Chronic Fatigue Barbie @FatigueBarbie
💕 I’m a barbie girl in my chronic fatigue world 💕 Current: #mecfs #pots Previously: lawyer + actor Trying to find joy in the void 💖 Alberta, Canada Joined July 2022-
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Ok. One last time: #LongCOVID, #PEM and exercise. Let's talk and I'll try to be REAL clear and REAL simple. If someone has PEM, exercise is contraindicated. Not only do you not prescribe/suggest exercise, you recommend avoiding exercise. That's it. Simple. No gray area. Why? 1/
Anyone else find their twitches come in patterns? Twitches kicked up in my left bicep today then hours later right bicep… curious what that might suggest for underlying cause. Is this brain stem driven?
I miss: driving home late at night after a night out/yoga class/working on set/a fun date. The quieter roads, city lights, music on my stereo, window down for the crisp night breeze. Instead I lay in bed #Missing #MillionsMissing #MECFS
The NICE guidelines state that ppl with #severeME may need an extremely low level of stimulation, someone to communicate for them, and a feeding tube. Yet Millie is detained in an excruciating environment, forced to communicate herself, and denied a feeding tube #BringMillieHome
Anybody else being plagued with a migraine this weekend? Is this somehow weirdly linked to the eclipse? Scientifically I don’t see how that could be… but also 🤕
I need non-disabled people to understand something. There are millions of chronically ill and disabled people not going to the doctor or ER right now because of mask mandates dropping. Cancer patients, transplant patients, patients in kidney failure, patients like me.
“I don’t know if I can be amazing today. I’m too exhausted from being amazing yesterday” 😅 #pem instagram.com/reel/C3YWStBiq…
Can’t decide which is more awful w ME/LC: * missing the good “life stuff” * the extra struggle when dealing w bad “life stuff” Dealing w extra hard life stuff today 💔 Using imaginary spoons to get through
If you’ve ever thought that chronically ill/disabled people enjoy being stuck at home, can you think back to a time when maybe you had the flu and had to stay home? Did you have fun? I know I didn’t.
Experiencing intense “effort preference” tonight aka I would PREFER to move but in spite of best effort, my limbs are lead and I needed assistance to get to my bed … it does make sense how this could be linked to a motor cortex/neurological issue But it ain’t “preference”!
How to support Millie in the UK who is currently at risk of dying. She is no longer sectioned but they STILL will not give her a feeding tube. 😱 IF you have the energy please send Millie a card showing solidarity and support so Millie knows we care about her and the hospital…
Yesterday: feeling decent, I think I’m starting to recover! Started planning return to work/life… Today: Bad crash! for the first time in my illness, had to have Mom wash my hair 😔 Not sure which is worse - the crashes themselves or the unpredictability 😒
meanwhile I met a person who is part of the BC007 study. This person is healed. I mean healthy as before. 🥺 please peoples, hang in there! We must stay around another year or two! For some of us, BC007 will be the cure. ❤️🩹
Crashed hard Friday. It was a « dark, quiet room only » crash. For comfort, I put on a (quiet) YT of purring. Surprisingly soothing! Fast forward to Sunday: this sweet snuggly kitty arrives via Amazon! Mom thought I might like soft snuggles for my next bad crash 🥹🤍 #mecfs
"The Experiment We All Wish We Had Been Able To Do" Maybe someone did it - recognized in the first weeks or months that they were on the cusp of a new sickness reality and they STOPPED PUSHING. *They immediately started basic treatment for MCAS and POTS. *They optimized their…
As a (former?) singer with #mecfs , my heart is aching watching Beiber’s recent performance. He clearly is so excited to be performing again… and he also has a stool he keeps sitting on… If you have #longcovid or #mecfs , you know where I’m going with this 😢
I read this earlier today and realized: this is exactly how I've been coping with the pandemic and long COVID. 🧵 The Stockdale Paradox refers to Admiral Jim Stockdale, who was the highest-ranking United States military officer in the ’Hanoi Hilton’ prisoner-of-war camp 1/12
Daphne 🍌 @Daphne4349
4 Followers 444 Following Sеduсtive goddеss ravishingly beаutiful and ready fоr plеаsure
Charlie Park (she/the.. @MeanderingPark
3K Followers 1K Following Meanders about 🌈 Autism 🥄 Chronic illness 🐱 Cats ♿ Disability 😷 Avoiding COVID
Elizabeth Ansell @elizansell
681 Followers 2K Following Founder @njfatigue. Previously at Showtime and ABC News, among other places. Quit career due to #MECFS. This is #NotJustFatigue.
Jesus Kit @JesusKit129595
82 Followers 1K Following
Albert @mkklmlc
3 Followers 58 Following 26. Designer. Thought I would make an account to keep up with all things LC and connect with other long haulers 🙇♂️❤️ #longcovid
Helen Anderson 🇪�.. @Helen_biochem
2K Followers 3K Following #MECFS #LongCovid #POTS Former Biomedical Scientist. Anti-Tories #GTT0 🇪🇺#FBPE NHS💙 My son has LC/PoTS
Lisa Segel @Lisasegel3
652 Followers 1K Following cat & dog rescue, human rts advocate, retired attorney/discrimination. 💙down with #ME but not gone.
Rea Lastine @LastineRea
54 Followers 289 Following mom, math nerd and ultra runner in CO. #Atheist #exadventist and “homeschooled”
María Richardson @_diatoma
2K Followers 5K Following ES-EN. I write, I teach, I draw plants. Chronically ill en la Ciudad de México. #Renegade50 with #RemissionBiome. Ella/she/her.
MoleyMECaroline🦔 @tweetingmole
2K Followers 3K Following feel like a mole living in a dark ME/CFS hole sharing thoughts ,trying to make a small difference. Lancs U.K. - #bekind also @MoleyME.bsky.social
Pinakoolada @pinakooklada
1K Followers 182 Following 20s | Long Covid since 01/2021 | #notrecovered | design student | hobbyartist ༺◦༻
Sonia Monette @SoniaMonette
910 Followers 1K Following ME/CFS, POTS, French, English, Montreal 🇨🇦. LGBTQ+🏳️🌈🏳️⚧️ ☮️ NO TERFS OR MAGAS 🤢
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
Emma, thechronicsurvi.. @chronicsurv1vor
58K Followers 45K Following Aspiring Author ✍🏼📖 |Singer/Actress, Trainee Therapist on hold due to #MECFS ♿️ for 6 years | #POTS / #IST✨Spiritual Awakening. Lessons from the void. 💖
Jane Marple ♿ 🇵�.. @Arianrhod11
3K Followers 4K Following #pwME #MyalgicE triggered by 2nd #AZ 💉#MyalgicEncephalomyelitis #vaccineinjured Loved & miss 🏊🚣🏄🚵🤸🛶🥋🚶🛼🎶
Luna @PaperJamLuna
902 Followers 2K Following Dislike exploitation of precarity and its enabler, incrementalism. Here mostly to read. Wearing N95s or better; using Smart Air Blast, Levoit, & Coway. #pwME
A Tired Owl @aTiredOwl
1K Followers 3K Following #MaskUp #MyalgicEncephalomyelitis LC ally. Networking with #pwME and other chronic illnesses. ⒶⓋ
MonzaMayhem @MayhemMonza
663 Followers 2K Following Mother of child with ME/CFS. Trying to create moments of joy in a challenging life.
Steve Chalmers @FStevenChalmers
1K Followers 3K Following Let's tear down silo walls in the data center. Spent a decade each in servers and storage, then networking. Consultant to Daedaelus Corp. Retired from HPE.
gabe whoops @gabe_hoops
360 Followers 376 Following came here for basketball then got Long C no it wasn't the vaxx, they didn't exist yet itchy block finger
☆Keely Valentine @keelyvalentine
3K Followers 3K Following ☆SingerSongwriter/Streamer/K-pop DJ/Cosplayer❤️ Twitch Pokémon TCG streamer check my shop https://t.co/wZ0E10P8Kz❤️spotify/apple❤️❤️ ME/CFS and EDS suck :(
Pete Caruso @PeteCaruso_
436 Followers 852 Following Find treatments for Long Covid, ME, VaxInjury, POTS, & Sjogrens chronic illnesses. Tweeting for spouse, ME survivor of 25+ years. @petecaruso.bsky.social
Bill Bottrell @BillBottrell
2K Followers 490 Following Retired from music 2009 due to #mecfs. Rural country squire. Between crashes I work my land.
CranioCervicalInstabi.. @CranioUnstable
627 Followers 3K Following My entire adult life has been a daily struggle with #cervicalspine instabi(ity symptoms, and now totally disabling and untreated #CCI and #MECFS. Please help!
Amanda Finley Digs Al.. @rubyslippahs
6K Followers 6K Following 💙💛 COVID long-hauler, archaeologist, STEM teacher, opera singer, Lego engineer, homeless, scientists, kids, dogs, astronomy She/her/hers. Go, Isotopes.
Carly Louise💙🏳�.. @ChronicalyCarly
2K Followers 3K Following she/her 🧑🦼 I HATE HATE🌈 I ❤️ CONCERTS Lyme Disease & Mold changed my life forever... but when I can live, I do.
ME Foggy Dog 💙 @MEFoggyDog
7K Followers 4K Following Award-winning #socialenterprise in #UK. Working for #socialchange for the #MECFS community. Linktree - https://t.co/TNEwofcNnm
Cam Regier @CamRegier
2K Followers 1K Following Husband, Father, Engineer, Buildings Nerd, LongCOVID. Views are my own. Likes and retweets are not endorsements.
Andy Spark @AndySpark25
100 Followers 76 Following
RosA 🇨🇦😷 @journeycatz
1K Followers 4K Following Mother, wife and teacher on the West Coast 🇨🇦 Vegetarian. Still choosing to stay informed to protect myself and others 😷💉 @journeycatz.bsky.social
Kyle @kylofone
500 Followers 930 Following used to spend a lot of time listening to loud guitars. now i mostly drink cinnamon tea. carer for my partner with very severe ME / Long Covid
Sammie McFarland @SammieFMc
2K Followers 2K Following Founder @longcovidkids 🫀#LongCovid “Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
Jen M. @JenM91500106
509 Followers 438 Following Suffering from POTS and ME/CFS triggered by the Moderna vaccine (4/24/21). Would like to rejoin the living.
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
a tired human @saffronandsky
1K Followers 1K Following disability justice💜 mod. chronic illness for decades+long covid in '22 =severe MCAS, ME+POTs= bedbound. Parent, mixed race, writer, former gardener ♿ 🏳️🌈☸️
Hassan Khader Ali You.. @hassankhaderali
1K Followers 1K Following SOS: Hassan Khader Ali,from Yemen.Suffering from muscle dystrophy,I appreciate your help in my long struggle to keep going. #chronicillness #MuscularDystrophy
Nellie @nellie_oconnor_
213 Followers 3K Following
Helen Walker @helenmwalker44
658 Followers 1K Following UK Myotonic Dystrophy and UK FSHD Patient Registry Manager and Curator (she/her) *Views my own* #neuromuscular #PatientRegistries #dm1 #dm2 #fshd #RareDisease
Ramy2.0 @Ramyisback
1K Followers 701 Following I am back from the twitter grave, with memes, and other stuff about mecfs and long covid.
Melissa @melissa69campos
193 Followers 3K Following
Rob O'Brien @robwriting
3K Followers 3K Following Br-Australian writer, filmmaker. Stories for @Independent @Nikkeiasia @Penthouse @nytimes. I also write speeches. #MECFS foot soldier.
Long Covid Sufferer M.. @LCsuffererMECFS
2K Followers 2K Following Diagnosed with #MECFS and #POTS. Looking for a treatment. #Dysautonomia #Millionsmissing #LongHauler #LongCovid #Apheresis #SteroidPulse #IVIG #BC007 #Rituximab
Gary Robinson @lessorfewer
929 Followers 2K Following PhD geography: money & finance • Life mostly on hold from #LongCovid 03/2021 개리말고 가리
Kirstie Sivapalan @KirstieSivaP
3K Followers 2K Following Making a noise about the injustices & lack of support for #pwME #LongCovid 💙 @[email protected] 🐘 @KirstieSivap 🐳 @kirstiesivapalan 🧵
Slapchop 🇵🇸 @SplendidSpeseia
640 Followers 756 Following Chronic illness biohacker/self-experimenter. Psychonaught when able. Disabled by ME/CFS. Daoist, Marxist, Trans 🏳️⚧ She/They. Embrace the Void 🤩😵💫🤩
Agy Lena 🏳️�.. @agy_lena
9K Followers 290 Following Ex athlete, biker, climber, 1st class biomedicine grad. Entire life lost 2017 post viral ME/CFS. C💉injured 2021 thus turned from pro to anti vax
Rick Bright @RickABright
47K Followers 3K Following Practical, Innovative, Hyper-focused on saving lives. Immunologist, Virologist, Pandemic Nemesis. Posts are mine.
Lauren Pelley @LaurenPelley
32K Followers 2K Following Senior Health & Medical Reporter at @CBCNews | “As journalists, we need both a soul and a spine.” —Marty Baron | ✉ [email protected]
Kimberly Prather, Ph... @kprather88
94K Followers 6K Following Scientist who loves to read, cook, and garden. Research on airborne disease transmission, aerosol impacts on climate and indoor/outdoor air quality. Scicomm.
SARS Safe Socials @sarssafesocials
892 Followers 236 Following Hosting reoccurring virtual events for people focused on masking as one aspect of their decolonization praxis. (Run by @GoddessTriV and @fangtasticbaby )
UniteToFight2024 @U2Fight_World
3K Followers 121 Following 100% crowdfunded LC & ME/CFS conference project. community-driven. independent. global.
Lisa Oshima @lisawhelan
4K Followers 5K Following Consultant helping tech cos grow via strategy & partnerships. Tweet on emerging tech & viral growth. Pro tech & science. Clean indoor air. Make schools safe.
babs @halfateaspn
201 Followers 550 Following 20s. she/her. disabled, queer and poc. ME/CFS and comorbidities. mostly bedbound. no bigots. be kind. 🇵🇸🏳️🌈🏳️⚧️
Blonde Emergency MD �.. @blondemedSJW
12K Followers 1K Following EM PGY3. Intersectional feminist, self proclaimed "SJW." She/her pronouns. Opinions are my own. #medtwitter
🌙Becca🔮 @2dreamornot2
1K Followers 487 Following ✨artist✨ perpetually on empty 🔋(ME/CFS) ♿️ now on wheels 🌈 neuroqueer (they/them) angry Crip 😈
G Peters 👩🏻�.. @mssinenomine
17K Followers 9K Following Anyone who says you can't change the way things are is probably either afraid you will or ashamed they didn't try.
Charlie Park (she/the.. @MeanderingPark
3K Followers 1K Following Meanders about 🌈 Autism 🥄 Chronic illness 🐱 Cats ♿ Disability 😷 Avoiding COVID
Anne Vroegindeweij @thisistheillme
2K Followers 1K Following PEMfluencer | Author of 'De achterblijvers' about #longcovid (book & e-reader & audiobook out now) | Tweets in 🇬🇧 & 🇳🇱 | 🏳️🌈
InvisibleGLove @GoreLloyd
448 Followers 728 Following DELTA-qualified EAL teacher; previously in EFL, ESOL and EAP (and subtitling). Caregiver to partner with v severe ME from Long Covid She / her
E 🇵🇸 @genderlessflesh
1K Followers 673 Following chronically ill with ME & LC. proud dog & cat dad. white, queer/non-binary/trans. they/them/theirs me and @fightcovidnola give out free masks ❤️
Elizabeth Ansell @elizansell
681 Followers 2K Following Founder @njfatigue. Previously at Showtime and ABC News, among other places. Quit career due to #MECFS. This is #NotJustFatigue.
Bruce K. Patterson MD @brucep13
22K Followers 94 Following Bruce K. Patterson MD, CEO IncellDx, Previously Assoc Prof Stanford School of Medicine
Dryostradamus MD MPH .. @dryostradamus
104 Followers 43 Following Getting my 💔 by the NY Mets. Sometimes I push propofol and write a research paper. Sometimes chat about medical stuff. I am back from a North Korean gulag!
Erin Godwin @ErinAPN1
3K Followers 3K Following Mam to daughter battling severe Long Covid. Grasping at answers blowing in the wind. Journo who left media frypan to jump into the law world fire.
Anneke @littleann4ever
2K Followers 2K Following Parent. Advocate. Writer. Still pushing for safe schools & C19 truths. #LongCovid #LongCovidKids #CovidIsAirborne https://t.co/qOAeOyjtan
longcovidstudies @lcstudiesdotnet
287 Followers 0 Following Long Covid Studies makes it easy to find Long Covid research studies near you.
Jeremy Jeffs @magnetoJJ
1K Followers 2K Following Director at Magneto FIlms, making films for not for profits. Currently shooting photos of #PwME. Living with #ME since 1987
Jeff Gilchrist @jeffgilchrist
36K Followers 405 Following PhD Biomedical researcher, data scientist, and finder of large prime numbers. Views are my own. @[email protected] @jeffgilchrist.bsky.social
Helen Anderson 🇪�.. @Helen_biochem
2K Followers 3K Following #MECFS #LongCovid #POTS Former Biomedical Scientist. Anti-Tories #GTT0 🇪🇺#FBPE NHS💙 My son has LC/PoTS
Prognostic Chats @PrognosticChats
9K Followers 221 Following NHS Consultant doctor 🩺 Navigating #Covid & sharing the published studies so you can navigate as best you can too #LongCovid & frontline updates
Lisa Segel @Lisasegel3
652 Followers 1K Following cat & dog rescue, human rts advocate, retired attorney/discrimination. 💙down with #ME but not gone.
Dr. Lucky Tran @luckytran
70K Followers 4K Following 📢 Public Health, Climate Justice, and Science Communication 🎓 Columbia, Cornell, Cambridge, Adelaide ➡️ Find me on other websites: https://t.co/yvBIYKMcGF
jaclyn @j_n_foster
13K Followers 4K Following genetics BS➡️history MA➡️PharmD student | 🌈👩👩👧👦 | 🇨🇦➡️🇺🇸 | antimicrobial stewardship 🦠 | what you get when you order “pharmacist” on Wish | any/all
Dr. Asha de Vos @ashadevos
23K Followers 3K Following Founder @OceanswellOrg, Adjunct Research Fellow @universityofwesternaustralia, @insidenatgeo Explorer,@tedfellow, @bbc100 2018; decolonising marine conservation
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
Trude Schei @t_schei
692 Followers 190 Following Architect with ME, patient advocate, ass.gen.sek i ME-foreningen, always exhausted
Antiviral Marketing @antiviral_mktng
4K Followers 938 Following Anti-COVID. Fit-test your respirator! PortaCount enthusiast. Reinfection control group. LC. 🌱Ⓐ🇵🇸. DMs are cool, say hi! @antiviral.bsky.social
Shiramina @Shiramina13
400 Followers 265 Following Twenty pounds of rage in a five pound bag. Vaxxed, boosted, and still masking. Disabled and collecting diagnoses like alphabet soup. She/They
María Richardson @_diatoma
2K Followers 5K Following ES-EN. I write, I teach, I draw plants. Chronically ill en la Ciudad de México. #Renegade50 with #RemissionBiome. Ella/she/her.
Craig Spencer MD MPH @Craig_A_Spencer
244K Followers 749 Following ER doctor | Ebola Survivor | Public Health & Humanitarian Response | Historical Foundations of Public Health Policy & Practice @Brown_SPH | Emmy Award Winner 🏆
Pinakoolada @pinakooklada
1K Followers 182 Following 20s | Long Covid since 01/2021 | #notrecovered | design student | hobbyartist ༺◦༻
Sonia Monette @SoniaMonette
910 Followers 1K Following ME/CFS, POTS, French, English, Montreal 🇨🇦. LGBTQ+🏳️🌈🏳️⚧️ ☮️ NO TERFS OR MAGAS 🤢
Rick MaskDonald MD �.. @Kidsdoc1Rick
11K Followers 3K Following Just a pediatrician. Husband,father to 3 boys & 1 good boi, lost in the woods when I can, cyclist, paddleboarder #Tweetiatrician
Julie Houston @JulesAHouston
2K Followers 2K Following Body malfunctioning since 1998. MECFS PoTS MCAS hypermobility. #LongCovid #LongCovidKids #Pans #Pandas ally. #CleanAirForAll #MasksInHealthcare
ME/CFS Research Found.. @MECFSResearch
1K Followers 226 Following Für mehr biomedizinische ME/CFS Forschung. Foundation for biomedical research on #MECFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).
Michael Stingl @neurostingl
16K Followers 1K Following Facharzt für Neurologie ME/CFS ▪ Long Covid ▪ Nervenultraschall ▪ ENG/EMG ▪ Hirngesundheit ▪ Telemedizin
In the abyss. v sever.. @AbyssPearl
513 Followers 169 Following On essaie de tenir le coup 🧠🫀 fighter. survivor. #mecfs, depanx, #pots, allergies & other. I'm one of the millions missing. chronic illness
Long Covid Patient Ac.. @LC_UK_Action
4K Followers 2K Following @[email protected] https://t.co/DlgXF9BQSe
Jane Marple ♿ 🇵�.. @Arianrhod11
3K Followers 4K Following #pwME #MyalgicE triggered by 2nd #AZ 💉#MyalgicEncephalomyelitis #vaccineinjured Loved & miss 🏊🚣🏄🚵🤸🛶🥋🚶🛼🎶
Long Covid Support �.. @long_covid
32K Followers 2K Following UK Charity • Support • Advocacy • Research Involvement • Awareness • Education • Keeping people with #LongCovid at the centre. #CureLongCovid
Kelly @broadwaybabyto
12K Followers 2K Following Disabled & chronically ill writer. Former theatre critic. Clean air is a human right & vulnerable people aren’t expendable. Covid is airborne 😷 #SpacesHost
Gerd 🇪🇺🇵🇸.. @FurusetGerden
4K Followers 1K Following https://t.co/IGhhpobA6p @FIVH @WWF @Europabevegelse @Naturvern @MEforeningen @ReddBarna https://t.co/hQg09xFAHc https://t.co/PppEbHUexD http://Palestinakomiteen.
Isabel Carrasco Sáen.. @IsabelC18904528
507 Followers 544 Following Mecfs patient. Mother of a very severe mecfs son (Bell 0).
Luna @PaperJamLuna
902 Followers 2K Following Dislike exploitation of precarity and its enabler, incrementalism. Here mostly to read. Wearing N95s or better; using Smart Air Blast, Levoit, & Coway. #pwME
Saying "excercise is important" to someone (bedbound) with #MEcfs or some other illnesses/disabilities is as pointless as saying "eating vegetables is important" to someone lost in the desert. We can't + it isn't the thing that's going to make the difference. We need other help.
I love David Putrino! ❤️
If you’ve been following me for a couple of weeks, you will know that I have cytokine preference in and around my Achilles. Despite my attempts to fix it and the incredible advice from the #LongCovid community, gently coaching me through screaming “STOP” at my foot, increasing 1/
Is there a theory on what causes this - poisoned, I’m dying, worst flu, shaking, I ran a marathon, am hungover, can’t move - feeling we get? When I was mild, I used to have days when that feeling disappeared. Now it’s always there and it’s unbearable. #MECFSisDeathinLife
Is there such a thing as chronic illness doulas?
Do ya’ll find “instant PEM” is an indicator of how you are doing? Today I am having instant PEM in my triceps while trying to type on my laptop. I’m in bed on pillows. But I feel the burning in my arms as I am typing. This means I better pull back asap or bad crash. #LongCovid
I hope everyone knows that because I am choosing to attend this event doesn't mean I don't care about those who cannot get out. As you can see, I am continuing to fight and call our @WHO and others for misinfo and improper protection of everyone. This is a terrible situation.
@FatigueBarbie your brain is also affected by this and that's a whole other thing, but what you're describing is localized nerve dysfunction. You can heal it all by supplementing as many diff forms of mag as you can tolerate in as many doses across the day as possible. youtu.be/1aQ1Fd42qHQ?si…
@FatigueBarbie yes…i’m hoping to make this make sense soon but i’ve proven this to myself— but it’s a small fiber neuropathy thing. our nerves are all connected to each other so they all travel to the brain/stem, but when these small fibers get in the way in our nerves/vessels🫀🥁➡️ twitch
Do yall get the “muscle failure” feeling with #PEM? Like even holding my phone makes my arms feel like I just did a super set of pull ups. Feels like my muscles are made of ashes. #muscleweakness doesn’t describe it. #longcovid #Moonshot
does anyone here get flu-like symptoms and a sore throat for no reason
Medical kidnapping is a moral crime that's happening in the US as well: patients with #MECFS, #Dysautonomia and #EDS appear to be at risk. Over the years, I've helped several patients to come home after being medically kidnapped: these cases were heartbreaking!
Millie needed a feeding tube for her #SevereME but instead she was told she had a psychological illness and can’t go home. How is this still happening in 2024? @gmcuk @RCPhysicians @rcpsych #BringMillieHome #DontLetMEDie bylinetimes.com/2024/03/19/a-r…
Does anyone else kind of gaslight themselves with this illness? Keep in mind I’m very severe/extremely severe…. I stood in the kitchen for 2 minutes and said to myself “I mustn’t be that bad if I can stand here for 2 minutes”…. No
Folks in #MECFS community are feeling left out of the #LongCovid Moon Shot legislative proposal after being neglected for 40+ years. You can provide feedback on the proposal by 4/23/24 by emailing [email protected]. More info: sanders.senate.gov/wp-content/upl…
“a private doctor has diagnosed Millie” “thought to be living with ME” There is no specialist NHS care for Severe ME patients anywhere in the UK. The only way a Severe ME patient can see an ME Dr is by going privately. #BringMillieHome #DontLetMEDie
Just want to say how happy I am to see so many Long Covid folks in my timeline today going to bat for *everyone* w/ infection associated chronic conditions. Stronger together 🩵💙
I was once detained in a hospital whilst as severe as Millie and it was actual torture. It caused me a suffering so intense as to be indescribable in words. Millie needs to go home immediately #BringMillieHome #DontLetMEDie
This is a big day for Millie & her family. In addition to the Twitterstorm at 11am, there will be a protest outside the RLI & her story will be covered by @ITVGranadaTV. Very grateful to @JoshuaStokesITV. Big thanks also to @NickyProctor @juancorlett who made this happen.
URGENT #BringMillieHome #DontLetMEDie We are in Lancaster at the request of Millie's family, Lucy and Abbie. We spent a few hours with them last night and they are amazing people. Why are we here? Watch below and sorry there's no captions 😔
Sympathetic Nervous System stimulates Mast Cells which triggers more sympathetic activation. Antihistamines do not help me much but a drug like ativan to help slow down sympathetic impulses would seem to help MCAS more. The Autonomic System is the culprit again 👍🏻
There’s a whole contingent of people with mild ME who are very public about the fact they’re disabled but almost never mention ME, and while I understand the desire to avoid stigma, those of us with more severe forms of the disease don’t have that luxury and need the solidarity
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