Olenka Sayko @coco_chatel
Ukrainian-American. Theater/film/music/book lover. Former arts finance girlie. Left-ish Libertarian-ish. Life on pause due to disabling #LongCOVID. White Plains, NY Joined October 2008-
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@rachioella I’m already on a substantial regimen of antihistamines and mast cell stabilizers. This is just unavoidable because IVIG causes huge biological shifts in the body.
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Gotta say, not loving the autonomic and mast cell instability that immediately follows my IVIG infusions. Now to wait for it to settle. The question is whether it will take less time than after the first cycle (~10 days) and whether I’ll see a further bump in baseline.
@TinyWriterLaura There is an epidemic of piss-poor analogies on this app and we need to talk about it more.
Like it is deeply annoying/unpleasant to be flushing scarlet red when I use my arms.
@verenabee You can ignore anything if the price is right and you aren’t burdened by conscience.
@angryhacademic Oh I didn’t realize he was working on his memoir.
Olenka Sayko retweeted
Why is it that brain retraining seems to only work for complex, poorly understood chronic conditions and not … anything else? Couldn’t be healthcare workers exploiting a knowledge gap… could it? That’s a question a real journalist would’ve asked @wired — if you’d actually commissioned one
@Illusionist999 @davidtuller1 @awgaffney Because he doesn’t have an answer. Engaging with the science and questions presented to him would unmask him as having the depth of a contrarian social media influencer rather than a scrupulous evidence-based physician-scientist he likes to present himself as.
Olenka Sayko retweeted
@davidtuller1 @AlanLevinovitz A reminder that Wessely tried to enlist Godwin of Godwin's Law, whom he knew, to his cause. Godwin looked at evidence and supported the patients, even at one point joining patient forum. For the record: all personal abuse is appalling and I unequivocally condemn it.
Olenka Sayko retweeted
Actually, @AlanLevinovitz failed to mention two high-profile studies of mind-body programs. One of the Lightning Process in a Lancet journal that now has a 3,000-word correction, and the null early results from a Scandinavian trial of the Gupta program. Weird to ignore them.
The argument seems to be: * Any new idea with limited evidence for long covid involving any body system below then neck: good, exciting, worth sharing, fantastic * Any new idea with limited evidence for long covid involving an area above the neck: awful, shaming, horrible.
Olenka Sayko retweeted
Modulating a signal and generating one are different claims requiring different evidence. Mindfulness reducing pain perception has known mechanisms. The mind producing tissue pathology, autoantibodies, or lesions does not have equivalent evidence.
There's a glaring double standard: People are willing to accept that mindfulness can reduce pain, improve fatigue and even regulate inflammation. But the moment you suggest that the same mind-body connection can cause pain, fatigue and disability it's offensive, even cruel.
@sunsopeningband Listen, self awareness is for people in therapy, not the ones therapizing.
Olenka Sayko retweeted
Good point here. My colleagues and I are not baffled. Don’t mistake uncertainty for impotence. That’s not how science works.
5 "The scientific community remains baffled" "Baffled" is not neutral. Scientists can be uncertain without being baffled. A field can be incomplete without being helpless. "Baffled" makes long covid research sound like people staring at a wall with no progress.
@loscharlos @bhanlon15 But this religious studies professor knows better, okay? He is a very special mind brillianter than all the rest. He thinks very big thoughts and you and the smooth brained editors of CELL just wouldn’t understand.
the dangerous implications of its assertions and let that inform your future work. People with Long COVID aren’t just some nebulous intellectualized concepts. We’re real people and no one wants to get better more than we do. /end
could work for some to improve quality of life while we wait for more robust treatments. This article was thoughtless at best and profoundly harmful at worst. I hope you really sit with the criticism that has been leveled against the shoddy quality of the journalism and
Strongly urge those who have weighed in on the WIRED #LongCOVID piece to send a letter to the editor. Online discourse is one thing, but it’s important to let those in positions of authority know how they’ve misstepped. My letter to the editor is posted below in this 🧵
For those who wish to provide feedback to WIRED on this piece, you can email the editor at [email protected] and CC [email protected]
LongCovidPharmD @organichemusic
36K Followers 1K Following Doctor of Pharmacy. Long Covid, EBV & ME/CFS researcher & clean air advocate. Here to share & learn. Tweets not medical advice. https://t.co/lKQezPwtQs
Hannah Davis @ahandvanish
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John K @j_b_kennedy
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Shaney Wright @ShaneyWright
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Prof. Akiko Iwasaki @VirusesImmunity
212K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII
Laura Miers @LauraMiers
75K Followers 13K Following I have been on this cursed app for over 15 years. I lost my personhood when Covid permanently disabled me in my 30s in 2020, & the US government abandoned me.
Brian Fog @useless_priest
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penny #ME🕊️🕊�... @TheOldLostRoad
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Sam @sublimepilgrim
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charlotte @CLT_truth
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omar almasri 🇵🇸 @omaralmasri123
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Marko @marko_orlic
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Rachel @rachioella
199 Followers 499 Following Severe LC/CFS ie Hell since 2023 . interested in research and awareness to help improve QOL Irish 🇮🇪 34 former travel , outdoor and adventure addict 🌳🌊🌅🌍
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Edward of the No Neck... @EdwardNoneck
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sally 🕶 😷 🪰 ... @sejwatson
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Cmacg 💙 @Cmacg3
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333 Followers 736 Following Particle 010. I mostly just go by Rosie, not one to stand on ceremony. No one is Chosen / Master Race. God loves us all equally. #CovidIsNotOver #LongCOVID
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bunny♥️🇨🇦�... @Bun_E_Kirwin
3K Followers 5K Following Please wear a mask in public, get vaccinated. Love, love the lake. #TeamCanada🇨🇦
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81 Followers 194 Following I sometimes break games. By accident. Mostly. Working on An Important Thing. Official rival of @seitz_eli.
klfiora @klfiora
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429 Followers 3K Following Am (trying to) delete access to photos just in case. Also on 🦋 and 🐘
nearly there @overstretcc93
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ia n @chemian99
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LongCovidPharmD @organichemusic
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Hannah Davis @ahandvanish
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John K @j_b_kennedy
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212K Followers 2K Following We study antiviral immunity and viral disease pathogenesis. #COVID19 #longCOVID #vaccines @HHMINEWS @YaleIBIO @YaleMed @YaleCII
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Putrino Lab @PutrinoLab
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577 Followers 214 Following chronically ill after a virus - ME, MCAS, Dysautonomia and more… ❤️🩹✨🌸
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20K Followers 1K Following Black Lives Matter. #FreePalestine 🇵🇸 “You have the writing of an assassin”. https://t.co/f77UrzqIuV
male slayer 𝜗𝜚 @caramelcolored
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🇵🇪✊🏽 Isabe... @IsabellaScar2
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Don'tUTalkAbtMissJenk... @Jamellbell
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arielle @ellycelly
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NLH @NLH2224
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Julie Bush @julie_bush
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Zweil @somethings_awry
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Ally Mutnick @allymutnick
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NO CONTEXT anthony fa... @theneedledrop
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Tara F, PhD MPH @TaraFotiPhD
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10K Followers 647 Following I used to stream full time but now I'm full time sick.
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701 Followers 22 Following
poems for namjoon @poemsfornamjoon
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Whitney Dafoe @DafoeWhitney
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Tanya Vyhovsky for Ve... @tanyavforvt
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202 Followers 27 Following
Daniel Missailidis, P... @DanMissailidis
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Jessica Riedl 🧀 �... @JessicaBRiedl
54K Followers 879 Following Fellow @BrookingsInst. Past: @ManhattanInst, Sen. Portman chief economist (2011-17), budget policy for 4 prez campaigns. Fiercely independent. Views mine.🏳️🌈
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Ben Noll @BenNollWeather
93K Followers 173 Following Global weather writer and meteorologist for @washingtonpost | Weather and climate analysis and visuals | #HudsonValley snow days
tayoncé @lambchoptay
2K Followers 2K Following writer. theatre artist. she/her. 1922. not a professional account. don't ever repost one of my tweets somewhere else without my permission.
Ubaka Ogbogu @UbakaOgbogu
47K Followers 33 Following Professor of Law. Member, RSC College. Tweets older than one month deleted. #BlackLivesMatter. he/him. *But it was my hometown, and it was home to us.*
Dr. Marcus Shepard @MarcusShepard
17K Followers 505 Following USC PhD in Communication/Scholar/Singer & Author of “Midnight Musings: Interpersonal Communication & Social Media”
Jerome Adams @JeromeAdamsMD
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Jack | amatica health @JackHadfield14
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Secretary Kennedy @SecKennedy
1.2M Followers 3 Following Official page of @HHSGov Secretary Robert F. Kennedy, Jr.You might like
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