Rivka Solomon

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).

Thank you, dear friend. 💝

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

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.

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.

Yes, he was a hero too many

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

Solve ME/CFS Initiative Summer 2025 Chronicle

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

#LongCovid #MEcfs

Thank you for these important details

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

@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.

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...

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/...

Severe ME Artists Project 2025 Learn more about this year’s project

#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...

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

#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

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.

Will it be available virtually?

Ask yr publicist send him a copy of yr book

Just bought yr book.

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

@davidaxellrod.bsky.social

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

@barackobama.bsky.social

@barackobama.bsky.social

Opinion | The Civil War That Never Ended

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...

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.

Opinion | The Civil War That Never Ended

“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”

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

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

Great! Thank you!

I'm running the Boston Waterfront 5K to raise money for #MassME an organization that supports those with #MEcfs #LongCovid #Fibromyalgia. No donation is too small. fundraisers.hakuapp.com/andrea-joliat

Selin Lab Selin Lab, UMass Chan Medical School. Conducting cutting-edge research focused on understanding human adaptive immune responses and T cell responses in multiple neuroinflammatory and infection-associa...

And even more, I hope everyone will check out the Selin Lab website (link here: www.umassmed.edu/selinlab/) so they can learn more about our work, and then… yes, then DONATE! Your donations allow this dedicated team of researchers to continue with their important work. Let’s find some answers!

YouTube video by SolveME Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID

I hope everyone also watches the
SolveME webinar of April 29, 2025, to hear more from Liisa Selin MD, PhD, Anna Gil PhD & Roshan Kumar PhD. You also hear from both me & Megan Fitzgerald, the 2 Patient Reps on this exciting research project. The webinar is here: www.youtube.com/watch?v=2DQZ...

Finding the Key? Could Unraveling T-cell Exhaustion Solve ME/CFS and Long COVID - Health Rising Researchers assessing T-cell exhaustion in ME/CFS and long COVID could ultimately identify what caused these diseases.

www.healthrising.org/blog/2025/05...