iiinova — where your digital self keeps evolving

Reposted by Olenka Sayko

Jessica Ellis @baddestmamajama.bsky.social · 26/06/2026

Here’s how I realized I had long covid. I got sick but improved. A month later was Christmas. I did all my usual activities - baking, hosting, good solid walks. On New Year’s Day I collapsed getting out of bed, couldn’t get up for a week, and never, ever got that level of energy back.

Quote from article: In Wired, Levinovitz took aim at claims that Long Covid patients with ME/CFS are limited in their ability to exercise. He argued that the problem isn't exercise, but the belief that exercise is harmful.
"Patients cursed themselves by believing their symptoms had a strictly biological cause," he wrote.

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Olenka Sayko @osayko.bsky.social · 15/04/2026

JD, I hate to break it to you but if you disagree so stridently with God’s emissary on Earth about BASIC theological matters, you might just be Protestant.

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Olenka Sayko @osayko.bsky.social · 15/04/2026

Watching the light leave a normie doctor’s eyes as I describe the myriad of ways my brain and immune system have fucked my body is pretty entertaining.

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David Kocik @davidkocik.bsky.social · 12/01/2026

With One Battle After Another winning big at the Globes last night, it's the perfect time to read @angelicabastien.bsky.social's fantastic analysis of the film and Teyana Taylor's fantastic performance that provides an interiority the script often lacks

vulture.com

Black Actresses Are Carrying One Battle After Another

Teyana Taylor, Chase Infiniti, and Regina Hall propel the film’s most conflicted ideas, for better and worse.

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Jessica Ellis @baddestmamajama.bsky.social · 28/08/2025

And if you fear that you will now be at higher risk of death and complications because you cannot stay up to date on vaccines, please consider for a moment that that is the burden you’ve been happy to put on disabled and vulnerable people for several years.

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Jessica Ellis @baddestmamajama.bsky.social · 28/08/2025

If you are angry, as you should be, that restricting access to the vaccine will make covid worse and more dangerous, please start wearing a mask, which actually does a significantly better job of preventing transmission in the first place.

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Olenka Sayko @osayko.bsky.social · 11/07/2025

The compounding pharmacy that used to prepare my thymosin alpha-1 is no longer doing it and my usual compounding pharmacy doesn’t offer it. Anyone with #LongCOVID or #MECFS and at TA-1 script have a compounding pharmacy that offers it? If so, details pls!

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ella t. holmes (wizard) @ellatholmes.bsky.social · 29/06/2025

#Disability is the only universal marginalisation, making up 1/5 to 1/4 of the world's population, yet so few of our stories are published! Help me uplift disabled & chronically ill #writers by supporting & submitting to this #anthology ❤️‍🔥 Guidelines: shorturl.at/jges6 Deadline: July 31st 2025.

a red square image with translucent flames in the background. All text is in capital letters, and reads "DISABILITY IN DYSTOPIA ANTHOLOGY". The bottom of the image features graphics in dark red, purple, and pink, of several differently disabled people holding flags, signs, and capes.

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Olenka Sayko @osayko.bsky.social · 30/03/2025

I’m always so tickled when people go “ugh when did [insert thing here] become political?” And it’s like, sorry babe, but as long as groups within society use the state as a cudgeol to decide who has what rights and how collective resources are allocated, most things will be political.

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Olenka Sayko @osayko.bsky.social · 26/03/2025

🚨 🚨 🚨 Really important action for #LongCOVID community and allies! Call or email your federal legislators to let them know #NoLongCOVIDcuts! This condition impacts millions of Americans, many of whom are severely disabled with NO treatments!

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Olenka Sayko @osayko.bsky.social · 06/03/2025

Sprained my ankle. Time for all these peptides I’ve been shoving into my body to do something miraculous.

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Ліна 🌻🇺🇦🍁 @castleton.bsky.social · 22/02/2025

As we approach the 4th and 11th anniversaries of the war that Russia started, it is important to remember that this has always been a blatant land grab that turned genocidal as soon as they realized Ukrainians do not want to be Russians

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Naomi Harvey PhD @naomidharvey.bsky.social · 20/02/2025

New Lancet study shows extremely low, 2%, recovery rate from Long COVID. However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID. www.thelancet.com/journals/lan...

Screenshot from the Lancet.com

Interpretation

Among participants followed up to 3 years after initial infection, those with current Long COVID had worse physical and mental health outcomes. The majority of those with Long COVID did not resolve, with less than 2% having resolved Long COVID. The resolved Long COVID cohort had moderately worse physical and mental health compared with those never-having-Long COVID. COVID-19 vaccination was associated with better outcomes.
Funding

Centers for Disease Control and Prevention.

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Olenka Sayko @osayko.bsky.social · 20/02/2025

Anyone in the #LongCOVID or #MECFS universe tried the antimicrobial and antiviral peptide LL-37? Would love to touch base about folks’ experiences and dosages.

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Post-Viral Trials @postviraltrials.bsky.social · 18/02/2025

Regeneron is recruiting for a phase 2 RCT of REGN7544 (an NPR1 antagonist mAb) for POTS. They’re seeking 81 patients in Pasadena, CA; Carlsbad, CA; Nashville, TN; and Clearwater, FL clinicaltrials.gov/study/NCT065...

clinicaltrials.gov

ClinicalTrials.gov

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Olenka Sayko @osayko.bsky.social · 19/02/2025

It’s wild how much calmer my nervous system feels when I’m on my period. I wish I knew what was happening in my body that makes it so and how I can reproduce it the other three weeks of every month. 🤔 #LongCOVID

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Olenka Sayko @osayko.bsky.social · 14/02/2025

Anyone with #LongCOVID, #MECFS, or #ChronicLyme tried supportive oligonucleotide technique (SOT) for EBV, CMV, HHV-6, and Lyme and its co-infections? My functional medicine doc does it in his office and I’m considering it to try to shift symptoms. Would love personal anecdotes!

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Olenka Sayko @osayko.bsky.social · 14/02/2025

Have a tonsil and sinus infection. Happy Valentines Day to me from AmoxClav. 😥

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Mark Follman @markfollman.bsky.social · 12/02/2025

Incredible: Russ Vought’s daughter has cystic fibrosis and benefits from a “miracle drug” made possible by the National Institutes of Health—an agency Vought now aims to gut as part of the Project 2025 attack www.motherjones.com/politics/202... Scoop from @motherjones.com’s @metrauxjulia.bsky.social

motherjones.com

Project 2025 is gutting medical funding that helped Russell Vought's own kid

Its architect's daughter has cystic fibrosis—and benefits from a "miracle drug" backed by an agency he's attacking.

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Olenka Sayko @osayko.bsky.social · 11/02/2025

I’m on day 5 of Sofosbuvir. The first two days I only took one pill, but have been taking 2 the other two days. Very up and down but the ups are very up. My nervous system feels very calm on those days.

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Olenka Sayko @osayko.bsky.social · 09/02/2025

Lmao at the idea that DOGE found fraud but an accounting firm didn’t. Like I don’t have that much faith in the Big 4, but I have enough faith that they’d be able to find fraudulent debt obligations…

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Styna Lane @stynalane.bsky.social · 07/02/2025

Reminder that protecting each other from illness and potential disability/death when the people in charge actively want us dead is actually punk as fuck. Simple disease prevention is community care. It is resistance. Please mask up, especially at protests.

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Matt Novak @paleofuture.bsky.social · 05/02/2025

If you work for the federal government and are tempted to take Musk’s “buyout” offer please know that you’re never going to see that money.

Jeff Stein &
@JStein WaPo
A federal worker sent me audio of a call that HR did today with staff about "deferred resignation" agreements offered by DOGE ... I think this is pretty well understood by now but helps confirm what many suspect
The audio goes:
Employee: Lets say I accept the agreement tomorrow - you were to rescind the agreement and they were to stop paying me on Friday ... we would have no recourse available?
HR official: Yes... as the agreement is outlined that is absolutely correct
11:40 AM • 2/5/25 • 168K Views

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Matthew Cortland (they) @matthewcort.land · 04/02/2025

Thing you can do, action you can take: Register for our Congressional Medicaid Advocacy Webinar on 2/10 @ 4PM ET MAGA wants massive cuts to Medicaid, resulting in catastrophic coverage losses. Learn how to advocate for Medicaid with the legislative staff of a Congressperson or Senator. Reg link ⤵️

patreon.com

2/10 at 4PM ET: Congressional Medicaid Advocacy Webinar | Matthew Cortland

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c0nc0rdance @c0nc0rdance.bsky.social · 05/02/2025

Hey, guess what has suddenly disappeared from the HHS website? Any mention of this $306M investment in pandemic flu preparedness that was approved in the last days of the Biden administration. Not DEI. Not USAID. Our surveillance & response program around H5N1.

theguardian.com

Biden administration allocates $306m in its final days for bird flu response

‘Critical’ funding comes as H5N1 outbreak intensifies and will go toward developing a response to the virus

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Marisa Kabas @marisakabas.bsky.social · 05/02/2025

“These first two weeks of Trump’s new term and the extensive executive orders removing nearly every right I have as a trans American have been by far the worst in all my professional years.” In The Handbasket’s first guest piece @katelynburns.com explains the toll on trans journalists right now:

thehandbasket.co

GUEST COLUMN: The current ‘mindf*ck’ of being a trans journalist

Katelyn Burns explains the personal and professional toll of Trump's anti-trans executive orders.

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Clara Jeffery @clarajeffery.bsky.social · 04/02/2025

The people who rise to lead now will be the leaders. And the people who do not never will.

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Olenka Sayko @osayko.bsky.social · 04/02/2025

Lowkey love that because there were four new variables in play during this two day POTS/MCAS flare, the only way I can make sure it wasn’t the new medication is if I wait a couple weeks for my body to calm down and then try again in the *hopes* that my body doesn’t react violently again. No notes.

Filthy beat up furby. Caption reads: “Bothered. Dehydrated. Tired. Not in my lane. Brain fog. Struggling.”

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Olenka Sayko @osayko.bsky.social · 01/02/2025

Conspiracy theorists have been worrying about Big Tech tryin got microchip them with vaccines when they really should have been worrying about Big Parma.

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jamelle @jamellebouie.net · 31/01/2025

hey question, is this bad?

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Olenka Sayko @osayko.bsky.social · 31/01/2025

I feel this so strongly, but it’s hard as a disabled person to have much faith in the Left caring and acting to make a better world when all of their actions have explicitly done everything to keep people like me out of their spaces and confined to my home or risk further disablement from COVID.

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Olenka Sayko @osayko.bsky.social · 30/01/2025

Building a massive detention center in a place not subject to constitutional protections where they intend to hold people indefinitely feels very concentration campy. www.usatoday.com/story/news/p...

usatoday.com

Trump orders mass detention facility to house 30,000 migrants at Guantanamo Bay

President Trump ordered officials to create a 30,000-person migrant facility at Guantanamo Bay for "the worst criminal illegal aliens."

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Olenka Sayko @osayko.bsky.social · 28/01/2025

Everything is shit but the Sofosbuvir I ordered from abroad is almost here so once I get back to baseline post-rapamycin my doc and I can start my antiviral combo!!! I know truvada and Sofosbuvir don’t work for everyone, but they’ve worked for some and I just really need a #LongCOVID win these days.

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Olenka Sayko @osayko.bsky.social · 28/01/2025

Doctors when you ask them how a drug prescribed off-label works #LongCOVID #MECFS

Mark Scout in Severance in a suit against a white office wall with his index finger pointing upwards. Caption reads “The work is mysterious and important.”

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Olenka Sayko @osayko.bsky.social · 26/01/2025

Dave Lucas, “Love Poem for an Apocalypse” from the collection “Resistance, Rebellion, Life: 50 Poems Now”

LOVE POEM FOR AN APOCALYPSE
Dave Lucas

I wish I'd met you after everything had burned, after the markets crash and global sea levels rise.
The forests scorched. The grasslands trespassed.
My love, it is a whole life's work to disappear— ask the god with his head in the wolf's mouth or the serpent intent on swallowing all the earth.
Ask the senate subcommittee for market solutions for late capitalism and early-onset dementia.
You and a bird Au could make me believe in fate.
I think we might be happy in the end, in the dark of a hollow tree, a seed bank or blast-proof bunker, if only you would sing the song I love, you know the one about our precious eschatology, the one I always ask to hear to lull me back to sleep.

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Olenka Sayko @osayko.bsky.social · 22/01/2025

I think I’m going to keep at it with rapamycin but get a pill cutter for tiny pills and cut it into a quarter so start at 0.25mg instead of 1mg. Will skip at least this upcoming dose to get it out of my system and then restart in another week or two once I’ve returned to baseline

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Karen R @kricketts.bsky.social · 22/01/2025

Complex care patients are begging for help in Canada - who is going to help them? It's inhumane to leave people stranded, without care.

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Annika Barber @annikabarber.bsky.social · 21/01/2025

If anyone happens to need it this week for...reasons...this is the best graphic on the complexity of human sex determination I've ever seen. I use it in an undergrad course on gene regulatory mechanisms. Shoutout to @unamandita.bsky.social! www.scientificamerican.com/article/beyo...

scientificamerican.com

Beyond XX and XY: The Extraordinary Complexity of Sex Determination

A host of factors figure into whether someone is female, male or somewhere in between

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Olenka Sayko @osayko.bsky.social · 19/01/2025

So I think rapamycin is fucking me up. Took second dose today and I just fell off a cliff. My POTS is worse. I think it’s also messing up how my body processed magnesium. Will skip next week’s dose and see if I get back to baseline. #LongCOVID

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the double life of véronique emma houxbois @emmahouxbois.bsky.social · 18/01/2025

just fucking zooming in on this like oh there’s a pabst can for blue velvet, there’s cheetos for the fablemans, just a whole language of what people valued most and how fans talk to each other.

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Pop Heist @popheist.com · 17/01/2025

"With David Lynch, I feel like he didn't find the switch. He went right ahead and installed one of his own, flicked it on, and left a light burning somewhere in my core that'll never go out." — @awalrusdarkly.bsky.social on the power of David Lynch popheist.com/your-first-d...

popheist.com

Your First David Lynch Film Changes You - Pop Heist

David Lynch was an auteur whose work — like 'Mulholland Drive' — expanded the minds of those who took it to heart.

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Olenka Sayko @osayko.bsky.social · 17/01/2025

Learned yesterday that my husband has never seen Twin Peaks and now I’m so excited to introduce it to him and watch him watch it but also am so deeply jealous he gets to watch it for the first time.

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Olenka Sayko @osayko.bsky.social · 14/01/2025

This exposé on Neil Gaiman is truly horrifying. I appreciate that the journalist included context from BDSM-knowledgeable folks to note that the encounters described by the victims were actually not simply kink that the average Joe just didn’t get. archive.is/2025.01.13-1...

archive.is

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Olenka Sayko @osayko.bsky.social · 13/01/2025

Being a medical guinea pig is so fun. Will this new intervention suppress my immune system or help regulate it? Throw it down the hatch and let’s find out!

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Todd Davenport @sunsopeningband.bsky.social · 12/01/2025

I get asked a lot by physical therapists how they can get involved with their communities, and the LA fires have pointed out the importance of evacuation planning that considers the needs of people with disabilities. Disability shouldn’t be a death sentence. That seems basic. Let’s start there.

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