Daisy @daisy_court75
Severe Myalgic Encephalomyelitis | Dysautonomia | MCAS | Trying to navigate chronic illness with perseverance, an open heart, and a dose of humor 🐳 Joined July 2016-
Tweets4K
-
Followers834
-
Following430
-
Likes15K
I want to live, so badly. This is the cruelest fate.
Every time I join a new community group for people with Long Covid and/or ME I’m blown away by not just how many of us there are, but how much we need to figure out on our own. 💔
I’m about to put a towel over my eyes and earmuffs on so my caregiver can come in and inject meds into my Jtube. This is such a lonely illness. I honestly wish I could just hold someone’s hand every once in a while. But human touch makes me crash. #mecfs #LongCovid
Idk what to say when people ask me how I am. Casually suffering horrors beyond the scope of your imagination?
“What I mourn most, more than moving my body with ease or even leaving my apartment, is my lost faith in humanity. What I have been forced to witness, I cannot unsee. Bodies like mine, lives like mine are the future, and we are forsaken and ignored precisely b/c of that truth.”
“What I mourn most, more than moving my body with ease or even leaving my apartment, is my lost faith in humanity. What I have been forced to witness, I cannot unsee. Bodies like mine, lives like mine are the future, and we are forsaken and ignored precisely b/c of that truth.”
A “mild” Covid infection caused me to lose my career, my social life, my ability to walk, my independence, my joy. My once amazing life with my spouse is now an immense struggle. My hopes and dreams were destroyed overnight. #LongCovidAwarenessDay
I've lost 40 years of my life to this hellish disease. It steals everything from you, friends, family, energy, social life, etc. Living life in a darkened room and wearing earplugs, often unable to even get out of bed is a living death. We need change now.
I've lost 40 years of my life to this hellish disease. It steals everything from you, friends, family, energy, social life, etc. Living life in a darkened room and wearing earplugs, often unable to even get out of bed is a living death. We need change now.
Note to healthy people: Doing something kind for ME/CFS patients is the most rewarding thing in the world, they are so deprived of simple, good, loving experiences that the smallest gesture blows their world up with happiness.
Some people clearly don't realise how bad LC/ME can be. Try spending years of your 20's bedridden, unable to speak, tolerate light, sound or do anything but lie still enduring horrific symptoms and then tell me that it doesn't ruin lives. My life didn't 'change', it ended
“Grieving the loss of your life while you’re still alive is possibly the most bizarre thing I’ve experienced. I still haven’t quite found a way to verbalize it. It’s become my second skin, a ritual I perform everyday, and I am still so taken aback by it.” the-elephant-in-the-room.com/2024/02/22/feb…
“Grieving the loss of your life while you’re still alive is possibly the most bizarre thing I’ve experienced. I still haven’t quite found a way to verbalize it. It’s become my second skin, a ritual I perform everyday, and I am still so taken aback by it.” the-elephant-in-the-room.com/2024/02/22/feb…
This marks 15years. Fifteen years since I went to bed with a severe fever and virus. Fifteen years since my 14yr old self’s world changed forever. The level of suffering I’ve endured is indescribable. I’m exhausted, and the grief right now is overwhelming. So much loss.
This disease really is like living in an alternate universe. The way society portrays it compared to the reality of it is staggering. I feel like death everyday. Not figuratively but literally. I’m not tired. I feel poisoned while being deprived of oxygen 24/7.
I’m just so scared I’ll never walk again. Or read a book again. Or have a conversation or make a video ever again.
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Hannah Davis @ahandvanish
60K Followers 4K Following Research, algorithmic music, machine learning/AI, anti-bias in AI data. #LongCovid research & advocacy @patientled. they/them. DMs rarely checked
Wading through treacl.. @kimisgubbed
3K Followers 3K Following Advocate & sharer of bio research for INFECTION ASSOCIATED CHRONIC DISEASES inc MECFS, Long COVID, MCAS, Dysautonomia, Vaccine injuries, FMS, Sjogrens & Lyme 🔬
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Katy B @KatyBruce108
5K Followers 5K Following Myalgic Encephalomyelitis - M.E + POTS 38 years Donor to the @mecfsbiobank & @DecodeMEstudy Please watch https://t.co/rPfzhZQ6po #pwME
Naomi Harvey PhD #Wea.. @Naomi_D_Harvey
15K Followers 4K Following Zoologist. She/her. 22yrs with ME/CFS. Pro-vax but vaccine injured. Life on pause (views my own - unemployed) ♿️ https://t.co/YeMrEWwEg5
Daniel Moore @Talmandaniel
5K Followers 4K Following Curious & exhausted peace seeker, co-host of @pempodcast23, photographer and blogger. PwME, sidelined social worker, grief dealer, joy peddler, SAFC fan, He/Him
Richard Vallée @richardvallee
3K Followers 5K Following I play language. Mostly irreverent. Debugger. AI, global warming, integrity, healthcare & science. Chronically ill. #MillionsMissing #pwME #MEcfs
Clare Daly @clarejdaly
6K Followers 1K Following Usually a #WomanInTech - Year 4 of #LongCovid (2020) | #MECFS (1993)
Phoebe Boag @PhoebsBo
3K Followers 4K Following Life was once Leith, homelessness & a forklift truck. Life is now being chronically ill with ME & writing about it. Autistic. Smorky’s human. She/her.
Rivka @Rivkatweets
4K Followers 2K Following Activist/Organizer: ChronicIllness, disability, ME/CFS, Lyme, LongCovid, women | Writer: WashPost, MarieClaire, NPR, Ms, Newsweek | Playwright: Many productions
Dr. Sabine Hermisson @SabineHermisson
5K Followers 2K Following PD Dr. (empirical education research, religion) mother of Mila who suffers from very severe ME/CFS (Bell 0) M: @[email protected]
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Bridget O'Shea @Bridget_OShea
2K Followers 2K Following Certified medical #writer, enthusiastic #journalist, cat mom, @UChicagoProEd, ME/CFS patient. Freelance journalist. Available for medical writing and editing.
Carole Bruce @CaroleBruce17
6K Followers 5K Following Severe #ME for 32+ years. Ex- psychotherapist. Daughter, severe ME 38 years. Eldest son, MS. Apart from that ❤️Art, people,nature, books, some music.
Winston Blick @winstoncb
3K Followers 901 Following #MECFS post-viral #longhauler | ally of #LongCOVID | quoter of @mecfsquotes | previously, 🚵🏼♂️ 🏂 🏃🏻🏕️ 📖
PwME 4 bioMEdical res.. @ValeBodi
4K Followers 2K Following Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/MEdical apolide/gnarled Pacer
Sabrina Poirier (On H.. @Sabrina_Poirier
6K Followers 6K Following Community Builder / Passionate Collaborator / Chair - #MedicalEducation Group / #ResearchPartner / #MECFS #LongCovid Advocate / #PwME / #MCAS / #POTS / #Fibro
#MEAction Network @MEActNet
21K Followers 3K Following A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #MillionsMissing https://t.co/JhhNZoFYJi
Dysautonomia Recovery @FixDysautonomia
1 Followers 40 Following Husband & wife team 👫 Chronicling our recovery journey from #chronicillness. Offering tips to help others manage their #Dysautonomia #LongCovid & #POTS
JJ @M02181653M
2K Followers 5K Following #TreatLongCovid #LongCovid #Notrecovered #MECFS #MillionsMissing #PwME #BC007
Wa Rith @rith1626276
1 Followers 26 Following
Au Contraire @J_contraire
364 Followers 4K Following Interests include: Mass infecting diseases | Long Covid | ME/CFS | Autism | PDA | Alexithymia | Civility |Repost/Follow doesn't imply endorsement.
I🖤 @inadarkroom247
908 Followers 312 Following 25, UK and Dying from covid induced very severe ME. POTS + mild MCAS. FUNCAP 1.2
Ahmadkhan 12 @Ahmadkhan9246
1K Followers 3K Following
Treena Jensen @jensenink
42 Followers 1K Following
#FreeAssange @fascismcantwin
278 Followers 1K Following My body is materially disabled. MECFS, EDS, & more.
Kara McNair 🌊💉 @karamcnair
1K Followers 4K Following You are very small & slow & I am training my cats to eat you;"devious and well meaning genius"; @[email protected]
cara @athingtoflout
89 Followers 2K Following ‘when I could speak again it was from a bath of cool water; but first: I was kept a long time in a flame.’ chronic pain person/anti-eugenics ❤️🔥
Pauline boyd @princesspenny62
421 Followers 4K Following Busy trying to save my life from a Fatal disease from Toxic mold in my Rental home. Owner fatally poisondd me and Retailiaton horroibly for the last 5 years
PurpleSpeedwell purpl.. @PurpleSpeedwell
763 Followers 666 Following Housebound, mostly bedridden with Myalgic Encephalomyelitis, a devastating illness with little funding and no treatment. [email protected]
Elizabeth Ansell @elizansell
688 Followers 2K Following Founder @njfatigue. Previously at Showtime and ABC News, among other places. Quit career due to #MECFS. This is #NotJustFatigue.
Kendra F @SurvivingCFS
4K Followers 5K Following Disabled for a decade due to MECFS| Escaped homelessness | I’m advocating for those who can’t | See highlights tab for my free masking and disability art.
LOLA_WhatWouldLolaDo_.. @whatwouldlolado
106 Followers 583 Following Lola 📚 | Homeschooling & Wellness Advocate | UGC Creator | Sharing the joys & challenges of homeschool, health, and small biz life. FREE self care journal ⬇️
JJ @felixkitten82
181 Followers 3K Following ME/CFS, HSD/hEDS, POTS +more fighter. My world is full of acronyms. Crazy Cat Lady. STP lover. Ex-aspiring medic, ex-singer, ex-mostthingsrightnow.
Lisa Segel @Lisasegel3
661 Followers 1K Following human rts advocate, animal rescue/rehabilitation, retired (too soon) attorney/discrimination 💙 down with #ME but not gone.
bethereificould @bethereificould
605 Followers 1K Following A mirrorbox and map taking messages from people with ME/CFS or long COVID to places they love but can no longer get to #ACEsupported #socialart #missingmillions
#MillionsMissingDenma.. @MillionsMissin2
2K Followers 4K Following
Dances with Spiders�.. @lisaros33347477
2K Followers 3K Following Dem-socialist in the Elf-Help industry. Have ME/CFS-Long Covid ally Conservative free zone. Mask up for collective good. Trudeau rocks!
David Gilbert 🇪�.. @DavidGilbert43
8K Followers 5K Following Poetry - Birds and Trees - Football #lufc - Justice - Rebuilding
Faithless @FaithOxenbridge
2K Followers 3K Following Tired of defending my reality. Vax induced ME (still pro Vax) Bedbound. Not tired; sick. Used to write & teach. Here for the research and outrage.
Puff @ApeinAB
696 Followers 2K Following There and Back, flat lined and returned every day is a gift! appreciate even the small things... I'm completely broken but trying to be positive
Reclaiming Our Health @figuringitout97
682 Followers 2K Following Alt account to protect privacy. Long-haul Covid. 4x Covid, first time March 2020. Wake up people! 🚨🚨 Wear #N95 #FBLC.
TheDivaMissKaye @KayeEsso
77 Followers 232 Following Lifelong Albertan, socially progressive democratic socialist, animal lover #sickoftheUCP #pride #ally #supportABdocs #invisibleillness 🇨🇦🏳️🌈🎶🎤🐱🐶🦔
Chronically Ill 20’.. @ChronicIll20s
17 Followers 44 Following -I’ve been living with chronic illnesses for over 10 years -If I can make it through my 20’s living with chronic illness, SO CAN YOU!
Long Covid Advocacy I.. @LCAIreland
2K Followers 3K Following The voice for Long Covid in Ireland. An advocacy group comprised of Long Covid patients fighting for awareness of LC & adequate services in Ire for all patients
Ina • me/cfs @tink_ina
822 Followers 288 Following #mecfs 12 years, severe. bedbound w near fatal spine injury causing a yet to be diagnosed neuromuscular condition. 🇸🇪
Vikram Jha @invinciblejha
3K Followers 5K Following Founder & CEO @puchodigihealth. Working towards patient Centered #longcovid research for diagnostic,care & treatment. #Healthequity
Marilyn Gavranovic @marilyngavrano1
684 Followers 350 Following Mum, Grandma, Advocate for Mother Nature & Human Rights; Disability Support Worker, Teacher- retired
MumME @pamrosling
1K Followers 5K Following Mum & carer to severely Covid-vaccine-injured daughter desperate for treatment to get her life back :-( Also passionate about climate and biodiversity crisis.
Sarah O'Connell @SarahOC_MECFS
4K Followers 4K Following ME #pwME patient 10 yrs & mum of 2 with ME, #LongCovid & PANS • ME & LC Advocate • Co-Founder LCAI • Women's Health; Endometriosis,PMDD • Sci-fi & movie lover
Prof. Michael Sharpe .. @SharpeParody
384 Followers 360 Following The unconscious ramblings of an errant Oxbridge Professor. I am right no matter what anyone says! Change your mind Change your world ✨✨✨
Encephalogirl @EncephaloME
506 Followers 852 Following Former scientist, beekeeper, weightlifter, hiker…former everything #MECFS #PID ♿️
Friesein @Friesein
8K Followers 6K Following Clean air is a human right. SARS2 is a severe pathogen disabling millions. Let's use scientific modeling and engineering to solve both. Listen to patients.
John M. Binford @binford_m007
3K Followers 5K Following Falls down a lot, Internet fans, Tv expart, Social media junkie, gaming.
Samantha Atkinson ✝.. @sammyj1966
2K Followers 4K Following Lipreader . M.E. since '92. Christian. Like history, animals, steam locos, historical romance books. Married to a Yorkshireman. Have a hamster 🐹and a dog 🐶
Josie 🇦🇺🇮�.. @ESLteacherMelb
693 Followers 3K Following I'm a passionate ESL teacher, now working online (due to Covid). Coeliac. Suffered from CFS. Fairness, social justice and kindness are important to me.
Margita Kleye @KleyeMargita
206 Followers 2K Following
Laura Arensdorf @lkarens
342 Followers 5K Following
lakershotpot @LakersStirFry
91 Followers 3K Following
Ancient Relic @relic7575
760 Followers 708 Following Retired RN, rural nursing. L&D, NSY, PP. From Alaska, now in Florida. I’ll be enjoying the Disney Parks again when it’s safe.
Elizabeth•Ελισ�.. @Lizzie_efkp
192 Followers 1K Following LONG COVID since August 2021🤕 • stuck here 🏠 • mostly horizontal 🛏️🛋️ • You can forget about me, but you can’t erase me💪
FRΛNK|MΞYΞR | frv@.. @F_Meyer_Nr10
390 Followers 760 Following ⏸️Editor | Freier Redakteur | Content Creator⏸️ PC-/Hardware-Enthusiast 🛑war mal (sehr)sportlich🏐 jetzt lost🛑 #MECFS #Brainfog #SFN #HidradenitisSuppurativa
Jennifer Pollock @zebraland
309 Followers 968 Following Toronto-based health and entertainment writer. Books, film, health and general randomness here. Hello, Alan Ball.
meryl griffith @meryl_mg
915 Followers 5K Following Biomedical Scientist... Transfusion Science, Haematology, Biochemistry, Microbiology. CFS patient. RRV 🦟 all things ME/CFS & Whole Genome Sequencing
Majbritt Karlsson @MajbrittKarlsso
61 Followers 434 Following Me, fibromyalgi Glad positiv älskar djur och natur hatar onda och elaka människor
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Anil van der Zee © @AnilvanderZee
9K Followers 824 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Eric Topol @EricTopol
694K Followers 590 Following physician-scientist, author, editor. Ground Truths: https://t.co/YhatcBT0hA
Adam @ABrokenBattery
6K Followers 1K Following Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.
Julie Rehmeyer @julierehmeyer
8K Followers 1K Following Author of Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand. NYT; WashPost; Discover; Slate; Stat News… She/her.
Dr Keith Geraghty @keithgeraghty
9K Followers 500 Following Research Fellow | Primary Care, Medical & Health Psychology | People-focused, evidence-based | @FBMH_UoM, @PrimaryCareMcr
Michael VanElzakker @MBVanElzakker
10K Followers 290 Following Neuroscience researcher @MGHMartinos / @HarvardMed and @PolyBioRF, researching #MEcfs, #LongCOVID, & #PTSD. (all opinions are my own)
Ben H @benh_mecfs
6K Followers 3K Following ME/CFS patient advocate, @OpenMedF science correspondent. Bedbound. Former: biochemist in training, Powerlifter, PT, Gym Manager. Jazz grad/Musician. F1/Boxing.
4mm documentary film @4mmfilm
329 Followers 2 Following A new film by @jenbrea. #mecfs #EDS #pots #longcovid #mcas Website: https://t.co/oTQsefmKw5 Social: https://t.co/mRMnafntZn Coming 2026 (or 7).
George Civeris @georgeciveris
26K Followers 1K Following Comedian, co-host @straightiolab, former editor @gawker. Let's do this!
Thane Black @thane_black
7K Followers 188 Following 'Kindly let me help you or you will drown said the monkey putting the fish safely up a tree' #SevereME
Kags ❇ 😷 #LongVZ.. @Klang764
1K Followers 2K Following ME (not cfs) for 24 years,severe for the last 4. Socialist, despise Tories with every fibre of my being.
Margherita @margheritaandME
837 Followers 794 Following Two-time cancer survivor (Hodgkin lymphoma) now living with #ME, #PoTS and #hEDS since 2016, mostly house/bedbound. Wife, mother of 2 (8 and 10), dog owner 🐶
Adam Grant @AdamMGrant
854K Followers 965 Following Organizational psychologist @Wharton. #1 NYT bestsellers: HIDDEN POTENTIAL, THINK AGAIN. Podcasts: Re:Thinking & WorkLife @TEDTalks. Diver.
Ben Marshall @notbenmarshall
125K Followers 1K Following please don't destroy and @nbcsnl // https://t.co/MQQ3RwJ2vo
WeRateDogs @dog_rates
9.2M Followers 25 Following Your Only Source For Professional Dog Ratings Instagram and Facebook ➜ WeRateDogs [email protected] | nonprofit: @15outof10 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Dylan O'Brien @dylanobrien
5.9M Followers 2K Following you can contact me at my imdb page which is conveniently linked below
Divinely Crafty @DivinelyCrafty
680 Followers 1K Following Artist, Activist, Traveler and Disabled Badass. (she/her) Please donate to my Medical Fundraiser https://t.co/hBGnlR5ZI6
Stephen Fishbach @stephenfishbach
63K Followers 997 Following 2x Survivor loser. Pushcart Prize and Story Foundation Prize-winning writer. Host of the Paraphrase podcast. Your retweets of me are endorsements.
Tom Pelphrey @TomPelphrey
28K Followers 419 Following Tom is an actor that was born and raised in New Jersey.
Jacob Kaplan @JacobKaplan17
11K Followers 490 Following Writer, comedian, very good at Teddy Roosevelt and Full House trivia.
Garrett Werner @ohgr8itsgarrett
11K Followers 230 Following America's only 7x Powerball Jackpot winner
grace spelman @GraceSpelman
127K Followers 1K Following
caleb hearon @calebsaysthings
257K Followers 1K Following beloved gay comedian with perfect opinions and a heart of gold. many, many accolades.
Margaret Laverick @margaretlav
754 Followers 819 Following Retired and supporting Invest in ME Research. Caring for my daughter diagnosed with ME 1998, now severe and bed bound. Biomedical research needed NOW.
Ben Yahr @benyahr
45K Followers 5K Following Goofball | Actress | Short King | Lip Sync Assassin | https://t.co/SBBodiWsjM
Emily Favreau @emilyfavreau
92K Followers 2K Following mom to human baby, Charlie and goldendoodle baby, Leo. tweets are mostly puppies and politics.
Julia Claire @ohJuliatweets
49K Followers 1K Following writer of screeds/jokes @crookedmedia, all of my teeth are real.
Bailey Warren @FirstDogBailey
41K Followers 1 Following Bailey - @ewarren’s golden boi. Consumer watchdog / campaign furrogate / burrito thief. (fan account 🐕)
Priyanka Aribindi @priaribi
62K Followers 1K Following I cohost What A Day @crookedmedia & write a newsletter about things I like that you will too: https://t.co/1J3Pjxj5GD
Anne Helen Petersen @annehelen
138K Followers 1K Following I write Culture Study & also books — most recently, OUT OF OFFICE. Speaking: @prhspeakers IG: annehelenpetersen // email: annehelenpetersen @ gmail
Sam Stryker @sbstryker
93K Followers 1K Following Prev. social @twitter editorial @BuzzFeed … Take Fountain!
Ashley Feinberg (ashl.. @ashleyfeinberg
209K Followers 1K Following taking a break from stuff, [email protected]
Chase Mitchell @ChaseMit
91K Followers 3K Following Writer for hire, formerly of @insidejob, @FallonTonight, and one time for an aftershow about sharks
Chris Reinacher @chrisreinacher
65K Followers 886 Following Actor / Writer / Producer / Internet Thug
My Hormones Magazine @HormonesMy
620 Followers 814 Following A brand new print & digital magazine launching 2019. We've done the research for you from #puberty to #menopause and everything inbetween.
Dr Anne Henderson @GynaeExpert
5K Followers 679 Following Consultant Gynaecologist. Director @TheAmaraClinic. @BrMenopauseSoc Accredited Specialist. Medico-legal Expert. Passionate about women’s health. Views my own.
Marion Gluck Clinic @DrGluckClinic
668 Followers 517 Following The Marion Gluck Clinic specialises in bio-identical hormone therapy. We are a bespoke clinic that aims to restore patients to their optimal health.
Hormone Equilibrium @HormoneEquilib
2K Followers 1K Following GP. BMS accredited Menopause Specialist. Women’s Health. Nutrition. Co-author of ‘The Complete Guide to POI and Early Menopause’ 📙
jeffy jeff 69 🇵�.. @AntonakosJeff
84 Followers 119 Following heavily around my throat I don’t play. shit brand new, back in 89 the same way
Kira @kirafae
145 Followers 310 Following Fundraising to screw my head on. https://t.co/MQ2YrbLK9q #EhlersDanlos #POTS #CCI #Chiari #Syringomyelia #OTC #MCAS
rachel syme @rachsyme
142K Followers 9K Following woman about town. staff writer @newyorker. also: writing a book for @aaknopf + a coffee table book for @penguinrandom. away from here, mostly.
lauren lipsay @laurenlipsay
2K Followers 2K Following lurking before I leave • music, beauty, internet nonsense
Jia Tolentino @jiatolentino
159K Followers 928 Following Rosie Perez in the credits of Do The Right Thing / writer @newyorker / author of Trick Mirror
Kate Aurthur @KateAurthur
35K Followers 2K Following Editor-At-Large, Variety. Past: BuzzFeed News, The Daily Beast, Los Angeles Times, survived cancer (so far!). If you follow me here, do follow me on Threads!@daisy_court75 @chydorina That's so interesting I wonder why this is the case for some of us
I’m angry for my severe friends who feel completely powerless, helpless, and scared. Their families are abusing some of them, their parents don’t believe them, they don’t care for them, they don’t make efforts to protect them.
it's so unfair I only got 22 years. TWENTY TWO YEARS. there was so much I wanted to accomplish. So many things I wanted to do. Places I wanted to see. I always thought I would have more time.
Long Covid and ME/CFS both have decreased cerebral blood flow, impaired cerebral autoregulation, and widespread endothelial dysfunction. Both diseases have a massive autonomic signaling problem to the body’s endothelium. This needs to be investigated immediately.
The doctors were mostly impediments. Other patients led me to my answers. Similar trajectory with MECFS after Covid. 4/
If I never recover, I died at 38. No matter how long I live
It’s the one year anniversary of when nattokinase made me very severe overnight, and I mostly have no memories of the past year because it’s been a black hole of suffering. I feel myself breaking today. I want to scream myself back to health, but there is no path to health
I can’t stop thinking about the possibility that I might die soon—from a reinfection, a relapse, or a bad reaction to a medication—and I swear to god, if I die at 28, I will unleash my enraged spirit to haunt each and every covid minimiser and ME denier forever
Feeling super hopeless about my situation, I'm getting weaker day by day and have no more options. I've tried everything available to me but nothing even slightly slows the decline into very severe #MECFS
Was thinking last night about how I used to be a much happier person before 2020, before I realised how many people in my life just don’t give a shit about disabled people. I really don’t know how to make sense of the last 4 years, or how to communicate what it’s done to me.
In the end, we haven’t just lost health and lives. Our ethics and morals have been degraded. We are worse people. And as a worse, less caring society, we are much less secure as potentially vulnerable individuals in the face of future threats requiring collective action.
Within that there is also the trauma of being on the receiving end of that (increased) societal abandonment. None of this is to suggest the US was an empathetic and compassionate society, but we managed to become worse. And that’s still painful today.
If there is any unexamined trauma we ought to name and process, it’s the trauma of being resocialized to no longer worry about inadvertently harming vulnerable loved ones and community members, the requirement to subvert empathy and compassion in order to fit in and feel accepted
Thinking back to the 1st few months of #LongCOVID, when my husband came home to find me crumpled in a ball on the floor, crying, saying "I'm sick EVERY DAY. I can't live like this." Yet here I am 3+ yrs in, living like this. Amazing what the body can endure & still survive.
💫 How can I thank all of you who have reached out with love and kindness when I said I felt unseen and was depressed. I’m overwhelmed. I’m sitting in the company and caring of so many, realizing I’m not alone, and needing to say much more than thank you. Kindness abounds. 💛🩷💫
After 5 months of not leaving the house Mum took me out for a drive. Put the seat down so I could be more horizontal. Had ice cream and saw the delights of Ruislip and Northwood. Feeling it now! I just had to get out.
The most unique thing about Long Covid is that it is happening within a historical context in which very ill patients actually have a voice
The reason people with Long Covid and ME/CFS tend to generally feel better at night is because the Autonomic Nervous System is less active during the evening hours and that means less dysfunction and can lead to less symptoms. #LongCovid #pwME #MECFS #Pots
Trends for United States
You might like
