Patient Advocate. OMF & Stanford Study Participant. ME/CFS • ND • POTS • EDS • One of the Millions Missing. Former Copywriter and Art Director. Now I watch squirrels and make things.
@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/
@livingnexisting.bsky.social
Reaching out to others with #ME/CFS. Learning to live a new life after Sepsis