Existential Bread @exist_bread
Mostly stuff about chronic illness, data, and Oxford commas. Joined July 2015-
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I spoke earlier today with The Guardian's George Monbiot about his recent scathing column on a "national scandal"--the longstanding mistreatment of those with the illness (or cluster of illnesses) currently known as ME/CFS. Thanks @GeorgeMonbiot! virology.ws/2024/04/18/tri…
#SevereME trending in News with 1,318 posts Doesn’t say how many posts we have for #SaveCarlasLife and #ExposeMENow But please share and tweet for this online protest 🪧 if you can 🙏🏻 this is the only way our voices can be made loud to get attention for this urgent matter.
“If I had a disease that was totally disabling, I would be much more angry & aggressive than most of the patients I know.” ~Dr. Dan Peterson in 1994 about ME/CFS patients (from Osler’s Web)
Great article breaking down how NYT, Vox, and others tie themselves into pretzels trying to come up with every possible explanation for chronic absences from school during a pandemic EXCEPT actual illnesses and their long term damage.
Great article breaking down how NYT, Vox, and others tie themselves into pretzels trying to come up with every possible explanation for chronic absences from school during a pandemic EXCEPT actual illnesses and their long term damage.
A reminder that if you live within 50 miles of NYC and you have a PRE-2020 #MECFS diagnosis, then @VirusesImmunity and I NEED your help! If you have difficulty traveling we will come to you. Please help us to hit our recruitment goals if you can! 🙏🙏
And you have 800k fewer Americans to take care of, thanks to your atrocious handling of COVID. I'd send you a Mission Accomplished banner, but all my money is going toward the uncovered costs of chronic illness in America.
And you have 800k fewer Americans to take care of, thanks to your atrocious handling of COVID. I'd send you a Mission Accomplished banner, but all my money is going toward the uncovered costs of chronic illness in America.
I have been so spoiled by virtual care… I had an in-person appointment at 10 AM today. It took me about 45 mins to eat breakfast and get ready. Then the drive plus getting in the building and finding the clinic took 1 hour and 15 minutes. The waiting plus the actual appointment…
Not just for known Long Covid cases - but for all the people who suddenly get sick 5-6 times a year instead of 1-2 times. For all the people with strange new onset serious health problems after a lifetime of good health. Covid does damage - immune, heart, etc. We need research.
Not just for known Long Covid cases - but for all the people who suddenly get sick 5-6 times a year instead of 1-2 times. For all the people with strange new onset serious health problems after a lifetime of good health. Covid does damage - immune, heart, etc. We need research.
Says the man who claims psychosomatic illness is not ‘stigmatizing in the mind of anyone except the patients’. You tell us it’s psychosomatic, you tell us the mindset of those around us, and cherry on top you tell us our own mindset. We push back and you cry abuse.
Says the man who claims psychosomatic illness is not ‘stigmatizing in the mind of anyone except the patients’. You tell us it’s psychosomatic, you tell us the mindset of those around us, and cherry on top you tell us our own mindset. We push back and you cry abuse.
Every time I figure out some work I can basically do from my bed and somehow think it’ll be okay. And every time I crash within 24-48 hours of mild paced cognitive effort. This isn’t a life. It’s barely an existence.
Most medical school classes on bedside manner: “Patients are unreliable historians. Never believe them, but you can still use your brilliance and superiority to correctly treat them despite their incorrect complaints. Next week we’ll discuss why rare conditions don’t exist.”
This is the former US SURGEON GENERAL. What does this say about US healthcare if he gets a $5k ER bill AFTER insurance. Our system is cruel and unusual and should be struck down for being unconstitutional. America has many great things. Our healthcare system is not one of them.
This is the former US SURGEON GENERAL. What does this say about US healthcare if he gets a $5k ER bill AFTER insurance. Our system is cruel and unusual and should be struck down for being unconstitutional. America has many great things. Our healthcare system is not one of them.
And this is the simplified UK version of getting medical care. In the US, she'd have to add whole sections on prior authorization, in-network care, annual deductible, co-pay…
And this is the simplified UK version of getting medical care. In the US, she'd have to add whole sections on prior authorization, in-network care, annual deductible, co-pay…
Mariya Shain @MariyaShai32649
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Rach @ra800800
49 Followers 212 Following
Litsa Dremousis 🐳 @LitsaDremousis
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Bianka Rivera @bian_rive
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Cass OFee 🌈🇱�.. @MamaCassOFee
292 Followers 1K Following Writer, Pagan Priestess & Voracious Learner. Lost 400lbs & BEAT cancer! Photog & Science fan! #DisabledLife #BLM #MedicalValkyrie #CannabisIsMedicine She/They
🌱 katski 💙 @katkatski
15 Followers 808 Following
NZ @NZ_fund_MECFS
241 Followers 545 Following Anerkennung. Versorgung. Forschung. Jetzt! #OpferDerStaatsgewalt #LongCovid #MECFS #PostVac #NotRecovered #MillionsMissing #BC007 https://t.co/VVu3MaZ2y9
Miriam @miriamfrankmac
544 Followers 643 Following Comms. London. Coming back to life following Long Covid. Chasing peak health…
Patty Smith @Solutions2Work
3K Followers 5K Following US two-party oligarchy is guilty of genocide. The people must unite and help one another. Plant gardens, assist your neighbors, support small local business.
Alison Nolan @AlisonNolan9
2K Followers 2K Following Has a few biology degrees, did a virology PhD. Zero covid zealot™ Hard-line scientist© Covid avoider. #MECFS
Fred Aro @aro_fred25851
32 Followers 5K Following
robin markowski @robinmarkowski3
102 Followers 503 Following Red pilled since 2022 TM. Pissed off pastry chef and proud patriot. Pfizer injured in 2021.
Kate @onesmallbutton
35 Followers 693 Following
Laura Boné @2laurabone
286 Followers 889 Following Electric Vehicle Industry /Fighting ME/CFS & Long Covid
Noah Hoppa @SheersMan
186 Followers 653 Following
Sean G @InflammaSean
681 Followers 1K Following #MECFS, #PASC, chronic illness & science. For better or worse, will at times post none of that, but instead silly stuff or nature photos or whatever-whatevers
Talisha Almarez @TalisAlmar
62 Followers 5K Following
lamar #StandWithUkrai.. @LamarSees
267 Followers 537 Following Here for latest info on ME/CFS and Covid-19 from doctors and patients.
Moriah (Galores Flyin.. @GaloresCircus
3K Followers 1K Following Covid. Info literacy. Research. Healthcare/Repro. Social science. Swearing/Irreverence She/her Vax+mask+clean air! 😷 ☁️GaloresCircus at Blue Sky
Renate-new account�.. @Renate834601
83 Followers 423 Following Myalgic Encephalomyelitis since -87,severeME,Bedbound, diagnosecriteria /name matters!separate ME from ME/cfs; use ICC -G93.3 for ME❤️#Enterovirus
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Kaylah Ascol @AscolKayla66798
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Amy Rochlin @amyrochlin
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Germaine Kahalehoe @GermaineKa145
86 Followers 5K Following
Lauretta Ariyoshi @LaurettaAr83085
18 Followers 3K 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!
Just blissriot🔸 @blissriot
42 Followers 204 Following Any pronouns ok, she/her usual. Learning to be disabled. IIH, ME/CFS, Fibro triple fun play! Also 🧙🏽♀️🦉🌙🌱👻🍄
Michael O'Brien @mikeobrien777
126 Followers 498 Following
Lori McKenzie @loriinreallife
694 Followers 644 Following Married to @GaryDarty, Mom, Therapist, Coach, OD Consultant sidelined due to #Sjogrens #Autoimmune #Dysautonomia #pwME Guardians, Browns, OSU fan.
Amera Bouch @AmeraBouch8383
71 Followers 5K Following
me_ots @te_rztoo
550 Followers 1K Following ME/CFS (chronic fatigue-syndrome) since 2018/19. We need basic + therapeutic research ! #PEM
Lili 🐝 @RealSoliliqui
511 Followers 716 Following
LA2LAGURL @La2Arceri
426 Followers 2K Following Questioning everything : 𝚖𝚎𝚗𝚊𝚐𝚎𝚛𝚒𝚎 𝚘𝚏 𝚠𝚑𝚊𝚝 𝚠𝚊𝚜: spiritual & narcissistic abuse survivor #CPTSD: severe #ME/CFS: POTS, CCI 20yrs
Franck Germain @CryptoChickO6
46 Followers 621 Following #VOLT MAXI (The Peoples Crypto) Get VOLTED or get left behind ⚡️⚡️⚡️ Let's shock the world together! https://t.co/7kFbTxBr3v
Ellen Streiff @EllenStreiff
8K Followers 8K Following Those that can give up essential liberty to gain a little temporary safety deserve neither liberty nor safety. — Benjamin Franklin ✝️ 🙏🏻 ⚖️🦅🇺🇸
Síofra Heraty @HeratySiofra
266 Followers 1K Following Assistant Psychologist with the Irish HSE, visiting researcher at Birkbeck, University of London. Views/likes/RTs my own.
Sunny🌻 7Blessed �.. @Sevenblahs
193 Followers 1K Following Info share only. ( I'm not a med dr.) RT's are not endorsements.
Erin Tarantino 🇨�.. @erincandy
10K Followers 3K Following 🇨🇦SPORTS/#LeafsForever•Movies/History/Gaming/Politics/Creator/Cat Rescuer• Anti-disinfo activist. Leukaemia cancer survivor! #LongCovid since March 2022 ♑️
Tre K. Ker @trekker2x
474 Followers 4K Following
Slapchop 🇵🇸 @SplendidSpeseia
641 Followers 757 Following Chronic illness biohacker/self-experimenter. Psychonaught when able. Disabled by ME/CFS. Daoist, Marxist, Trans 🏳️⚧ She/They. Embrace the Void 🤩😵💫🤩
Litsa Dremousis 🐳 @LitsaDremousis
7K Followers 5K Following ALTITUDE SICKNESS (Future Tense Books). Upcoming: FIRE IN THE HOLE: A EULOGY FOR THE LIVING. Longtime freelance essayist for The Washington Post, et al. #pwME
Anthony @LCAdvocate22
46 Followers 21 Following #Longcovid sufferer since my Pfizer booster shot on 1/31/22 Triple Anticoagulation Therapy from 05/12/23-10/12/23 Stent in Left Iliac Vein on 11/01/23.
Susan Dougill @SusanD1408
459 Followers 657 Following I am a married mother of one teenage son. I have a wonderful husband who cares for me. I have ME/CFS Fibromyalgia, POTS, peripheral neuropathy & other things
Bilge Cetin @CetinBilge
132 Followers 596 Following Living in the Netherlands. I have ME since 2019. I am mostly using twitter to connect with the ME folks and researchers. tweets in english, dutch and turkish
Timo Strotmann @TimoStrotmann
4K Followers 280 Following Tech Enthusiast - Software Engineer - Health Advocate Co-Founder of https://t.co/0klWgSEzbp
NZ @NZ_fund_MECFS
241 Followers 545 Following Anerkennung. Versorgung. Forschung. Jetzt! #OpferDerStaatsgewalt #LongCovid #MECFS #PostVac #NotRecovered #MillionsMissing #BC007 https://t.co/VVu3MaZ2y9
Laura Boné @2laurabone
286 Followers 889 Following Electric Vehicle Industry /Fighting ME/CFS & Long Covid
Neseret Bemient @JourneyofHope4U
2K Followers 244 Following Writer. Psych RN for 17 years/30,000+hrs. Mental Health Advocate. Supporting you implement Metabolic Therapies and Ketogenic diet for optimal Brain health.
LD @drldyment
125 Followers 138 Following Mother, Family Physician, Myalgic Encephalomyelitis and Breast Cancer warrior - humbled and grateful for the life lessons - it’s personal.
Nadine 🇨🇦 Long .. @NS_Beachbum
798 Followers 1K Following Long Covid/ME, POTS and MCAS since 2020 Nova Scotian, collects beach glass, cat mama (2), retired Comments are MO @[email protected] - Mastodon
Ryan Andrew @RyanAndrewX
177 Followers 133 Following NeuroImmune chronic illness recovery(LC/ME) journey. Former MMA athlete/ streamer/Neuroscientist - I tweet about philosophy/Sports/LC-ME/ etc
Amy Rochlin @amyrochlin
852 Followers 2K Following Executive Director, @MetrodoraFdtn - Proudly working to advance progress for patients living with chronic, multisystem disorders. Opinions are my own.
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!
YonkerLab @LaelYonker
1K Followers 774 Following The Yonker Lab at Mass. General Hospital studies neutrophilic airway inflammation, as seen in pediatric COVID-19, cystic fibrosis, and childhood pneumonia.
Michael O'Brien @mikeobrien777
126 Followers 498 Following
charlie @maskedupcharlie
370 Followers 137 Following here to learn more about disability justice 🏳️🌈 they/them | I love zines, comics, googly eyes
Long Covid Doc @longcoviddoc
701 Followers 264 Following EM Doctor with Long Covid. Tachy since March 2020. Partly recovered. Here to learn & support. Tweets definitely not medical advice. #LongCovid can get fucked.
me_ots @te_rztoo
550 Followers 1K Following ME/CFS (chronic fatigue-syndrome) since 2018/19. We need basic + therapeutic research ! #PEM
LA2LAGURL @La2Arceri
426 Followers 2K Following Questioning everything : 𝚖𝚎𝚗𝚊𝚐𝚎𝚛𝚒𝚎 𝚘𝚏 𝚠𝚑𝚊𝚝 𝚠𝚊𝚜: spiritual & narcissistic abuse survivor #CPTSD: severe #ME/CFS: POTS, CCI 20yrs
@[email protected].. @Isanthropia
341 Followers 374 Following “well actually” acolyte • lives in an eco-chamber • super recognizer • often underestimated.
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.
Rene Sugar @renesugar
4K Followers 4K Following
Anthony Zhang 🍷 @anthony_j_zhang
12K Followers 1K Following co-founder @vinovest1. I tweet about whiskey, wine, and startups.
Dan Elton @moreisdifferent
6K Followers 2K Following Problems are solvable - so let's solve some! Speak the truth, even if your voice shakes. Leave me anonymous feedback here: https://t.co/LQ5eZWwDst
Royal Free 1955 @RFH1955
2K Followers 2K Following ME/CFS archive, especially RFH 1955. For education, not profit. Research @CiaranJ_Farrell & @Needles_Toosay. https://t.co/bYPmViWQCG.
Michael ⚕️🦁 @MichaelCWilder
2K Followers 2K Following Long Covid 3/22--BS Biology-Lawyer RETWEET not endorsement--I'm gathering/reviewing evidence of Causation and Facts re #LongCovid and Pandemic
dr. rattus flattus �.. @RattusFlattus
737 Followers 1K Following Disabled academic, animal enthusiast #pwme , vax injured and fuck you no I’m not an “anti vaxxer”
Dr Mikel Delgado, PhD.. @mikel_maria
8K Followers 3K Following Cat behaviorist at https://t.co/1xiUJ89dyv | Author of PLAY WITH YOUR CAT!, 2024 @TarcherPerigee | threads/IG: at mikel.delgado | https://t.co/3XQk5Wo0K9
André Saravia @ssaraviaandre
1K Followers 493 Following #LongCovid Co-Research | President @longcovidchile | ICU Nurse Technician | @Patientled Partnership #LongCovid | Traduction EN-ES 🇨🇱
T @Yrrepmot
345 Followers 1K Following Gardener 🌱weather fanatic ❄️ lefty+ ✊🏼 gay🔺MUFC mad 🇾🇪, ADHD, co-morbid 💀: ME, HIV+, hEDS, Fibro, complex mental health 🙃
Dr Rachel Clarke @doctor_oxford
284K Followers 4K Following Palliative care doctor 👩🏻⚕️ Writer DEAR LIFE, BREATHTAKING 📚 Rep: @AitkenAlexander 📝 Founder: @hospiceukraine 🇺🇦 THE STORY OF A HEART out 5.9.24 🫀
Olive Siffleur @OliveSiffleur
3K Followers 5K Following Go to now, ye rich men, weep and howl for your miseries that shall come upon you.
Eileen 🔊 @TurnItUp4ME
2K Followers 933 Following Advocate; Former Federal Committee Advisor, Department of Health and Human Services, Washington, DC
Candles and Chronic I.. @candlelovers12
408 Followers 176 Following Disabled spoonie. lover of candles and stuff. #pwME #POTS. Link is iherb rewards. I love this company.
Natalie Hanson @nhanson_reports
4K Followers 5K Following I report Oakland/SF legal news & Cali politics @CourthouseNews fueled by📚☕️🌲🧶🎶|Contributor @ChicoSolNews /Past @SJSpotlight @marinij @chicoer @theorion_news
Szyzygy @Szyzygy2
1K Followers 2K Following Student of uncertainty, evidence, chronic illness, curiosity, and all things imperfect and perfectable. Attempting to live the 80/20 rule. Novid.
Alan Baxter ♛ @AlanBixter
53K Followers 28K Following @[email protected] Immunologist. Tweets represent personal opinions. Suggestions do not constitute medical advice. I’m here live, and I’m not a cat.
Dale🌱 @seadale1
805 Followers 2K Following HIV1987, LongCOVID 2020, Medical Cannabis Policy,Advocacy,Care 35 years Patients Helping Patients,Peer Support has many paths,Plant Medicines saved my life
NickyProctor @NickyProctor
1K Followers 4K Following Writing up my #PhD in coach learning & development @LeedsBeckett and campaigning for better healthcare #MEcfs #POTS
zedsrigil @sunsweptforest
430 Followers 852 Following forest.haven they/them autistic me/cfs and more nature music outer space
Verena Hackl @ver_hac
847 Followers 308 Following mainly interested in mocap, gait analysis & PAIS | prevention & disability justice NOW | more facts, less opinions | #Ableismkills #SaubereLuft
Kate @katemeredithp
6K Followers 2K Following Photography. Genealogy. Digital Marketing. 🏳️🌈 Unintentional #LongCovid awareness advocate and #LongHauler - @c19recovery
SEDSConnective @SEDSConnective
5K Followers 3K Following Sympt.Hypermobility EDS HSD NEURODIVERGENT vol. Charity / health/education/care/work Chair/Founder Jane Green MBE @JGJanegreen Patron Dr Eccles @Bendybrain
Prof Deborah Lupton M.. @DALupton
25K Followers 1K Following Professor @UNSW Sydney. Risk, health, digital tech. Blog https://t.co/Yh52haFKRu
Love thy neighbor: we.. @CCSDMaskUp
2K Followers 853 Following Commentary from a coloradan parent who wants people to understand the COVID situation in Colorado. Tweets A LOT about masks. Blocks misinformation spreaders
Alisa Valdes, Novelis.. @AlisaValdesRod1
28K Followers 29 Following 📍NM I write. I coffee. I mogul. 1+ million novels in print. Environmental Justice Writer NMED.
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
Rebecca W @ontiptoe02
617 Followers 2K Following Disability is a way of life & happy is the goal. Write, read, & craft as I’m able. 👩🦽🚶🏼♀️she/her ❤️🧡💛💚💙💜🖤🤍 Teach, homeschool mom, to all girls.
Oonagh Cousins @oonagh_cousins
1K Followers 559 Following Visiting Research Fellow at Oxford University. Studying Long Covid. Ambassador for charity @long_covid BBC piece:
Increasingly I've been realizing that the healthy world sees meeting with family and friends as my 'silver linings,' while it's actually the opposite. I go from PEM to PEM and I cannot wait to have an empty schedule again so I can return to my (shitty) baseline. #MECFS
Just had court via Zoom, have to be out of the apartment in 10 days due to being disabled by #Covid and not being able to afford rent. This is what #LongCovid does to people. I asked for at least 30 days, they said no. This is not fair. Who the hell can move out in 10 days?!
I miss baking. Before I got sick I would bake almost one new thing every week.
me: hey I almost died 5 years ago today! family member: stop living in the past Ooooof okay yes that’s right this is why we talk to twitter not family
Now that I’ve been feeling significantly better for several weeks, part of me wants to use up the energy while I still have it….because I never know when it’ll go away again. The other part tells me to pace and rest so I don’t get worse again. Last night I wrote 4,000 words but…
I am so tired of the anti-squatters propaganda & hysteria. Do people understand media is hyperfocusing on squatters so the public isn’t talking about the RECORD rent/housing prices & RECORD number of unhoused Americans? THE SYSTEM is broken, and people are VICTIMS. We are all…
It often happens to me that I suddenly see some pictures of people or groups of people on social media and I feel so relieved that they are back in their masks! What a great feeling. Then it always turns out that these photos are actually from 2021.
Today’s the official five year anniversary of the day I almost died!!! I bought myself some sour skittles as a treat and also as a way to trick myself out of dissociation. I’ve changed a lot since that day, some for the better, some for the worse. Glad to be here (most days)!
After I got sick w #MEcfs in 2014 I never sold my #triathlon bike, it represented hope that I'd get healthy again. But this past weekend I sold it. It feels like another #loss but I promised myself if I ever get healthy again I'll reward myself w a brand new tri bike.
@phi_psd I am so sorry. I’m on like Day 1549. I was immediately disabled by Covid in very early 2020, & it has been horrifying watching everyone be forcibly infected & misled into believing folks will magically absorb these infections with no negative consequences, & only those with bad…
Long Covid day 465. I just left my doctor’s office, and she doesn’t think I’ll ever recover. She only has one Long Covid patient who has 100% recovered. So yeah, I guess that was my life, done at 32, lol—so much for those super mild variants. Thanks for nothing, public health.
There's a really big difference between supporting the mental health of people with MECFS/LC (necessary), and weaponising mental health for the oppression and denial of their physical disease. This is a distinction a lot of people, unfortunately, need to learn. #MECFS
The answer maybe is REST and do nothing but I have ADHD and other mental health problems and my mind goes to really dark places If I dont do anything and think in what my situation is. I guess I should become a master in meditating but it's just so boring. I feel so trapped.
What things do u do for not getting (more) depressed when u are in bed? I wanna read books, write, play an instrument, whatever thing to make this shit better but I am too tired for anything. Social media and shitty shows are not good for my mental health but Idk what else to do
I got a letter. So now that I'm 99% bedbound and can't even sit or leave the house, I finally qualify for free public transportation by bus. Lol. Those things are always too little too late. Help is always 1000 steps behind your basic needs when you're disabled/chronically ill.
Another Monday equals another week of wondering when the EEOC is going to make a determination on my case. I’m glad it seems like they are taking it seriously at least (doing more interviews etc.), but it’s been about 2 years and 9 months since we filed; I did NOT expect just…
This might seem kinda small to others-but it isn’t to me, not anymore! I took a shower yesterday, was able to do some light household cleaning yesterday, and engage in some verbal conversation with ZERO P.E.M. (Post-exertional malaise) issues! #LongCOVID
@keetmuise We watch that movie at the start of every pandemic.
@keetmuise Contagion is ridiculous. It shows doctors and public health trying to slow the spread rather than accelerate it.
@keetmuise And that’s the dot many are not connecting—population-wide immune dysfunction will definitely play a huge role in how high the death rate will be. This cannot be ignored.
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