Austin Robert @ar_pnw
always tired | analyst | turning on the lights to the connection between #longcovid #mecfs #pots #mcas and connective tissue disorder related conditions #eds 💡 Seattle, WA 🌲 Joined March 2018-
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May is Ehlers-Danlos Syndromes Awareness Month. What are the Ehlers-Danlos syndromes (EDS)? The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that vary in how they affect the body and their genetic causes. 🧬 Variants in the…
Telling someone with PEM to exercise is like telling a person with Lung Cancer to smoke. Really fucking dropkick take, and dangerous af.
No.
Recent fluoroscopy and digital motion Xray confirmed atlantoaxial instability, lending support to the mechanical hypothesis of #MECFS, #LongCovid, & #PostVac. This finding underscores the profound insights of intuition—since the onset, I suspected a mechanical origin in the neck
CCI UPDATE: ‼️ So after a bunch of extra imaging (MRI and CT scans) and speaking with Dr. Gilete, he was able to officially diagnose me with CCI (cranio cervical Instability), AAI (atlantoaxial instability), and OTC (occult tethered cord). I had a positive response to traction.…
CCI UPDATE: ‼️ So after a bunch of extra imaging (MRI and CT scans) and speaking with Dr. Gilete, he was able to officially diagnose me with CCI (cranio cervical Instability), AAI (atlantoaxial instability), and OTC (occult tethered cord). I had a positive response to traction.…
Ah, the classic case of a medical professional downplaying real diagnoses. Zachary's got some catching up to do in the empathy and understanding department. Looks like bedside manner wasn't on the curriculum either.
We are seeing this at the @ChiariEDSCenter @MS_SouthNassau and are expanding the program - research, clinical, surgical, collaborative. New and improved website soon!
We are seeing this at the @ChiariEDSCenter @MS_SouthNassau and are expanding the program - research, clinical, surgical, collaborative. New and improved website soon!
More and more #longcovid patients, like #mecfs patients, are learning they have a connective tissue / structural problem that is most likely contributing to their neurological symptoms ⬇️⬇️⬇️
More and more #longcovid patients, like #mecfs patients, are learning they have a connective tissue / structural problem that is most likely contributing to their neurological symptoms ⬇️⬇️⬇️
Starting to see a pattern in patients who undergo jugular decompressions and their #POTS symptoms are greatly reduced or go away all together (self reported, of course!) 😅
In the context of #CCI, the ventrolateral medulla not only plays a role in BP and respiration but can contribute to development of autoimmunity as it catecholaminergic neurons have a role in T cell migration.
And those doctors are a waste of a white coat
And those doctors are a waste of a white coat
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
Karen Lubell @karenlubell
3K Followers 2K Following ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Daniel Brittain Dugge.. @dbdugger
15K Followers 6K Following HIV+ #LongCovid Advocate. Software Development. CJR Reform. SAND Scan.
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Brian Fog @useless_priest
6K Followers 5K Following Struggling to live, laugh, love in the midst of a global mass disabling event | #LongCOVID Apr 2022 | #MECFS #PostVac ally | 🏳️🌈 | 🇮🇪
Pam Bishop, PhD @pamelarbishop
10K Followers 3K Following Was research professor, now disabled by #LongCOVID (12/5/20) & subsequent #POTS #MECFS #MCAS #SFN #cSVD Patient advocate when able. Tell your story if you can.
T@Sunset @TeiaSunset
6K Followers 6K Following #LongCovid 2003/2020 / Cancer survivor. 🎵🎶Humming music, writing under trees watching sunsets.🏝️😻
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Eliana Uku @ElianaUku
3K Followers 532 Following #LongCovid patient (mar '20) incoming @StanfordGSB | ex @37angelsny @paypal @inturnhq
Patient-Led Research .. @patientled
27K Followers 616 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
Clare Daly @clarejdaly
6K Followers 1K Following Usually a #WomanInTech - Year 4 of #LongCovid (2020) | #MECFS (1993)
Dfrizz @Dfrizz007
315 Followers 221 Following 42y/o dealing with #longcovid #MECFS since May 9th 2021. Fucking A
SophiaMalachi @P75o2HKOUpiJis0
1 Followers 176 Following
Dana Herbert @danaherbert
809 Followers 899 Following Artist for #InformedConsent #KennedyShanahan2024 Dx: #MECFS #Narcolepsy #hEDS #LowT3 #UCTD #cPTSD How I escaped murder by dentist (so far) in CT, in link:
Hannah Giasson, PhD @HannahGiasson
482 Followers 1K Following Assistant Professor @ASU | Studying views of aging & late-life health & well-being | Previously @StanfordPsych Postdoc | @um_psychology & @BatesCollege alumna
OpheliaViolet @872wj8rb7ex9uYi
3 Followers 300 Following
VitaCrane @65E7o77M6O608
0 Followers 182 Following
RS @etaner1125
7 Followers 30 Following
Shappi @ShappiNios
0 Followers 255 Following
DoraWhyet @JG5q5ptgzq1jY
4 Followers 309 Following
😷 @_Trapitalism
1K Followers 4K Following midlife crisis'ing thru dystopia • liberate all oppressed ppls • dismantle oppression • confront reality & ur self • mask up & care 4 ppl • m.a. ethnic studies
I. B @IrinaBalduzzi
1 Followers 19 Following
Thesthee @ThestheefrQ8rE
5 Followers 268 Following
Dneti @DnetiszN
0 Followers 235 Following
Nancy Scagnelli @NancyS55312
3 Followers 29 Following
aspiring friend to lo.. @LarkBrains
295 Followers 712 Following feral cat. somehow survived to 33 so far. (he/him or they/them)
Kerrie Noone @knoone70
7 Followers 47 Following
🌸🖤C-19 Contact .. @soft_bb_bug
2K Followers 3K Following #blm #acab #FreePalestine #TransRights #COVIDisntOver(@soft_bb_boy)🏳️⚧️pan/nonmonog🏳️🌈disabled🖤wife guy 4 @scattergreat (she/they/whatever)
Pandemic A. Index @pan_accindex
5K Followers 3K Following A public archive of pandemic disinformation actors and biting commentary, supported by readers like you.
♡｡.✰ 𝑺𝒕�.. @compassion_ate_
491 Followers 885 Following Sick 19yrs ✨Respect the Nuance✨#MECFS #Fibromyalgia #CKD #TBI #AFIB #Neurodivergent #Homelessness ⚽️🏄🏻♂️ 🎬🗣️✍🏼🇬🇷🇺🇸✡️ ✌🏼&💚🚫RACISM🚫
carlos perez @Carlosfreedom10
67 Followers 2K Following
I ndah sarii @in_dah445
23 Followers 301 Following Mother, Skin specialist, golfer and enthusiastic about maternal health and neonatal health. Real reason I follow my opinion and respect your opinion.
American Girl @AmericanGi50108
14 Followers 262 Following
covidlongsolidarite @CLsolidaire
365 Followers 656 Following
tired robot (cdc hate.. @anonymousaaren
105 Followers 233 Following beep boop (they/he/em) nonbinary-tuxedo masc; official political position is for everyone to stop being a cop; too much theory; your rhetoric sucks
Tandy @MissTandy
323 Followers 2K Following Southerner by birth and 💜. I work for justice. Jaded wordsmith, mostly hopeful human. 🏳️🌈. Just cuz the ship’s sinking don't mean we can’t dance on deck.
0836288351 @ajwlvyiosr
0 Followers 333 Following
kait ✨ @ktsyks
665 Followers 1K Following front-end developer @torontolibrary • recovering from #LongCOVID • @junocollege alum • obsessed with my dog • popcorn + books are my vices • she/her
MetteXX @MetteXX23
34 Followers 127 Following MD. Art, science, nature, yoga and Mindfulness. I like people with ideals. And large cappuccino’s.
Cleo Gray 😷✨🍉 @Cleo_Gray
3K Followers 3K Following made in Korea. aged in Jersey. she/they POTS, H-EDS, Long Covid ‘22 Venmo: @Cleo-Gray
John Sargent @JohnSargent586
75 Followers 179 Following
Jan @Jan88090069
0 Followers 3K Following
Helena F @HelenaFalkenh
81 Followers 270 Following
Sam Aleman @Taxontaxontax
1 Followers 83 Following
Jungle Princess @PrimaDonnaGal
163 Followers 641 Following Full time Mum with m.e cfs Part time Artist, Ex Dj, wannabe Political activist/Comedian!Member of the Junglist Massive!
kess @kesskessl3r
199 Followers 347 Following
Laura @Laura52895003
1 Followers 114 Following
Megan Henshall @MsHenshall
412 Followers 873 Following
rachel @rachlke
48 Followers 383 Following books/writing/philly sports/drag race - bluesky/threads also rachlke
Syd @fcknsyd
2K Followers 1K Following 24 year old who’s life is currently on pause because of #LongCovid since April 2022 #POTS #Dysautonomia #MECFS #hEDS @CadAgainstLC
rose @_roseroserose
155 Followers 914 Following
Morgan Gregory #Speak.. @MGregoryAuthor
1K Followers 2K Following 30yr veteran Nurse, CDE, Speaker. #cEDS, Consultant. Writer for hire. Diabetes Educator. Author of 'Seventeen and Trying to Survive'. #Survivor. Hire me!
Rider @Rider02782242
27 Followers 91 Following
OhJason @OhSalcedo
1K Followers 1K Following Washed Former rank 1 Player Discord: OhJason Business Email: [email protected]
Neuro Sjo @neuropsychSjo
498 Followers 1K Following Research : ~ up to 55% of CIDP, POTS, SFN, MG, MECFS, NMO, long COVID & other neuro pts have Sjogrens Most clinicians : Sjogrens is just dry eye & dry mouth!
Flourish @orimokor29
203 Followers 1K Following lover of nature! Believer in Kindness! There's so much to benefit from nature !Enthusiastic about Neuro Biochemistry ....zero likes for controversies
Susannah H @firebug70
2K Followers 4K Following Mum. Carer for my son. Former English teacher. Researching #Lyme #ME #LongCovid #Pandas #Pans #believethepatient #believetheparent
Monica | Fatty, MPH s.. @fattyMPH
11K Followers 5K Following imagining size-inclusive care & public health policy / *not* giving individual health advice / she/her / pro-abortion / header by @llewellynillus
LongCovidPharmD @organichemusic
37K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS research. Here to share & learn. Tweets not medical advice. https://t.co/jqc4g8cFLa https://t.co/lKQezPwtQs
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
Prof. Akiko Iwasaki @VirusesImmunity
221K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII President of @ImmunologyAAI
It'sME(Jaime) @exceedhergrasp1
20K Followers 5K Following Director of Sci & Med Outreach, #MEAction Stanford Med TIME100 Health 2024 #ME, #EDS, #POTS, #LongCOVID Views my own [email protected]
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
Karen Lubell @karenlubell
3K Followers 2K Following ME/CFS is a connective tissue disorder caused/worsened by a virus. Ppl w/ ME/CFS & EDS often suffer from Craniocervical Instability & Occult Tethered Cord.
Dr Asad Khan FRCP FRA.. @doctorasadkhan
28K Followers 3K Following Lung Dr on pause since Nov 20 #LongCovid #POTS #MCAS #HSD #pwME #Aotearoa Views my own; Retweets≠endorsements #freepalestine #TeamClots ZIONISTS WILL BE BLOCKED
Daniel Brittain Dugge.. @dbdugger
15K Followers 6K Following HIV+ #LongCovid Advocate. Software Development. CJR Reform. SAND Scan.
Bea is Chronically Pe.. @Be_Kinderr
11K Followers 3K Following Chronic Illness Researcher. Science of #MECFS #LongCovid #POTS #EDS #MCAS CCI SFN Lyme etc & How They Connect🕵🏻♀️Scientist/Advocate [email protected]
Tess Falor, Ph.D. | @.. @tessfalor
9K Followers 5K Following 🚀Space physicist➡️#MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Janet Dafoe @JanetDafoe
15K Followers 220 Following Caregiver for very severe ME/CFS son, advocate and fundraiser for End ME/CFS PROJECT at OMF and CFSRC at Stanford. The rest of my life is on hold...
Jennifer Brea🦒 @jenbrea
41K Followers 2K Following Filmmaker @4mmfilm @unrestfilm @longroadhomedoc. @MEActNet co-founder. Dropped out Harvard Poli Sci/Stats Ph.D after virus. #MECFS, #longCOVID
Pam Bishop, PhD @pamelarbishop
10K Followers 3K Following Was research professor, now disabled by #LongCOVID (12/5/20) & subsequent #POTS #MECFS #MCAS #SFN #cSVD Patient advocate when able. Tell your story if you can.
T@Sunset @TeiaSunset
6K Followers 6K Following #LongCovid 2003/2020 / Cancer survivor. 🎵🎶Humming music, writing under trees watching sunsets.🏝️😻
Natalia @NataliaHodgins
7K Followers 1K Following Disabled writer with words in @Refinery29AU, @ABCNews, @PublicHerald | Activist | Feminist | MECFS | Follow on IG - same handle
Amy Proal, PhD @microbeminded2
29K Followers 5K Following Microbiologist at PolyBio Research Foundation: helping research teams collaborate on infection-associated chronic disease #me #longcovid #lyme #eds @polybioRF
Eliana Uku @ElianaUku
3K Followers 532 Following #LongCovid patient (mar '20) incoming @StanfordGSB | ex @37angelsny @paypal @inturnhq
Dfrizz @Dfrizz007
315 Followers 221 Following 42y/o dealing with #longcovid #MECFS since May 9th 2021. Fucking A
🌸🖤C-19 Contact .. @soft_bb_bug
2K Followers 3K Following #blm #acab #FreePalestine #TransRights #COVIDisntOver(@soft_bb_boy)🏳️⚧️pan/nonmonog🏳️🌈disabled🖤wife guy 4 @scattergreat (she/they/whatever)
Syd @fcknsyd
2K Followers 1K Following 24 year old who’s life is currently on pause because of #LongCovid since April 2022 #POTS #Dysautonomia #MECFS #hEDS @CadAgainstLC
layla 🇵🇸 @f0rgetmenot7777
104 Followers 88 Following very severe ME/CFS. POTS, MCAS, CCI, TCS, LYME, IIH. Fused C0-T2 ///- forgetmenot7777777 on insta.
Renegade Research @RenegadeRes
1K Followers 73 Following Community science, patient-led, philanthropically funded, decentralized research org. Open source, power to and from the patients. Runs @remissionbiome
Narcissist Facts 101 @narcissistfacts
29K Followers 345 Following Red flags of narcissism🚫Tips for healing🗒Support and validation for victims of narcissistic abuse💛All information from personal experience and the DSM-5📚
Ryan Daigler - Exposi.. @Ryan_Daigler
18K Followers 9K Following Scapegoat of a malignant narcissist foster fam /Survivor #NarcissisticAbuse/#ChildAbuse/attempted filicide-Raising Awareness #CPTSD #ActuallyAutistic Tell-All👇
derek guy @dieworkwear
862K Followers 963 Following Menswear writer. Editor at @putthison. Creator of @RLGoesHard. Bylines at The New York Times, The Washington Post, The Financial Times, Esquire, and Mr. Porter
Sibylle Dahrendorf �.. @sibylle_berlin
6K Followers 3K Following Once a filmmaker now stuck in horizontal hell | #SmallFiber #BigPain #POTS #MCAS #CCI #Lyme #FQToxicity #ME I Stop denial of #ComplexChronicIllnesses I
mark warling @markwarling3
1K Followers 2K Following ENFP/INFP BRAINTYPE, LOVE ART, SPORTS, HISTORY . BEING INSPIRED AND CREATIVE.
Isabel Ramirez-Burnet.. @IsabelRamirezRD
3K Followers 1K Following NBC-HWC CEO @renegaderes & Todologa @remissionbiome patient-led, decentralized, human-centered research. #MECFS #longcovid #IACI - views are my own!
T @Yrrepmot
344 Followers 1K Following Gardener 🌱weather fanatic ❄️ lefty+ ✊🏼 gay🔺MUFC mad 🇾🇪, ADHD, co-morbid 💀: ME, HIV+, hEDS, Fibro, complex mental health 🙃
Bohumil Rajchl @BohumilRajchl
1K Followers 474 Following 🎓 Certifikovaný Kouč pro citlivé lidi ◾️Pomáhám citlivým lidem ke spokojeným vztahům, zvládat rozchody a většímu seběvědomí.
Community Notes @CommunityNotes
939K Followers 0 Following Empowering users to create a better-informed world. We're open source and data is publicly available: https://t.co/Te3IjR10Ix Q? Reply/DM
Başar SARIKAYA @basarsarikayamd
3K Followers 1K Following Associate Professor of Neuroradiology, University of Washington, PGY-24, G93.32
GC @ThePOTSPostman
5K Followers 1K Following Just a mailman with #POTS. Here to spread awareness and advocate for those with #dysautonomia #chronicillness
Andy @AndyBayo_
357 Followers 2K Following Chronic Fatigue. Orthostatic Hypotension. Heat Intolerance. Impaired Cognition. Possible CCI. Possible brainstem compression. #mecfs #mespine #severeme
Adam J. Moore, MPH @AJMooreHealth
5K Followers 881 Following PhD-ing | public health, infectious diseases, & mosquitoes | own views & typos | he/him 👨🏻🔬🦟
unusual_whales @unusual_whales
1.7M Followers 2K Following Stocks/Options/Crypto/Market News +Tools. Not advice 🐳 who changed 🏛️. Get $50-$5000 to trade: https://t.co/wGf2ZdlXpw Discord: https://t.co/0xJ9e0ZYYG More: https://t.co/nsxZlPV0pC
4mm documentary film @4mmfilm
328 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).
JJ MacLean @JJMacLean
1K Followers 3K Following 🇨🇦 🏳️🌈 🌐👨💻 e/acc • building @sidedoor_vc • podcast @going_vc • ambassador @sandboxers
Larry Weis @LarryWeis7
408 Followers 1K Following #ME/CFS,#SFN,#Dysautonomia Owner-Commercial Insurance Agency
The Sick Times @thesicktimes
3K Followers 282 Following Non-profit news site chronicling the #LongCovid crisis. Founded by @betsyladyzhets and @mileswgriffis. Donate: https://t.co/YBFRSWzcJx
Andrew Kirvin-Quamme @kq_andrew
201 Followers 373 Following Eventual Harvard Health Data Science MS student, current pwME. Interested in using ML algorithms to improve care for mental health, ME/CFS, and Long COVID.
Open Medicine Foundat.. @OpenMedF
14K Followers 1K Following OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
Cortney Gensemer, PhD @CortDoesScience
7K Followers 937 Following Postdoctoral Fellow at MUSC | Driving Research Progress in the Ehlers-Danlos Syndromes | Passionate about Science Communication and Education
Brian Boyce (Buijs) �.. @TheBrianBoyce
2K Followers 5K Following CEO, MHA, Ethics & Integrity 😇Aeromedical Air Force Veteran🇺🇸Entrepreneur, Human Rights Activist, Educator, Crooner. 💙 Long Hauler vs. vax injury 👀truth.
Nick Chambers @NickChambers2
889 Followers 418 Following Using Twitter to improve my health. CFS since 2015. Worsened in 2021 after vaccine. Let’s do this 👏🏼💪🏼
Reshma Kapadia @reshmakapadia
5K Followers 4K Following Associate editor, Barron's magazine. Past: WSJ/SmartMoney Mag, Reuters. Vegetarian foodie Views are my own
Robert Rosencrans, Ph.. @rfrosencrans
6K Followers 3K Following MD/PhD Student Birmingham, Al. New Orleans born. autonomic control of metabolism. anti-fatphobia, anti-racism. I am a Long Covid caregiver. he/his. words mine
C.H. Romatowski @CHRomatowski
513 Followers 803 Following Recovering academic. Not so recovered sick person. ME ‘05, LC ‘23, many of their friends along the way. Very severe, thanks for your patience. Tweets delete.
Global Medical Collab.. @pwLCDoctors
552 Followers 5K Following Global Collaborative efforts to bring #LongCOVID, #mecfs doctors and related healthcare professionals to bring care & treatment ASAP. Part of @PuchoDigiHealth
Decentralised Patient.. @pwLCCareconnect
468 Followers 2K Following Global community to join forces with #pwlc, patient advocates & #longcovid advocacy organizations for care & treatment at warp speed. Part of @PuchoDigiHealth
Daniel Freeman (on hi.. @LongCovidKiwi
2K Followers 1K Following Used to be @GayKiwiDan. 44 y/o battling #LongCovid since 01 June 2022. Here to correspond with fellow sufferers. #MECFS #FBLC #MillionsMissing 🤒 😷
Neurologist Mom @NeurologistMom
5K Followers 267 Following A neurologist, M.D. a mother of a 15-year-old girl with severe neuroCOVID/ME/CFS who has been managing her daughter's treatment at home since October2022
Slapchop 🇵🇸 @SplendidSpeseia
648 Followers 762 Following Chronic illness biohacker/self-experimenter. Psychonaught when able. Disabled by ME/CFS. Daoist, Marxist, Trans, She/They. Embrace the Void 🤩😵💫🤩
Becky @Beckysolar
71 Followers 144 Following Slowly dying from untreated severe craniocervical instability, v damaged and CSF leak. Discriminated against for having Ehler's Danlos by UK health system.
Winnie 🇨🇦 🦘�.. @CockapooWinnie
283 Followers 745 Following Proud mom of 2 amazing kids, wife and engineer! Lover of ⛷️🥾 🌳 🌸 📚 🎶 🌊 🧳 👯♂️ On a mission to spread kindness to everyone everyday! Long COVID ❤️ ✌️
☆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 :(
Elise Racine, MSc, MP.. @Elise_Racine
485 Followers 1K Following Health/tech advocate #AI #COVID #ethics 🏳️🌈 PhD candidate @Oxford_NDPH @EthicsInAI @Ethox_Centre 🇬🇧 MPA @thehertieschool 🇩🇪 MSc @LSE_ID 🇺🇸 BA @Stanford
sarah zurat @sarahzurat
230 Followers 2K Following Lover of mountains, soccer, running, writing. Information specialist at Fred Hutch.
Eliza Charley | Actre.. @ElizaCharley
6K Followers 2K Following 🎥 ✨Australian Actress in Italy. Care about #mecfs #longcovid #climate #dv #auspol 🎭co-founder Mi Casa Theatre 📚Words in SoulTread & RoutledgePress She/her
bitch lasagna (she/he.. @saraalikescats
240 Followers 485 Following Environmental Science. 🍄 Slipping Rib Syndrome advocate. ☠️ Chronically ill Covid avoider.
Martin Tomlinson @martintomlinson
3K Followers 4K Following Actor, Owner of @DeadRoomStudio Represented by @AgencyAPM https://t.co/p7qLU1VNwc
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Bateman Horne Center @BatemanHorne
6K Followers 1K Following Bateman Horne Center is a non-profit medical, research, and education center devoted to eradicating ME/CFS, FM, Long COVID, and related conditions.
Don't forget to pack your loaves.
@Dfrizz007 I Have a partially empty sella. And the cushings type swelling on my clavicles.
Just wanted to share this for any #craniocervicalinstability #atlantoaxialinstability people, because it was difficult to find references for myself; this is my imaging, which warranted the recommendation of at minimum a skull to c2 fusion and more likely a skull to T1 fusion (1)
@fcknsyd Because ppl are obsessed with their toxic positivity, sunshine & rainbows. It’s all an illusion but Anything that threatens that is removed.
Reddit kills me 😂 #LongCovid #MECFS
@MaritSkotheim As far as I know, it's the first time anyone with ME has been named to TIME's 100 of any stripe. At least, the first time it was someone who is public/open about their illness.
As far as I know – this is the first time in history a person suffering from the neuroimmunological disease #MyalgicEncephalomyelitis (#ME) is on the TIME’s list 👏🏻💙✊🏻
TIME's list of the 100 Most Influential People in global health is out today. I'm honored to be a part this group: time.com/time100health @TIME #TIME100Health
best-dressed at the wedding
!!! Might this explain why Mast Cell Activation Syndrome occurs with Craniocervical Instability/Ventral Brainstem Compression? #mespine
This is big. Scientists have identified the cells in the brainstem that sense immune cues from the body and act as "master regulators" of the body’s inflammatory response. "The discovery is akin to a black-swan event. It's a whole layer of biology we haven’t even anticipated”
TIME's list of the 100 Most Influential People in global health is out today. I'm honored to be a part this group: time.com/time100health @TIME #TIME100Health
Deeply honored to have been named one of @TIME's TIME100 Health honorees for my work with #MEAction in infection-associated chronic illnesses like #MECFS and #LongCOVID. Thanks, as ever, to the remarkable Jamie Ducharme, who wrote this wonderful piece. time.com/6967257/jaime-…
One thought that really bothers me is that there are millions of kids out there suffering from Long Covid, and no one knows because it’s being swept under the rug to make adults feel like it’s 2019 again. Imagine how many little kids are suffering from extreme fatigue, brain fog…
Taking all my medications and supplements, drinking enough fluids and electrolytes, resting an adequate amount, and feeding my microbiome are a fucking full-time job. 😵💫
Everyone just wants to hear “good” news. They don’t want to hear the hellish reality we face. They can’t accept it. And when I’m seen as not having a positive approach, I am told I don’t want to get better
Approaching three weeks post-PICL. I’m doing somewhat better although it’s too early to evaluate results. But I can feel the new ligament tissue in my neck. It’s a bit stiff so I keep trying to gently stretch it out. Strange feeling.
I’ve improved more than I thought was possible four months ago. Normal life looks attainable from here. But I’m barely allowing myself any positive emotion because the danger of backsliding is so serious and will be lifelong. #MECFS
i don't get people privileged enough to own a comfortable house still complaining about having to eat in it for 2 months in 2020
Do not listen to anyone who tells you that your abuser can “improve” or “get better” if you just stick around and “support them”. Some of those people might think that they mean well, but that advice is outdated and toxic. It’s not your job to try and rehabilitate abusers.
Being abandoned or forgotten by friends and family is a common experience in severe / long-term chronic illness. If you improved enough to socialize again, would you want to be in touch with the people who have fallen out of your life again? #mecfs #longcovid
this is super embarrassing how about instead of fucking around in med school and incorrectly diagnosing yourself learn how to actually diagnose hEDS, CCI/AAI, and OTC so we can stop having to diagnose ourselves, research, plan, and advocate for our own neurosurgeries.
What did you "diagnose" yourself with during med school? #MedTwitter #medstudenttwitter Was chatting with colleagues about this yesterday For me: -Cushing's syndrome - 2nd year -Acute pancreatitis - 4th year -Ovarian cancer - 5th year 🤦♀️😂
I don’t care what anyone says, “I feel fine but my wife made me come in” has a positive predictive value for something being really fucking wrong that approaches 100%
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