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Rivka Solomon

@rivkabluesky.bsky.social

400 followers 78 following 72 posts

• 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

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Reposted by Rivka Solomon

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 20d

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 · 21d

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.

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Rivka Solomon @rivkabluesky.bsky.social · 21d

Thank you, dear friend. 💝

Rivka Solomon @rivkabluesky.bsky.social · 21d

That’s so kind. Thank YOU for all YOU do.

Reposted by Rivka Solomon

Julia Métraux @juliametraux.bsky.social · 21d

RFK Jr is holding a panel on Long Covid the day before Covid vaccines are discussed at ACIP. I wonder if he's going to claim that Covid vaccines cause Long Covid.

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.

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Rivka Solomon @rivkabluesky.bsky.social · Aug 17

Yes, he was a hero too many

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Reposted by Rivka Solomon

Tom Kindlon @tomkindlon.bsky.social · Aug 2

Solve ME/CFS Initiative Summer 2025 Chronicle

solvecfs.org/wp-content/u...

#LongCovid #MEcfs

Contents

How COVID and Long Covid Damage
Lung Tissues, and a Drug to Reverse
This Damage. . . . . . . . . . . . . . . . . . . . . . . . . 2

A Genetic Risk Score for ME/CFS. . . . . . 2

Solve M.E.’s Guide to Current
Clinical Trials. . . . . . . . . . . . . . . . . . . . . . . . . 2

Endogenous Retrovirus Activation
in ME/CFS, Fibromyalgia, and a Newly
Discovered, Related Disease. . . . . . . . . . 3

Updating the Long Covid Research
Index — Results from the RECOVERAdult Study. . . . . . . . . . . . . . . . . . . . . . . . . . 3

A Simple Hearing Test to Measure
Cognitive Decline in People
with Long Covid. . . . . . . . . . . . . . . . . . . . . . 4

Chronic Inflammation Raises IL-6
to Drive Neurobehavioral Symptoms
via Dopamine Disruption. . . . . . . . . . . . . . 4

Register for Solve’s ADDRESS-LC Trial
Webinar. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

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Rivka Solomon @rivkabluesky.bsky.social · Jul 19

Thank you for these important details

Rivka Solomon @rivkabluesky.bsky.social · Jul 18

Have you thought of approaching Ken Burns, the documentary filmmaker?

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Rivka Solomon @rivkabluesky.bsky.social · Jul 18

@ztameez.bsk.social, yr fantastic interviews & book r important today, given our current political climate. Question: Did Sumner defended himself or fight back during the canning assault? How long did the assault go on? Did any witnesses try to intervene? I see u as a young Robert Caro. High praise.

Reposted by Rivka Solomon

Ninni @katfat2.bsky.social · Jul 14

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...

www.pnas.org

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Reposted by Rivka Solomon

#MEAction Network @meactnet.bsky.social · Jul 10

#MEAction is proud to bring you our Severe ME Artists Project 2025 that will feature work from those within the severe ME community and will be in recognition of Severe ME Day on August 8th! We have all the details here and we are happy to help you submit your work: www.meaction.net/2025/07/10/s...

Severe ME Artists Project 2025

Learn more about this year’s project

www.meaction.net

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Reposted by Rivka Solomon

#MEAction Network @meactnet.bsky.social · Jul 8

#MedEd event -FREE CME/CNE credits for a virtual facilitated discussion on #MECFS -TOMORROW! events.jhu.edu/form/me-cfs

When: July 9th at 12p EST
Where: Zoom
Who: Johns Hopkins, Stanford & Karina (#pwME)
What: Overview of patience experience & current research

#MedTwitter #pwME

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): An Overview of Symptoms and Current Research | Johns Hopkins Events

events.jhu.edu

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Reposted by Rivka Solomon

Dr. Lucky Tran @luckytran.com · Jul 8

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.

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Rivka Solomon @rivkabluesky.bsky.social · Jul 7

Will it be available virtually?

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

Ask yr publicist send him a copy of yr book

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

Just bought yr book.

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

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 · Jul 5

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

Opinion | The Civil War That Never Ended

www.nytimes.com

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Rivka Solomon @rivkabluesky.bsky.social · Jul 6

@davidaxellrod.bsky.social

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

I don’t have a relationship. But someone here must

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

@barackobama.bsky.social

Rivka Solomon @rivkabluesky.bsky.social · Jul 6

@barackobama.bsky.social

Reposted by Rivka Solomon

David Weil @profsheenalives.bsky.social · Jul 5

An inspirational and essential July 4th interview by @nytimes.com great @jamellebouie.net of @ztameez.bsky.social on his new book about Charles Sumner. www.nytimes.com/2025/07/05/o...

Opinion | The Civil War That Never Ended

www.nytimes.com

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Rivka Solomon @rivkabluesky.bsky.social · Jul 6

I think someone should pitch this to Barack Obama who is a producer of Netflix programs. This really has to be turned into a series.

Reposted by Rivka Solomon

Kathleen Bachynski @bachynski.bsky.social · Jul 5

“I knew about Charles Sumner as this U.S. senator who had been caned on the Senate floor as a prominent politician during the Civil War. What I did not know is that more than 100 years before Brown, Charles Sumner tried to integrate the schools of Boston in a case at the Massachusetts Supreme Court”

Opinion | The Civil War That Never Ended

www.nytimes.com

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Reposted by Rivka Solomon

Patient-Led Research Collaborative @patientled.bsky.social · Jun 24

We're hosting a Patient-Led Research Fund (PLRF) webinar on July 9, 1–4:30PM ET!

Hear results from 10 PLRF-funded biomedical studies (on microclots, T cell exhaustion, trials, & more), all selected by a panel of patient-researchers.

🗓️ Register: us02web.zoom.us/webinar/regi...

#LongCOVID

infographic on the PLRF with an address to register at bit.ly/PLRF-2025

list of researchers presenting, including on T cell responses, foraminal stenosis in ME/CFS patients, and more

list of researchers presenting, including on microclots, PEM pathophysiology, clinical trial results, and more

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