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rivkabluesky.bsky.social
• Advocate/Organizer: Immune-Associated and Infection-Associated Chronic Illnesses, ME/CFS, Long COVID, Lyme, disability and women • Writer: Washington Post, Marie Claire magazine, NPR, Ms. magazine, Newsweek • Playwright: Dozens of productions
56 posts 371 followers 69 following
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Thx, @cortjohnson.bsky.social, for writing about the groundbreaking researchers Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. I am lucky to get to work w/ them. “Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID” www.healthrising.org/blog/2025/05...

submitted 2 days ago • 2 comments

Today is May 12th ME Awareness Day. This is my view most days. I’d like for it not to be my view forever, but even more I want for my friends in sickness not to lose the supports they need to survive. #DisabilitySOS #MEAwarenessDay #MECFS #LongCovid

submitted 6 days ago • 1 comment

We miss our co-founder Beth Mazur. We have lost too many and that loss is carved into our souls. We are honored to carry them with us. Board member & her brother, Steve Mazur, shared his SOS for #MillionsMissing. "I am here for my sister and sending out an SOS for ME." millionsmissing.org

submitted 6 days ago • 2 comments

Most of our community are not well enough to protest on the street but we are making our voices heard from our beds about why cuts to ME/CFS research funding is so devastating to our community. Wilhelmina Jenkins is one of the #MillionsMissing showing up from home! youtube.com/shorts/ypEHp...

submitted 9 days ago • 3 comments

"I feel like so many of us feel like we're drowning right now and are holding high a torch of hope and also to call out for an SOS." Jess shares the artwork she created for #MillionsMissing and will be headed to DC with it on May 12th. www.meactions.org/millionsmiss... youtube.com/shorts/tolpX...

submitted 8 days ago • 2 comments

It’s almost May 12, almost #millionsmissing What’s that? Millions of people r missing. Missing fr work, fr school, fr their families, fr their own lives. Where r they? Home, sick; struggling; some r homeless. Some can’t care for themselves. They r hoping tomorrow’s better. Help us get there!

submitted 7 days ago • 12 comments

Sending our best to Ben HsuBorger, Terri Wilder #MEAction MN state lead, & other #MECFS #LongCovid advocates heading to Minnesota state capitol tomorrow. House budget is proposing eliminating ALL appropriations for Long COVID grants & health dept staffing! SOS moment for #MillionsMissing in MN.

submitted 11 days ago • 2 comments

The ME/CFS Research Roadmap was a major achievement. NIH pulled in researchers, clinicians and advocates to set the course for ME/CFS for the foreseeable future. Now we are sitting by the side of the road, Roadmap in hand, with no resources. Please sign this letter calling for $50 million in funding

submitted 12 days ago • 0 comments

🎥 The recording of "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID," w/panelists from Selin Lab, HiFiBio & patient reps @rivkabluesky.bsky.social & @themegascope.bsky.social, is online now. Watch here: youtu.be/2DQZp48fyek

submitted 17 days ago • 0 comments

I'll be joining the Selin and Kumar labs today at 3 pm PT/6 pm ET for a webinar on their research called "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID" Register here to attend: ow.ly/4Spj50VumTk

submitted 19 days ago • 1 comment

Register for our April 29 (3 pm PT/6 pm ET) webinar "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID," w/ Liisa Selin, PhD (Selin Lab), Roshan Kumar (HiFiBio), Megan Fitzgerald, PhD, & Rivka Solomon, M.S. Sign up: ow.ly/4Spj50VumTk

submitted 31 days ago • 0 comments

Join me! Tues, April 29 (6pm ET) to hear about immune dysfunction & single cell profiling in ME & Long Covid. Research is being conducted by 2 collaborating labs — Liisa Selin Lab at UMass Chan Med School & HiFiBiO Therapeutics. I’m a Patient Rep & Advisor w/ these labs. solvecfs.org/event/invest...

submitted 24 days ago • 1 comment

Thx to journalist Rachel Fairbanks for this excellent review @sweetsciencewriter.bsky.social

submitted 43 days ago • 1 comment

NEW: Cuts to Columbia University funding have shuttered a prominent research center into ME/CFS, a debilitating condition with no FDA-approved treatments. It's a gut punch to a community that for years has been frustrated by a lack of funding. Developing... www.statnews.com/2025/03/19/m...

submitted 60 days ago • 12 comments

STAT story on the hearing about indirect costs held in Boston www.statnews.com/2025/02/21/t...

submitted 83 days ago • 1 comment

IMPORTANT Collecting data to understand and strengthen arguments about the impact of the administration's ill-considered actions and the responses of universities... Please share!

submitted 83 days ago • 3 comments

WBUR story up www.wbur.org/news/2025/02...

submitted 83 days ago • 1 comment

Two medical education wins to share! The Anki Flashcards we created about ME/CFS & infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! We have upcoming Reddit live Q & A on Feb. 24! H/T to #MEAction GA! Article: meaction.net/2025/02/20/m...

submitted 85 days ago • 1 comment

Stink-sensitive folks for whom perfume is doom, make your opinion smell, or at least count.

submitted 100 days ago • 0 comments

BioCentury: “Call to action: Defending the NIH, the NSF and the foundation of American science — a Guest Commentary” ‘There is an assault on the foundation of U.S. science: Silence is not an option’ www.biocentury.com/article/6549...

submitted 101 days ago • 0 comments

ASK: Anyone skilled at video content creation on platforms like TikTok? Colleagues who teach undergrads are saying they have NO IDEA about the admin's attacks on science & research. Many get their news from TikTok. We could post 'explainer' vids about banned keywords & effects on science agencies

submitted 101 days ago • 16 comments

📣 Links to archived versions of every FDAgov website page available pre-purge: acasignups.net/25/02/06/lin...

submitted 101 days ago • 10 comments

International survey on the suffering of fragrance-sensitive people. The anonymous online survey is only available until Feb. 28, 2025. Share with social media and with fragrance-sensitive people. evaluationen-thu.limequery.com/689193?lang=en

submitted 100 days ago • 0 comments

Q: What’s the connection between COVID-19 & ME/CFS? A: Certain infections raise the risk of ME/CFS. Evidence shows SARS-CoV-2 (the virus behind COVID-19) increases that risk 5-fold. Raising awareness is key! 💙 #MECFS #LongCOVID #ChronicIllness #Awareness #BatemanHorneCenter

submitted 102 days ago • 0 comments

My friend with #LongCovid feels she is being harassed by her private long-term disability company. This makes me so sad sad and mad. I knew people with ME decades ago who also were harassed. And now it’s continuing with Long Covid. youtu.be/8P1QfyVwKcc

submitted 102 days ago • 0 comments

Red light therapy (aka photobiomodulation) appears to be a good treatment for acute COVID. pmc.ncbi.nlm.nih.gov/articles/PMC...

submitted 109 days ago • 0 comments

Im so excited to be taking the TEDx stage on February 2 in Ojai! There are still tickets & sponsorship opportunities available. Please repost and tag friends who might enjoy this opportunity. www.tedxojai.com #ojai #ventura #losangeles #santabarbara #santapaula #oxnard

submitted 116 days ago • 1 comment

New: Trump officials have paused all external communications at health agencies like CDC, FDA, NIH. No health alerts and the famed MMWRs; no updates to key websites or social media posts. And no indication how long the pause will last. With @rachelroubein.bsky.social + Lena Sun.

submitted 116 days ago • 502 comments

Cochrane tells ME/CFS patients that they can go fuck themselves: virology.ws/2024/12/17/t...

submitted 151 days ago • 4 comments

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment. youtu.be/RiwX9Y0NbiQ?...

submitted 178 days ago • 48 comments

Is ME/CFS the only illness where you can feel like you’re dying every day (for weeks, months, years) but there’s no point in seeing a Dr because even if they have heard of the illness they can’t do anything to help? #ME/CFS

submitted 119 days ago • 12 comments