Dusankoa @dusankoa
#pwME East, England Joined May 2020-
Tweets2K
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Followers366
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Following380
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Likes7K
My Throat Collapsed more I’m not going to make it if I don’t have immediate Surgery. Thanks for being such good friends. I wish we all could have got better and visited each other around the World. You all are so special, keep fighting if I don’t make it. Fight for people like me
Big fuck you to B. Tomlow, pulmonologist at Isala hospital Zwolle, for refusing to give me, a very severely ill #LongCovid patient, a V/Q scan. And for making me cry and recommending physical therapy during the appointment that took every last bit of my strength to get to.
No doctor seems to understand that I am physically incapable of entering some physical/cognitive rehabilitation program. That’s where the help ends. #LongCovid
New from the US: "Serum from #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome patients causes loss of coherence in cellular circadian rhythms" Abstract: sciencedirect.com/science/articl… #MEcfs #CFS #MyalgicE #PwME 1/
Dear friends and family, For almost 5 years my husband Philipp and my brother-in-law @cstroeckw have been suffering from this terrible disease called ME/CFS and there is no improvement in sight. It makes me sad how much this disease has taken from us... This helplessness sucks.
I know of a person who was bedridden for 4 years from ME/CFS & was fortunate enough to receive Ampligen. They recovered to a near full remission & was able to resume normal life while on the drug (working, lifting weights, traveling etc). It came to a point where they couldn’t…
Long Covid sufferers feel forgotten three years on bbc.in/43ULvCw
Covid deaths in the first week of June in the UK up to 230. I never heard of 230 people dying in June from the common cold. Or from the flu for that matter. Frightening how such death and suffering has been so casually absorbed into the cost of doing business
Nobody likes a sick person. We look sickly, move slowly & don't smile. We make people uncomfortable; bring up stuff they don't want to remember or consider. It takes an exceptional person to stay 'with' a chronically sick person & not scuttle off to a more comfortable place.
Hey @BBCMorningLive - I’d love to come onto the programme and talk about Long Covid if you’ll have me? There is tons of research and plenty of treatments. I’ll be covering them on my YouTube channel with @Helen_Oakleigh (see my LinkTree in bio). Just give me a shout!
Hey @BBCMorningLive - I’d love to come onto the programme and talk about Long Covid if you’ll have me? There is tons of research and plenty of treatments. I’ll be covering them on my YouTube channel with @Helen_Oakleigh (see my LinkTree in bio). Just give me a shout!
@Dr2NisreenAlwan @xandvt These ‘experts’ that are claiming diet,exercise,good sleep hygeine, stress reduction & lifestyle changes can cure or significantly improve LC & ME/CFS are truly ignorant & absolutely do not understand the core immune dysfunction that drives the illness
@Dr2NisreenAlwan @xandvt I seriously give up. You saw dozens and dozens of patients attaching clear evidence that Long Covid has destroyed their bodies, ME patients saying they’ve been tortured for DECADES and you still defend this minimizing piece and say we don’t need pharmacological treatments. Lol.
@thielen_l If Ron Davis went on TV and said ME could be treated by getting more sleep or changing your diet he would be rightfully criticised too. We are in summer 2023. A serious ally who understands LC would not seriously discuss lifestyle changes as a treatment.
It seems that prof Michael Sharpe unblocked me to thank me for the publicity for their conference about whatever and then blocked me again. They clearly need the publicity! 😂🤣
I feel like I’m being treated like worthless garbage. I’m in inhumane pain and I get no help from doctors. On top of it my pain is regularly denied and psychologized. I’m told *I’m* the problem. Is this fucking 1825? #LongCovid
Sexually transmitted infections have risen to astounding levels in many countries in recent years, undoing decades of progress. Public health failures and mass covid infection have weakened our defences against STIs🧵
In case you think #LongCovid only affects those with underlying health issues, overweight or elderly… think again. The world was literally at my feet and now everything feels like Mount Everest. Showering- hard. Climbing stairs- hard. My story isn’t unique
Thank you, for your continued investment to combat (post-) viral diseases, @VitalikButerin! Depending on who you ask and which criteria you use, between 20-50% of #LongCovid patients fulfill criteria for #MECFS. Is your group open for grant applications for this subtype? TY!
Thank you, for your continued investment to combat (post-) viral diseases, @VitalikButerin! Depending on who you ask and which criteria you use, between 20-50% of #LongCovid patients fulfill criteria for #MECFS. Is your group open for grant applications for this subtype? TY!
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨
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
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
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
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
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.
Tracey Burgess @TraceyABurgess
2K Followers 3K Following Mum to a trans daughter 🏳️⚧️ who loves the natural world.🌿Degrees in Hist/Phil & Counselling/Psychotherapy. Unwell since 2007, worse 2016/17. Improved.🌼
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
Paula Knight @Paula_JKnight
5K Followers 4K Following Graphic memoir THE FACTS OF LIFE (2017) Kidlit books x3 author. Disabled. Bedbound 5.5yr v severe #pwME Submerging writer. Total Bedass. Print Disabled she/her
Illustrator Interrupt.. @FranceyME
3K Followers 2K Following Illustration career interrupted by #ChronicIllness advocating for #MyalgicEncephalomyelitis #LongCovid #GWI #POTS #EDS @franceyme.bsky.social
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.
Lisa Zett @ME_LisaZett
2K Followers 1K Following #MECFS #Lyme #Democracy #🌈Ally PhD Political Science. I do care. she/her @[email protected]
Cyrus | Mastodon in b.. @CyruxiME
2K Followers 602 Following Energetically compromised by severe #MECFS. All systems operating at minimum capacity & overloaded. he/him. On the Fediverse: @[email protected]
@heyjanae.bsky.social @HeyJanae1
2K Followers 2K Following she/her | #blacklivesmatter | ♒️ | copywriter & social media manager | #boycottEurovision | Anime & Cartoons| 日本語OK
Anna Wood @Annakwood
3K Followers 2K Following STEM Ed researcher @UniEdinburgh (part-time). Physicist, digital education, bird photographer, #mecfs Author of 25 Birds: https://t.co/DcN0WiZVAy
All of them snollygos.. @OnlyEnnui
3K Followers 2K Following @onlyennui.bsky.social Ex philosopher. #MEcfs activist #hEDS. spinal injury, prescribed benzo withdrawal = hell Expect swearing & sarcasm
Grieving ME Caregiver.. @mecaregiver
1K Followers 1K Following Caregiver of patient with severe Myalgic Encephalomyelitis & one son died of very severe ME. Hope for BC007 IMPORTANT INFO: ME IC PRIMER: https://t.co/tnfTPKyIGj
Harper_Jones @HarperJone72333
24 Followers 2K Following
Nina A Tomei, MD @doctormom63
4K Followers 2K Following Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
Pop Schief @PopSchief
0 Followers 218 Following
Nancie Ashland @AshlanNanc
58 Followers 5K Following
Silver & Gold / Crypt.. @CryptoNGold
871 Followers 1K Following Energetic; Optimistic; Joyful; Jesus Christ is Lord! Love a good joke; Enjoying life! #Silver #Gold 👉 https://t.co/fXqS6uahrs
bethereificould @bethereificould
604 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
MAVIS WANCZYK @mavis_wanczyk98
10 Followers 338 Following
Holidayworks Africa T.. @Holidayworks123
493 Followers 5K Following Holidayworks Africa Tours & Safaris, dully registered Kenya Company!! objective,show the world Africa’s amazing diverse landscape, wildlife, history & heritage.
Rev. Maria Pierre @losdocepasos
1K Followers 5K Following ME (Chronic Fatigue Syndrome) Warrior, Interfaith Minister-Retired, A Course in Miracles Teacher, Encourager, Advocate. TCM lover
Emma 🦋 @Emma40025133
2K Followers 986 Following Chronically ill with MCAS, POTS & ME/CFS. All brought on by covid infection in January 2021.
Flor 🥀 @lugaresxcomunes
1K Followers 1K Following we need funding for research and treatments for Myalgic Encephalomyelitis and Long Covid NOW | #pwME
RTHM @RTHM_Health
4K Followers 3K Following RTHM connects you with a digital care team specializing in Long COVID and ME/CFS that provides access to a range of therapies based on the latest research.
Mark @longcovidman
3K Followers 5K Following On pause: management consultant, tech founder & powerlifter. Follow for smart answers to long cov*d as I find them
Matt Lazell-Fairman @mfairma
961 Followers 1K Following ME patient. Spouse with LC & ME. Fund marginalized diseases. Plow under suburbia. Build walkable, accessible towns and cities.
Klaus H. @DownloadArtAI
774 Followers 3K Following #MECFS, #POTS, chron. pain +PostC. Bell10. INFP. IQ151. Former highperformer now 24/7 bedridden in darkness and silence. Lang: DE-EN-NL #verysevereME #pwME
Allison @allison_r_s
267 Followers 934 Following
V.ATHINARAYANAN INDIA.. @AthiAthy2
179 Followers 3K Following அன்னை பகவதி நமோ நமஹா சனாதன தர்மம் வெல்லும் 🚩🙏🙏🙏🇮🇳🙌
E𝚕𝚢𝚜𝚎 K�.. @elysekiera
1K Followers 225 Following S𝚎𝚟𝚎𝚛𝚎 𝙻𝚢𝚖𝚎 & 𝙼.𝙴., 𝚋𝚎𝚍𝚛𝚒𝚍𝚍𝚎𝚗 & 𝚑𝚘𝚞𝚜𝚎𝚋𝚘𝚞𝚗𝚍 𝚏𝚘𝚛 𝚘𝚟𝚎𝚛 𝚊 𝚍𝚎𝚌𝚊𝚍𝚎. A𝓇𝓉𝒾𝓈𝓉 ❀
Melina @melinalinalina
323 Followers 507 Following Just a sick girl | this is an alt acct for low spoon vents #LongCovid #MECFS #FBLC
It's M.E. Kathryn @JoyK8
569 Followers 2K Following Medically retired RN, #pwME since 2001. #POTS, #EDS, #MCAS, #DDD https://t.co/nLYrg2JBod
Kōbe652 @Kobe652
644 Followers 4K Following Born in #Lyon, #France. Postgrad #MIT. Lived in #Kobe, #Japan. #pwME, #MECFS since 2009, #PEM, #HSP, Also: -at-kobe652-at-mastodon-dot-online
nraffz @nraffz
164 Followers 3K Following
Anna Radcliffe 💙�.. @AnnaRadcliffe74
438 Followers 1K Following Missing from life since 2019 #mecfs. Still mum to my beautiful boy. Still happiest with hands in the dirt. Waiting for science to catch up. #mecfs #pwme
ME/CFS-L @cfs_lb
464 Followers 137 Following ME/CFS for 18 years and counting - experiments with novel therapeutics for ME/CFS - Former Artist
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]
N Rog @Nc_Rog
1K Followers 2K Following Once highly active. Now mostly housebound due to Long Covid and resulting ME/CFS and POTS. First waver March 2020. Yes BEFORE the vaccine.
Ambrus Bela @belambrus
512 Followers 2K Following Am inceput cu aceasta pasiune pe Redbubble de placere ca ilustrator artistic independent. Nu am crezut ca voi reusi sa ajung pana aici.
Inyabugingo @CityRwanda82201
89 Followers 858 Following
Kirst @kirstler31
2K Followers 937 Following Severe #MECFS 🛌 #LongCovid - March 2020 #PostVac #POTS Part of the #Renegade50 💫 @RemissionBiome
Josh @ProperChels34
2K Followers 392 Following #LongCovid+ ME/CFS since Feb 2021. #POTS #AdrenalInsufficiency
JJ @M02181653M
2K Followers 5K Following #TreatLongCovid #LongCovid #Notrecovered #MECFS #MillionsMissing #PwME #BC007
Brooke Keaton @SonoraSmile
793 Followers 1K Following Wife and mom to 2 beautiful daughters! Former teacher, now Covid Long Hauler and Long Haul Advocate 🩵. Fighting AxSpA, IST, PMDD, MDD, GAD $BrookeKeaton
Ray Terrence @RayTerrence1
16 Followers 154 Following
Keka Ju @Rebe73539251
1K Followers 4K Following PACIENTE de #CovidPersistente #EncefalomielitisMialgica y #DisautonomiaAutoinmune LUCHANDO POR NUESTROS DERECHOS, VISIBILIZACIÓN Y POR #SanidadPublica
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.
Long & Tired Road #FB.. @LongTiredRoad
824 Followers 488 Following Trying to find a way out of the LC haze, hopefully with a little help #FBLC
witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. Volcanologist at heart. M.E, fibromyalgia, chronic migraine. Trapped in an unsuitable home @sickness.bsky.social
Julia @julia_with_me
3K Followers 2K Following Zwischen Aufklärung und Alltag über #MECFS, #PostVac, #CRPS, #POTS & co.
Debbie Seymour @debbie_seymour
2K Followers 779 Following This account can no longer be managed at this time due to Debbie's deteriorating condition. She is okay, but not improving. #LongCovid #MECFS #POTS
Kenny Loggs Off @interestingdan
672 Followers 3K Following Brain in jar thanks to ME/CFS https://t.co/j5mjZIhu7H
Claire @claireheatherd1
94 Followers 657 Following Holy Spirit filled Christian who's not ashamed to say it. In full faith for deliverance & healing from severe ME. Nothing is impossible with God. In Jesus Name
Tapanui 'Flu @TapanuiFlu
2K Followers 3K Following Kiwi Nana. Ex social scientist. #MyalgicEncephalomyelitis since 1983 #TapanuiFlu epidemic Hamilton #NZ outbreak. Mostly housebound. On welfare. #LongCovid ally.
Amy @alexandrite113
6K Followers 844 Following Long Covid to very severe ME/CFS to mod/severe ME/CFS. Tweeting into the void. DX'd autistic ✨
Bhupesh K Prusty @BhupeshPrusty
15K Followers 68 Following A passionate molecular virologist who believe in patient oriented scientific research. Using viruses to understand human existence. Science is for society.
Lizzy H @hopefullizzy
6K Followers 3K Following 29y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨
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
Crafty Miss @CraftyMissB
5K Followers 3K Following I'm Beth, embroidery & craft are my buzz. #socialist #pwme #disabled insta: thecraftymissb https://t.co/H4UqOa9igd
Dan Wyke 🦠➡️�.. @Dan_Wyke
13K Followers 6K Following M.E. patient, advocate, person-centred counsellor (see link), recovering poet
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.
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
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...
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
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
Dr Claire Taylor @drclairetaylor
66K Followers 2K Following Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴Views my own
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
Martin Hippe @pausedME
7K Followers 474 Following East Westphalia by Nature ⎮Lawyer by Profession | #Musikrecht | #MECFS | @Mirame_Arts | No medical advice!
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.
Sten Helmfrid 🇺�.. @StenHelmfrid
7K Followers 205 Following Ph.D. in physics, also interested in mathematics and science theory. Loves to apply general knowledge of science to other fields, for example ME/CFS.
Anil van der Zee © @AnilvanderZee
9K Followers 823 Following Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using Twitter to raise awareness for #MyalgicE | #art2cureME #pwme #millionsmissing
Christoph Ströck @cstroeckw
7K Followers 455 Following Soon, people will look back in disbelief at what has happened to patients with #MECFS and #PAIS | @weandmecfs co-founder
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
Harry Boby @HarryBoby4
3K Followers 60 Following I care about Philosophy, Health, and ending Long Covid & ME/CFS. Recovery videos & more⬇️
Emma 🦋 @Emma40025133
2K Followers 986 Following Chronically ill with MCAS, POTS & ME/CFS. All brought on by covid infection in January 2021.
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.
Mark @longcovidman
3K Followers 5K Following On pause: management consultant, tech founder & powerlifter. Follow for smart answers to long cov*d as I find them
Nate Bear @NateB_Panic
28K Followers 1K Following Disease, covid, ecology, empire, other stuff. I write about these things at the link below. Email me tips: [email protected]
Katherine Alice @thisislongcovid
853 Followers 100 Following From Long Haul ✈️ to Long Hauler. #LongCovid since Oct 2020. 20 something female navigating the debilitating effects and raising awareness
WE&ME Foundation @weandmecfs
3K Followers 50 Following WE&ME Foundation funds and supports collaborative research projects to combat #MECFS and related disorders.
bri @briimii
2K Followers 3K Following former indie music lover and sunny weather seeker. #LongCovid #NotRecovered #CovidTinnitus
Anna Wood @Annakwood
3K Followers 2K Following STEM Ed researcher @UniEdinburgh (part-time). Physicist, digital education, bird photographer, #mecfs Author of 25 Birds: https://t.co/DcN0WiZVAy
Sassy @NekomataSassy
704 Followers 368 Following #Postcovid / #Mecfs / #PostVac🦠 #MCAS💙fighting united💙 23hr bedridden after 1x #COVID19 infection ☆since June 2022☆
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
Paulie @paulie_paulie
526 Followers 1K Following Generally horizontal. Very Long Hauler. ME/CFS since 2011 (Moderate) #Gardening #Allotment #GrowYourOwn
Finn, PhD @Finn000000000
651 Followers 243 Following PhD ❤️ Regeneration, immunology 👨🏻🔬 Ex 🚴♂️ 🧗🏻♂️ 🏃🏻♂️ Vax-injured/ME 🧪 🧫 🧬 pronouns: not/retarded
Andrew Boland @Avose243
115 Followers 90 Following Theoretical Physics/Mech. Eng/Software Engineer #LongCovid #DeSci
FloridaGrl @floridagrl1982
548 Followers 643 Following Attorney, long-distance runner, & dog mom in my previous life. #LongCovid since July 2020.
Mary M Schweitzer �.. @DocMary75
811 Followers 330 Following American historian; disabled with Myalgic Encephalomyelitis (ME) since 1994; TCM junkie.
Celine @healingfromlc
9K Followers 3K Following COVID in December 12022 HE | Bedridden with severe #LongCovid | Data scientist | Dutch
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.
Jason I @jason_isaia
831 Followers 1K Following Moderate,Severe Housebound/Bedbound ME/CFS since 2022 💙AFL & EPL
Phi @phi_psd
5K Followers 931 Following Australian/Greek/Cypriot nerdy visual designer, living in Berlin. 🇨🇾🇬🇷🇩🇪 end #prescribedharm #longcovid & #mecfs @berlinbuyers
Kōbe652 @Kobe652
644 Followers 4K Following Born in #Lyon, #France. Postgrad #MIT. Lived in #Kobe, #Japan. #pwME, #MECFS since 2009, #PEM, #HSP, Also: -at-kobe652-at-mastodon-dot-online
markmooch @MarkMooch
1K Followers 1K Following Elder Millennial & Social Justice Warrior. ME Patient. Drummer. Northerner. Pontificate a lot. Cannot read research papers due to fatigue. Dry Humour. 🌱
Olena ‘Olenka’ Sa.. @coco_chatel
3K Followers 1K Following Ukrainian-American. Theater nerd/former arts administrator. Left-ish Libertarian-ish. Life on pause due to #LongCOVID. Wife to @max_e_rodriguez
Craig @4runnerbro
2K Followers 167 Following Long Covid, POTS, MCAS, ME/CFS, UC Berkeley Alumni, TechBro
clair elle ❀🦌 @ClairElle__44
3K Followers 90 Following former IT analyst and occasional film photographer. chronically Ill for the social mystique (ME, hEDS & POTS)
Beni @Benshi_11
409 Followers 276 Following
Nwiss 🇸🇪🇪�.. @Gronnet
4K Followers 2K Following Health & Medical Science (views my own) News and Research on #LongCovid #FBLC #MEspine #EDS Longhauler since March 2020, (3x Covid inf) #MECFS since 2011
Phileas Brain Fogg @FoggBrain
1K Followers 1K Following Living with Long COVID/ME since Spring 2020. A new account to protect my privacy. Connecting dots, sharing love & keeping my🤞for a medical miracle #FBLC
Josh @ProperChels34
2K Followers 392 Following #LongCovid+ ME/CFS since Feb 2021. #POTS #AdrenalInsufficiency
Brooke Keaton @SonoraSmile
793 Followers 1K Following Wife and mom to 2 beautiful daughters! Former teacher, now Covid Long Hauler and Long Haul Advocate 🩵. Fighting AxSpA, IST, PMDD, MDD, GAD $BrookeKeaton
Hrefna @hrefnask
1K Followers 868 Following #Mecfs & #Pots since 2012. Currently moderate/severe and mostly housebound. 🏳️🌈 She/her From the river to the sea, Palestine will be free 🇪🇭
Mark Wright @markeology
12K Followers 3K Following Professor, archaeologist, PhD, and recreational micropoet. #SCBWI. Budding YouTuber. Impatient #MECFS patient.
Alice @Alice_mecfs
1K Followers 686 Following #MECFS for almost a decade now. Hoping to connect with others & find a way out.
Ramy @ramyvaldes
2K Followers 615 Following Attorney, part time poet, musician. Life on pause due to mecfs.
Nick Wellings @Nick_Wellings
3K Followers 5K Following used to love opera + ballet, some books. now disabled by ME
Richy @really_richy
511 Followers 533 Following 💊 Living with ME/CFS. 🛌 Tweeting from bed. 🦘 Brisbane, Australia. 💖 Inspired by great people making a great impact. #pwME, #MECFS. #pwLC, #LONGCOVID, #PASC.
Olly @ollybishop
1K Followers 2K Following Film geek 🎞️ Doctor Who nerd❓ Retro gamer 🕹 Punk 🤟🏻 @lfc ⚽️ @england ⚽️ @atlantafalcons 🏈 @braves ⚾️
witness the sick Ness @UrgleyClark
1K Followers 2K Following she/ her. MIA Secondary SEND teacher. Volcanologist at heart. M.E, fibromyalgia, chronic migraine. Trapped in an unsuitable home @sickness.bsky.social
Long & Tired Road #FB.. @LongTiredRoad
824 Followers 488 Following Trying to find a way out of the LC haze, hopefully with a little help #FBLC
out cast @hellwithpots
276 Followers 103 Following life over when it was just getting good. me/cfs dysautonomia mcas
Karen Boyett @krboyett
493 Followers 1K Following Former Anthropology Professor and Non-profit Professional struggling to live due to 17+ years of #MyalgicEncephalomyelitis #MEcfs #pwME #severeME #LongME
Kenny Loggs Off @interestingdan
672 Followers 3K Following Brain in jar thanks to ME/CFS https://t.co/j5mjZIhu7H
Lisa_Cat @AertbyLisa
739 Followers 838 Following Artist and Designer - Sometimes a mess, mostly a work of art. #MEcfs #MEawarenesshour
CFS Remission @CFSRemission
132 Followers 1 Following Microbiome researcher apply typical Operation Research magic to the nasty statistical behavior of bacteria. "It's ain't normal (distribution). "
@MeetJess Yeah, they say it could take 2 to 3 years to reach market. Also, of course, it won't fix any potentially permanent damage cause by the virus. I'm glad they are rushing this while people rot away.
At the top of 'Big Daddy' dune a few weeks back 🇳🇦 A couple of years ago, I wouldn't have thought this was possible. Please don’t give up hope, keep at it. ❤️
@SurpriseSparrow Agreed. All this pearl-clutching over potential kidney issues. I'd rather take my chances with Pax than die now or later from Covid.
If you have #LongCovid or even #MECFS does your vision vary day to day???? Like not necessarily sensitivity but literal blurred vision one day and perf fine the next? Like sleepy eyes but all the time??
Big fuck you to B. Tomlow, pulmonologist at Isala hospital Zwolle, for refusing to give me, a very severely ill #LongCovid patient, a V/Q scan. And for making me cry and recommending physical therapy during the appointment that took every last bit of my strength to get to.
In desperation I just took a progestin pill (desogestrel) that I had from a while ago, hopefully to induce my period or at least attenuate the crash? I just feel so powerless, I just want to get better
My period is two weeks late so perhaps it’s coming soon and this is a pre-period crash? The first day of my period is usually such a high, I’ve just been waiting and waiting
I’ve been in a crash for almost a week now and I don’t understand why, I am doing everything right, I am spending only minutes on my phone and the rest of the time I lie in the dark for hours on end without moving
They’re all happy to help each other f*ck over the sickest
No doctor seems to understand that I am physically incapable of entering some physical/cognitive rehabilitation program. That’s where the help ends. #LongCovid
First Blueberries of the year.
@StanWillenbring Your neighbors sound entitled and nosy. They have no right to demand anything of you, not your time or attention or anything at all.
I'm a loner. I enjoy being by myself. People find that suspicious. My neighbors intensely dislike me and they're angry because I won't spend more time with them. Does That Make Any Sense Whatsoever?
Perhaps this needs repeating. SARS-CoV-2 killed my healthy 40 yr old nephew. It f*cked up me, my wife & our teenage son with brutal, ongoing, serious health problems. I am not, I repeat I AM NOT risking another damn infection. I can't. And I'm living my life just fine thank you.
"Fades into a background threat." 37,000 people in the US have died of covid in the last 5 months
Emboldened by the government’s recent lifting of the public health emergency, Americans who have tried to be rule-following pandemic citizens for the past three summers are at last abandoning precautions as the coronavirus fades into a background threat. wapo.st/3r03YyQ
Crash sucks today… been comatose most of the day after sleeping all night, low HR and BP 95/54. If you tagged me in conversations, apologies, my brain is broken rn. If anyone would like to send pictures of trees/ outdoors/ walks they’ve been on I’d appreciate it!
New from the US: "Serum from #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome patients causes loss of coherence in cellular circadian rhythms" Abstract: sciencedirect.com/science/articl… #MEcfs #CFS #MyalgicE #PwME 1/
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