Hippymum
Happily married. Fighting to get through one day at a time. 42 years with M.E., hEDS, POTS, COPD, Fibromyalgia, Osteoarthritis, Scoliosis, Reynauds, and a whole heap of other crap. I've no quality of life, mostly bedbound and hate it.
@zero-hour.bsky.social
🌍 Now, more than ever, we need REAL change—ask the Government to give the #CANBill an emergency debate in Parliament. It takes 2 minutes! ✍️ zerohour.uk
@wonderofscience.bsky.social
"The most beautiful thing we can experience is the mysterious. It is the source of all true art and science" - Albert Einstein linktr.ee/wonderofscience
@positivemoneyuk.bsky.social
Shifting power from big banks to people, and working to redesign our economic system for social justice and a liveable planet. positivemoney.org
@anotherangryvoice.bsky.social
Politics and economics https://anotherangryvoice.substack.com/
@drbelkr.bsky.social
🇦🇺 South Australia 🏳️🌈 Queer 👩⚕️ Retired doctor - ME/CFS & POTS advocate (Doctors with M.E. member) 🌏 Climate crisis advocate (Climate and Health Alliance member + Doctors for the Environment Australia member)
@hmsacharity.bsky.social
We're a UK, patient-led charity supporting people with all kinds of symptomatic hypermobility to self-manage their condition where possible, educate professionals on how to support patients, and raise awareness generally. We like cake too hypermobility.org
@emlywill.bsky.social
Scientist, zebra, #ActuallyAutistic. I study #autism #genetics #evolution #NeanderthalDNA #EhlersDanlos -- Asst Prof/Basic Scientist @ St. Louis University. Tweets = mine.
@ukpots.bsky.social
Educates and supports patients, family, friends and medical professionals within the UK about Postural Tachycardia Syndrome (PoTS) PoTS UK - Charity 1159813 https://linktr.ee/potsuk
@cppedsa.bsky.social
An online resource for the EDS and HSD community. We provide informative resources and education for patients, families and physicians about the Ehlers-Danlos Syndromes and related conditions. https://chronicpainpartners.com
@mywayaccess.bsky.social
Disabled Activist. Founder of My Way Access Co-Founder of DPAC Northern Ireland Director at IMTAC Vice-Chair of FODC's Access and Inclusion Group
@freezemysnowball1.bsky.social
What’s is Snowball??…Think TripAdvisor for the disabled community. Apple https://apps.apple.com/gb/app/snowball-community/id1624679548 Android https://play.google.com/store/search?q=snowball+community&c=apps&hl=en&gl=US
@deborahbrian.bsky.social
Recovering academic, research manager, #POTS, #ChronicIllness, etc. Opinions my own; fools not suffered. Meeanjin. she/her
@sedsconnective.org
The foremost hypermobility neurodivergence community charity BrainBodyMind AUTISM ADHD DYSPRAXIA TS DYSLEXIA EDS HSD pain Chair @JGjanegreenmbe.bsky.social Patron @bendybrain.bsky.social Web: www.sedsconnective.org Link: https://linktr.ee/JaneGreenSEDS
@jgjanegreenmbe.bsky.social
Founder @SEDSConnective.org Fellow FCCT / UK Rep. EFNA CAB / exAHT / MA Ed AHT neurodivergence Hypermobility Disabled often discombobulated / Was School dropout / Parent / carer MBE for services to neurodivergent hypermobility folk 2023
@nicolajeffery.bsky.social
Writer for The Canary Events manager at AMBI 🫶🎶🏳️🌈🏳️⚧️ #FreePalestine🇵🇸
@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
@dramirkhangp.bsky.social
NHS GP, TV Doctor, Nature Enthusiast, Human Rights, Writer, Home Cook
@emmagl.bsky.social
Co-founder #ThereForME | Calling for an NHS that's there for Long Covid & ME | https://www.thereforme.uk/ Linguist, DELTA-qualified English 2nd lang teacher | https://hiveofactivities.wordpress.com Design | https://emmarubystudio.com/ She / her
@hopefullizzy.bsky.social
30y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice✨ Bristol, UK
@drmelissageraghty.bsky.social
🦋 CEO of Phoenix Rising with Dr. G 🦋 Clinical Health Psychologist (Complex Medical, Rare Disease, Eating Disorders) 🦋 Medical Gaslighting Sensitivity Trainer 🦋 Keynote Speaker 🦋 #IamRare 🦓 ♿ www.phoenixrisingwithdrg.com
@ptswithpower.bsky.social
Rogue neuroscientist fighting for medicine based on science; not bias⚡️ Health scams & dodgy science 🧐 Patient rights & power dynamics 🦾 I like solving puzzles. #NEISvoid #MedicalGaslighting
@davidjoffe64.bsky.social
Respiratory and Sleep Medicine Neurobiology and Long Cövid WHN Long Covid Working Group Vice Chair
@rthm.bsky.social
RTHM connects you with a digital care team specializing in Long COVID and ME/CFS that provides access to therapies based on the latest research. https://direct.rthm.com/?utm_source=bs&utm_medium=link&utm_campaign=bio&utm_id=profile&utm_term=web&utm_conten
@resiapretorius.bsky.social
Distinguished professor, Stellenbosch University and Honorary professor, University of Liverpool.
@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
@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
@bendybrain.bsky.social
#hypermobility (and related conditions) brain-body neuro #research @bsmsmedschool UK | Dr Jessica Eccles | http://Linktr.ee/bendybrain | views own | https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx
@hedsphysicist.bsky.social
X @hEDS_Physicist | Insta @hypermobile_physicist #Bisexual PhD Physicist & industry engineer journeying and blogging through #ChronicPain with #hEDS #MCAS #dysautonomia. Posts not medical advice. #BLM https://linktr.ee/hypermobilephysicist
@ack025.bsky.social
Links+follows related to: Ehlers-Danlos + Lyme + MEcfs + Autoimmune (Myasthenia Gravis, Sjogren’s, Hashimoto’s) + POTS + Mast Cell + ApoE (4/4) + Bilateral Vestibulopathy + BPPV + SIBO + migraine + mito myopathy + Long COVID + LMCA & Celiac Artery Stenosis
@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/
@ehlersdanlosdaily.bsky.social
Hi, I'm Lauren. I'm a US-based artist (LaurenRubinArt.com; thank you for your support!) and a zebra (EDS, POTS, epilepsy, MCAS...should I go on?). This account is specifically for those who want to keep abreast of news and information of interest to EDS.
@sunny-rae1.bsky.social
Consultant Cardiologist, also treating and researching Long Covid. Long Covid Advisory Team @ WHN, #TeamClots, Medical Champion @ Long Covid Kids. Prevention is better than cure. Views my own and not medical advice x
@joissummers.bsky.social
Setting this up as I gradually move over from the bird place. ‘X’ since Musk is a bit like the UK post Brexit. Lovely to see some familiar faces and look forward to getting to know new ones. Post mainly about politics and covid. #FBPE #FBLC #PWLC
@drclairetaylor.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.
@odyody.bsky.social
Chronically ill. Medical research, better care for underresearched & rare conditions, disability rights & ethics. @OdyO11 at 🐦
@stickmancomms.bsky.social
Stickmen helping to build understanding and acceptance of hidden disabilities and chronic illness, in a way that empowers us. (Run by Hannah Ensor - who has #hypermobility #PoTS and probably other stuff.) +talking about personal experience of #disability
@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.
@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
@johnpring.bsky.social
Editor/founder of Disability News Service; author of The Department, published by Pluto Books, August 2024; disabled journalist and author; autistic.
@vladvexler.bsky.social
Philosopher - ethics, politics, music | Slowly writing a book on Isaiah Berlin | Born in USSR, home is London | Living with ME since 2003. youtube.com/vladvexler (main channel) youtube.com/vladvexlerchat (chat channel) youtube.com/@vladvexlerphilosophy
@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
@francesryan.bsky.social
Guardian columnist and journalist. Commentator of the Year 2024. Author of Who Wants Normal? and Crippled. E: [email protected]
@cvcev.bsky.social
𝗖𝗼𝗿𝗲 𝗣𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝗻𝘁 in the 𝗨𝗞 𝗖𝗼𝘃𝗶𝗱-𝟭𝟵 𝗜𝗻𝗾𝘂𝗶𝗿𝘆 #FBCV (follow back CV) and JOIN us on FB 📸cv_cev ❌️@cv_cev www.clinicallyvulnerable.org
@physiosforme.bsky.social
A group of physiotherapists with a special interest in Myalgic Encephalomyelitis (ME) with the aim to improve physiotherapy management for people with ME Find out more at physiosforme.com
@dawson400.bsky.social
BlueSky bio is loading… Always give 💯%. Unless you’re donating blood. Just another papercut survivor!
@bendyhedsandco.bsky.social
For Awareness & Support of #Hypermobility #hEDS/HSD #POTS #ME/CFS #MESpine #Stenosis #MCAS & co. #PANS/PANDAS & #LongCovid ally #NEISVoid #MedEd for EDS/HSD & co 🔗 conditions go to: 👉 https://gptoolkit.ehlers-danlos.org/ 👈