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
• Writer: Washington Post, Marie Claire magazine, NPR, Ms. magazine, Newsweek
• Playwright: Dozens of productions
Reposted by 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).
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!)
September 18, 2025 at 6:05 PM
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).
Reposted by Rivka Solomon
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.
September 17, 2025 at 9:48 PM
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.
Reposted by Rivka Solomon
August 2, 2025 at 8:58 PM
Reposted by Rivka Solomon
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/...
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
July 14, 2025 at 6:36 AM
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/...
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/...
Reposted by Rivka Solomon
#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
July 10, 2025 at 4:56 PM
#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...
Reposted by Rivka Solomon
#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
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
July 8, 2025 at 8:31 PM
#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
When: July 9th at 12p EST
Where: Zoom
Who: Johns Hopkins, Stanford & Karina (#pwME)
What: Overview of patience experience & current research
#MedTwitter #pwME
Reposted by Rivka Solomon
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.
July 8, 2025 at 3:31 PM
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.
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
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
July 6, 2025 at 2:22 AM
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
Reposted by Rivka Solomon
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
July 5, 2025 at 6:58 PM
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...
Reposted by Rivka Solomon
“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
July 5, 2025 at 6:38 PM
“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”
Reposted by Rivka Solomon
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
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
June 24, 2025 at 9:43 PM
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
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
Reposted by Rivka Solomon
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
Boston Waterfront 5K
Please help with my fundraising efforts for the Massachusetts ME/CFS Association! No donation is too small. The Massachusetts ME/CFS and FM Association is a lifeline for people living with myalg...
fundraisers.hakuapp.com
June 2, 2025 at 2:25 PM
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
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...
May 16, 2025 at 12:54 AM
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...
Reposted by Rivka Solomon
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
May 12, 2025 at 2:55 PM
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
Reposted by Rivka Solomon
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
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
May 12, 2025 at 1:24 AM
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
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
Reposted by Rivka Solomon
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...
Wilhelmina Jenkins is one of the #MillionsMissing showing up from home!
youtube.com/shorts/ypEHp...
Wilhelmina shares why she joins with the #MillionsMissing this May 12th. #DisabilitySOS #pwME
YouTube video by The ME Action Network
youtube.com
May 9, 2025 at 6:58 PM
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...
Wilhelmina Jenkins is one of the #MillionsMissing showing up from home!
youtube.com/shorts/ypEHp...
Reposted by Rivka Solomon
"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...
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
May 10, 2025 at 6:51 PM
"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...
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...
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!
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!
May 10, 2025 at 9:15 PM
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!
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!
Reposted by Rivka Solomon
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.
House budget is proposing eliminating ALL appropriations for Long COVID grants & health dept staffing!
SOS moment for #MillionsMissing in MN.
May 7, 2025 at 1:40 AM
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.
House budget is proposing eliminating ALL appropriations for Long COVID grants & health dept staffing!
SOS moment for #MillionsMissing in MN.
Reposted by Rivka Solomon
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
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
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
May 5, 2025 at 8:50 PM
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
Reposted by Rivka Solomon
🎥 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
& @themegascope.bsky.social, is online now.
Watch here: youtu.be/2DQZp48fyek
May 1, 2025 at 4:21 PM
🎥 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
& @themegascope.bsky.social, is online now.
Watch here: youtu.be/2DQZp48fyek
Reposted by Rivka Solomon
Details:
solvecfs.org/event/invest...
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
April 29, 2025 at 4:00 PM
Details:
solvecfs.org/event/invest...
solvecfs.org/event/invest...
Reposted by Rivka Solomon
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
Register here to attend:
ow.ly/4Spj50VumTk
April 29, 2025 at 4:00 PM
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
Register here to attend:
ow.ly/4Spj50VumTk
Reposted by Rivka Solomon
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
Sign up: ow.ly/4Spj50VumTk
April 17, 2025 at 6:44 PM
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
Sign up: ow.ly/4Spj50VumTk
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
April 24, 2025 at 11:38 AM
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...