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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Olenka Sayko retweeted
My heart goes out to Beth for doing this. I really hope the payback doesn’t last too long. It’s a very sympathetic article and she articulated her points so well 🩵
ALT Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health. Five years ago, she ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed. "I've done little things like attend a blood test at the doctors and been in bed for months after. So doing this interview, chatting away for 30 minutes, that could have an impact on me in 2027," she says. "But I felt like it was really important to do that to get the message out." She now only gets out of bed to eat and use the bathroom. Dobbin has been diagnosed with ME, or myalgic encephalomyelitis - a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Olenka Sayko retweeted
Lots is happening in the world of clinical trial reform!
I decided to put together a list - all of this was announced since June - and shared some thoughts:
abundanceandgrowth.org/p/is-…
Olenka Sayko retweeted
In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection
This procedure will be out-of-state, costly and have a long recovery
Please donate and boost! Ty
gofundme.com/f/help-emily-ge…
Olenka Sayko retweeted
The videos of the socialism conference discussing 'fitness' as a tool of capitalism are going viral as if it's some kind of wild argument. And then Dr. Oz just says it outright.
Olenka Sayko retweeted
📣BIG NEWS #LongCOVID community: $8 MILLION for a new Long COVID mechanistic clinical trials network: PROBE-PASC! As @MichaelPelusoMD announced at #ISLCPAIS today: CDMRP has awarded funding for this critical Long COVID research need--and YOUR patient advocacy made it happen!🧵1/x
ALT Graphic is top of a Long COVID Campaign press release, with LCC logo and text: Long COVID Campaign Applauds Department of War $8 Million Long COVID Grant to Establish PROBE-PASC Clinical Trials Network Bipartisan Hill Champions and Patient Advocates Win Research Victory for Over 21 Million Americans Living with Long COVID
Olenka Sayko retweeted
This note in the final book from Dolly Parton’s Imagination Library wrecked me last year when my daughter turned 5. Tearing up again reading it now.
Olenka Sayko retweeted
Mike Schur on the effect the Paramount-Warner Bros. merger will have on consumers:
“If Paramount and Warner Bros. merge, the combined company would become the largest buyer of original film and television programming in the United States. Those two companies currently operate as distinct buyers competing directly for shows and movies, each with its own brand and imprimatur.
An unlikely success like ‘Hacks’, which I executive produced, was made possible because of this creative diversity. The creators pitched that show all over town, but the only offer came from a single executive at HBO Max who had the vision, the institutional latitude, and the creative conviction to champion an unconventional project. If she’d been replaced by a Paramount executive, who was after a different sort of show, ‘Hacks’ might never have seen the light of day."
Read Schur's guest column for THR: bit.ly/4cbaYhc
Olenka Sayko retweeted
Study findings indicate PEM/PENE in ME stemming from previous a suspected/confirmed SARS-CoV-2 infection resembles PEM/PENE in pre-COVID ME, both functionally and physiologically.
This isn’t “conflation.” It’s an evidence-informed position. Time to let data guide the discussion.
Olenka Sayko retweeted
I developed sudden severe insomnia after a CT scan with contrast (not MRI). I collaborated with someone this also happened to, and we made a short survey to document cases so this can be formally studied.
If you’ve had a reaction to CT contrast, please fill it out (link below):
Olenka Sayko retweeted
Bangor Daily News: 'Congress has a plan to help people with chronic fatigue syndrome. It needs to fund it.'
'The NIH has a roadmap, the science is ready, and the plan is written. What is missing is the funding...'
By Amy Blackstone
bangordailynews.com/2026/08/…
Olenka Sayko retweeted
Donald Sutherland died from COPD.
He 'wore a gas mask to a party so everyone else could smoke'
The burden always lies with those most at risk to protect themselves.
Kiera Knightley thinks what a lark.
Outraged comments and quotes will see no current SARS-CoV-2 parallel.
ALT Sadly, he died on June 20th, 2024, after being admitted to hospice care for treatment of chronic obstructive pulmonary disease (COPD). The common condition affects around 2% of the UK population, and affects the lungs and causes breathing difficulties. A screenshot from The Express article on Donald's death
Keira Knightley reveals everyone secretly broke the no-smoking rule on set, so Donald Sutherland wore a gas mask to a party so everyone else could smoke.
Keira Knightley: There was a party that Donald Sutherland came to because the whole thing was that you weren’t allowed to smoke.
Rosamund Pike: Oh, yes!
Keira Knightley: He had it in his contract that nobody on the set was allowed to smoke anywhere near him, and you couldn’t smell of smoke. But of course, everyone smoked.
Keira Knightley: Back then anyway, everyone smoked. We’d all run off to smoke, then spray ourselves with everything to cover the smell.
Keira Knightley: But at the party he came to, he walked right into the middle of it wearing a gas mask!
Rosamund Pike: Because he knew everybody…
Keira Knightley: Because he knew! He said, “I want you all to be able to smoke, and I wanted to come to the party.” So we were all smoking, and there he was in a gas mask!
Olenka Sayko retweeted
If we’re at the point in the history of medicine & society where ME and all PAISs were well accepted, recognized and their biomedical research programs well funded and we had specialized clinical care and ppl were promptly diagnosed, we’d not be dissenting and raging against this
Save your spot at the global premiere of Unbound, a dance film created by twenty people living with #MECFS, #LongCovid, and other disabilities.
July 29 at 6:30 PM ET
REGISTER FOR FREE:
ow.ly/Chbb50ZqULE
#UnboundFilm #DisabilityCulture #LongCovid #MECFS
Olenka Sayko retweeted
Nuance on this study. The viral persistence wouldn’t need to be located in the brain to cause central neurological symptoms.
Peripheral mast cells are the main driver of neurological symptoms in mastocytosis, not mast cells in the brain. Mediators released peripherally enter the brain.
Peripheral virus could easily create a similar situation. So this study doesn’t prove against viral persistence as a whole, just evidence against persistence specifically in the brain.
Saying that though, I don’t necessarily think everything will be viral persistence, I think it’s possible you could just have sustained immune dysfunction after. May be subgroup based.
Olenka Sayko retweeted
Big milestone: For the first time, EU Horizon is funding ME/CFS research! 🔬🇪🇺
Huge kudos to the advocates who made this call happen and to everyone involved in DISCOVER-ME 👏
1) 🇪🇺 It's now official: the EU has awarded € 7.5 million for ME/CFS research!
The DISCOVER-ME consortium is led by Prof Eva Untersmayr at the University of Vienna, but includes partners from multiple European countries.
A brief thread...
#MECFS
Olenka Sayko retweeted
Call for retraction of the @WIRED article on mind-body interventions for Long Covid:
virology.ws/2026/06/29/trial…
Olenka Sayko retweeted
NEW ARTICLE from me in @FAIRmediawatch:
"The Media Won't Stop Psychologizing Long Covid."
An overview of this unfortunate propaganda trend in the media since 2020, including where it comes from and what it gets wrong.
Link in next post.
ALT Headline from Fairness and Accuracy in Reporting: June 25,2026, Media Won't Stop Psychologizing Long Covid." by Justine Barron. Image of a Covid virus inside of a brain with someone attached to all of these hanging strings.
Olenka Sayko retweeted
Ein kurzes Update in Sachen Newsletter:
Wir haben inzwischen etwas mehr als 300 Newsletter-Anmeldungen. Vielen Dank an alle, die sich bereits eingetragen haben!
Unser Ziel sind 1.000 Anmeldungen bis Ende August. Das bedeutet, dass uns noch etwa 700 fehlen. Ich wäre jedem sehr dankbar, der den Newsletter abonniert!
Außerdem planen wir die Einführung eines WE&ME Blogs auf unserer Website (im Herbst/Winter). Dort sollen Patientinnen, Angehörige, Wissenschaftlerinnen und Ärztinnen zu Wort kommen. Der Blog wird zT in den Newsletter integriert werden.
Es gab auch vereinzelt technische Probleme bei der Newsletter-Anmeldung. Ich kenne die Details nicht, aber soweit ich weiß sollten diese inzwischen behoben sein.
Falls ihr euch noch nicht angemeldet habt, würde ich mich sehr freuen, wenn ihr das nachholt. 💙
🚨 NEUER NEWSLETTER!
Meine Schwägerin Caroline Ströck (@CarolineStroeck) steckt unglaublich viel Energie komplett ehrenamtlich und in ihrer Freizeit in den gesamten WE&ME Online-Auftritt.
Jetzt hat sie zusätzlich auch noch einen Newsletter gestartet, und ich würde mich sehr freuen, wenn wir dafür möglichst viele Anmeldungen schaffen.
Der Newsletter erscheint nur quartalsweise, eventuell ergänzt durch 1–2 zusätzliche Fundraising-Updates pro Jahr. Also definitiv kein Spam.
Bis zu meinem Geburtstag am 21. August hätte ich einen großen Wunsch:
dass wir gemeinsam 1000 Newsletter-Anmeldungen erreichen.
Ich wäre wirklich jedem dankbar, der sich anmeldet oder den Newsletter weiterempfiehlt.
Link in comments! 🙏💙
Olenka Sayko retweeted
🚨 Major news for ME/CFS research:
WE&ME has launched a new research call worth over €1 million in total funding, supporting around 7 biomedical ME/CFS projects.
What makes this especially notable, alongside the substantial funding volume from a foundation in a small country, is the degree of patient involvement. Members of the Science for ME (@s4me_info) community were heavily involved in shaping the call and will also play a major role in the review and jury process, helping guide funding decisions themselves. At the same time, the process includes internationally respected ME/CFS experts whose judgment and expertise I trust deeply.
I may be wrong, but this could be one of the most patient-driven biomedical ME/CFS research funding calls of this scale to date.
A huge thank you to everyone involved: the patients, patient advocates, researchers, WE&ME, the WWTF team around Benjamin Missbach, and all partners who helped make this possible.
Most importantly, thank you to everyone who fundraised for or donated to WE&ME. This is where your money is going: directly into new biomedical ME/CFS research.
Please share as much as possible! 🙏
📢 New funding opportunity in ME/CFS research.
The WE&ME FOUNDATION has launched its first independent Call for Proposals to support research on the biological mechanisms of ME/CFS.
Applications will be evaluated by an independent international expert jury.
More information: weandmecfs.org/weme-projects…
