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Rivka Solomon

@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

72 Posts420 Follower83 Folgt
betsy ladyzhets 😷@betsyladyzhets.bsky.social · 11mo ago

Getting ready to watch the livestream; it seems to be starting a few minutes late. I can't promise a full live blog but will do my best to share major updates here (while @mileswgriffis.bsky.social and I also work on our write-up).

betsy ladyzhets 😷@betsyladyzhets.bsky.social · 11mo ago

Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)

Screenshot of text: MEDIA ADVISORY—FOR PLANNING PURPOSES ONLY Livestream: Secretary Kennedy Convenes ‘Leading the Way on Long COVID’ Roundtables WASHINGTON—SEPTEMBER 17, 2025— Health and Human Services Secretary Robert F. Kennedy, Jr. will lead two roundtable discussions to drive actionable steps against Long COVID in the United States — one focused on patient experiences and the other on research. The event underscores the Trump Administration’s commitment to confronting the “invisible illnesses” that affect millions of Americans. WHO: Health and Human Services Secretary Robert F. Kennedy, Jr. FDA Commissioner Dr. Marty Makary NIH Director Dr. Jay Bhattacharya U.S. Senator Roger Marshall (R-KS) U.S. Senator Todd Young (R-IN) Congressman Jack Bergman (R-MI) Additional patients, providers, medical professionals, and others researching, treating, and who have been affected by Long COVID. WHEN: Thursday, September 18 at 2 pm ET WHERE: The event is not open to the public but press and the public are invited to watch the event livestream on HHS.gov, X, YouTube, and Facebook.
Ninni @katfat2.bsky.social · last yr.

The study's out--results from a large patient survey on symptoms and treatment efficacy for ME/cfs and Long COVID. Spoiler alert! "Notably, there is significant overlap in the symptom profiles and treatment responses between ME/CFS and long COVID." (As we all knew.) www.pnas.org/doi/10.1073/...

Patient-reported treatment outcomes in ME/CFS and long COVID | PNAS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no kn...

pnas.org

Dr. Lucky Tran@luckytran.com · last yr.

BREAKING: Scientists are staging a “science fair” in the lobby of a Congressional building to tell elected officials about the critical knowledge the US will lose because their research grants have been canceled.

Rivka Solomon@rivkabluesky.bsky.social · last yr.

Dear @barackobama.bsky.social: You did a great job with the Bayard Rustin biopic on Netflix. Please consider focusing your next @netflix.com series on Senator Sumner, based on the stellar biography by @ztameez.bsky.social

Godzillionaire@godzillionaire.bsky.social · last yr.

Wonderfully insightful interview from @jamellebouie.net with @ztameez.bsky.social about his new biography of Charles Sumner. Immediately jumped to the top of my TBR list. A mostly forgotten figure who deserves a closer look w so many parallels and lessons for today: 🎁 link

#MEAction Network@meactnet.bsky.social · last yr.

"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...

Join Jess and the #MillionsMissing as we show up on DC and online May12th! #DisabilitySOS #Medicaid

YouTube video by The ME Action Network

youtube.com

Rivka Solomon@rivkabluesky.bsky.social · last yr.

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!

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Wilhelmina Jenkins@wilhelminaj.bsky.social · last yr.

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

#MEAction Network@meactnet.bsky.social · last yr.

We are fighting for funding for the ME/CFS Research Roadmap. We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap. Sign our new letter now: bit.ly/MEcfsRoadmap The more signatures we gather, the louder our call for action. #PwME #MECFS #NIH

NIH building in the background in black and white with a yellowed/faded overlay. Text: SOS Fund the ME/CFS Roadmap.
Rivka Solomon@rivkabluesky.bsky.social · last yr.

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...

Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID - Solve ME/CFS Initiative

Selin Lab and HiFiBiO Therapeutics are studying dysregulated immune cells of ME/CFS and Long COVID patients. Their research goals include: gaining insights into the underlying immune mechanisms of the...

solvecfs.org