A Darkened Room
One of the #millionsmissing || Raising awareness of the most severe form of #MyalgicEncephalomyelitis
@merespite.bsky.social
ME RESPITE is a registered New Zealand Charity providing practical support to those with Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS) and related illnesses.
@somethingchronic.bsky.social
Mostly bedbound by severe #ME/CFS #POTS #EDS #MCAS and more. Chronically hopeful for better days. Determined to fight against injustice so people with ME and LC are treated with the same belief, respect and kindness as any other serious physical illness.
@500milesforme.bsky.social
West Wales - Gorllewin Cymru - Carer - son very severe ME - longing for him to get his life back - www.500milesfor.ME
@rebellionista.bsky.social
Single mum. Expert napper. Pet wrangler. Severe ME/CFS. My son & I are AuDHD. Former gifted child. Reformed TV producer. Live for horror movies. Life is a roller coaster.
@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
@heikewigr.bsky.social
🐦 @will_ins_Gruene One of #millionsmissing since 2002 #MECFS Diagnose 2021
@eucatastrophe.bsky.social
severe #myalgicencephalomyelitis , #longcovid. Interrupted artist. Existing somewhere between life and death.
@anneinayrshire.bsky.social
Long term living with ME (over 30 yrs) Have a lot of crashes but Still trying Still hoping Largs, Scotland
@emilychatelet.bsky.social
Biochemistry Geek, Research Analyst, Dogged Advocate, Optimist In Spite of The Deluge.
@michelleb4.bsky.social
A mixture of stuff #MECFS #LongCovid #frailty #mtb #cycling #feelthefearanddoitanyway co-founder @PhysiosForME Views are all my own
@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/
@pumpkinstars.bsky.social
hi im pumpkin. 🧠🌶️. Asexual. Anti-racist. I like gardens and colors. ME/CFS, hEDS, MCAS, POTS, Fibro, auto immune. nearly bedridden. i love people and also people scare me. 🇺🇸
@restlesssands.bsky.social
Myalgic Encephalomyelitis (ME) patient advocate with special interest in exposing dogma while championing good science. International Consensus Criterion #ICC 90% homebound to manage moderate ME. Acute onset, post viral 2012.
@thisistheillme.bsky.social
🇬🇧: Severe ME & long covid 🇳🇱: Auteur van 'De achterblijvers' (Uitgeverij De Geus) 🏳️🌈
@janetsylvester.bsky.social
Daughter with ME since 2012. Volunteer with #MEAction UK and #MEAction Scotland. Views are my own.
@ryanneufeld.bsky.social
When ME/CFS (+ all these other disabilities) isn’t the death of me, improv is life. Look for the helpers. And when able, be the helper.
@addieholder.bsky.social
Working hard to carve out a fulfilling life while housebound and mostly bedridden. Battling ME since 1988. #pwme #MyalgicE #millionsmissing
@clau-prudhomme.bsky.social
#MECFS #POTS #Fibro patient/atteinte d’EM/POTS/Fibro- since 2008 🇨🇦 New caregiver of my 19yr old son with severe #LONGCOVID/ME #POTS 😢😭 Former veterinarian Membre comité scientifique AQEM- post infectious illness interest
@nanettedanielsson.bsky.social
🦋 Activist with ME ♿️ PhD in Psychology 🎓Former researcher 📚 & integration strategist💡Expat in Sweden 🇺🇸➡️🇸🇪 #Latina🌶🐕🌳🎨🖼✍️ #Democracy #ProChoice #HumanRights #SocialJustice 🏳️🌈🏳️⚧️♀️♻️✊🏾⚖️🌎🙏🕊💙 #ChronicIllness #ME #MECFS #MillionsMissing 🚫Crypto 🚫DMs 🟰 Block 🚫Porn
@lauravictorine.bsky.social
Former medical doctor | PhD | Living with moderate/severe Myalgic Encephalomyelitis (ME) | Dutch 🇳🇱 | Cat mom of two | #pwME #myalgicencephalomyelitis #myalgicE
@siobhansimper.bsky.social
Full time ill/Disabled person (ME/CFS and now Long COVID) writing about disability and craft. #MillonsMissing. #MECFS http://chronicallysiobhan.wordpress.com
@suffolksky.bsky.social
Severe M.E. for over 20 years. Just getting through the day. Living in Suffolk.
@endmecfs.bsky.social
Caregiver for husband. Navigating the rough waves of ME/CFS and hoping for an end to the disease soon.
@faithie.bsky.social
SevereME/vax injured. Can't read, write, watch, walk or talk much. Just me, my bed & my swollen brain. Trying to stay sane. Roy Kent is my spirit animal.
@yeslek.bsky.social
On hiatus due to Myalgic Encephalomyelitis Profile: smiling human, eyes closed and partially covered by hand, in black and white filter
@tessapinto.bsky.social
ME [+ comorbidities] post-vax in 2021. 100% bedbound since July 2023. Hope one day to become an advocate for this life destroying disease. Exponent of patient-led research & advocacy, and the right to try.
@sickbound.bsky.social
Sick Bound: Life from bed with ME/CFS and Long COVID. A blog by Rosemary Harper. Coming soon!
@joannebright.bsky.social
Mild ME in 1986 after Glandular Fever. Developed Lymphedema in 80's. GP diagnosed Milroy's Disease in 90's. Severe ME from Flu in 2000. Chronic Lyme also. Borrelia free after it coming back several times. Methylation & Detox mutations are work in progress.
@diamondqc.bsky.social
♿ australian living on unceded wadarni noongar land (southwest WA)・she/her・very sweary! #SevereME #auDHD #OCD #cPTSD #CSAsurvivor #AccessibilityMatters #Disability #genXgoth #TechGeek #Linguistics #Straya #AusPol #AusMusic #IndieMusic #AltMusic
@valerieeliotsmith.bsky.social
Independent researcher living with myalgic encephalomyelitis (ME) since 1981. Barrister (ret'd) #TMTlaw Visiting scholar @QMUL Blog at http://valerieeliotsmith.com Based in London, UK
@untonuggan.bsky.social
angry mast cells (HaT and #MCAS) + #POTS + neurodivergent. ♿ queer. white. emperor of typos. brain fog zone ⚠️. they/them 🎶 iii'm still masking 🎶 working on porting more of my body science infodumps and such to: liminalnest.wordpress.com #NEISvoid
@ankezoontjens.bsky.social
Veganist 🍃 ME (myalgische encefalomyelitis) LongCMV 🤷♀️ LongEBV 🤷♀️ 💙✊🏳️🌈 IBD (colitis ulcerosa) 💜✊🏳️🌈
@mecfshawaii.bsky.social
Patient Advocate + Caregiver to pwME/Septad 🦓🦒 #ME #EDS #POTS #MCAS #LongCOVID #MEActionHawaii
@oonaghcousins.bsky.social
@sacapps.bsky.social
Co-Director, Community Engagement Core @ UC Davis Environmental Health Sciences Center
@alitwy.bsky.social
Living with Long Covid. Doing my bit to support UK healthcare workers with Long Covid. Chair of Supporting Healthcare Heroes UK. Associate Member Long Covid Support. Editor-in-Chief Evidence Based Nursing. Retired Professor of Children’s Nursing. #FBLC