iiinova — where your digital self keeps evolving

Reposted by Rivka Solomon

Solve M.E. @solveme.bsky.social · 28/02/2026

📢 New webinar! Dr. Liisa Selin, Dr. Ayano Kohlgruber, & Dr. Roshan Kumar will discuss "The Discovery of Target Antigens for Dysfunctional T Cells in #MECFS and #LongCOVID." WHEN: Tuesday, April 28 @ 3:00 pm PT / 6:00 pm ET. Register here: ow.ly/VnlJ50YmLTQ

Solve M.E. webinar announcement for April 28 on discovering target antigens for dysfunctional T cells in ME/CFS and Long COVID with four expert speakers.

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Reposted by Rivka Solomon

Solve M.E. @solveme.bsky.social · 24/02/2026

🚨 New Catalyst Awards! Solve is funding two groundbreaking studies to advance urgently needed treatment and diagnostic research for #MECFS and #Long Covid. Read more here: ow.ly/rlfQ50Yl4yN

Collage highlighting Solve ME/CFS Catalyst Awards honorees with portraits and their research topics on ME/CFS and Long Covid.

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Jason Gale @jasongale.bsky.social · 02/03/2026

Do you have #LongCovid and feel like you have to consciously control your breathing? An NIH researcher studying this wants to connect with patients. Free link to my story: tinyurl.com/a8e8v4xv Email me confidentially: j.gale@bloomberg.net

tinyurl.com

How Covid Quietly Rewires the Brain

Researchers keep discovering more about the long-term neurological effects of SARS-CoV-2.

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Tom Kindlon @tomkindlon.bsky.social · 24/02/2026

RECOVER-TLC seeks input on planned study of possible Long COVID treatment [stellate ganglion nerve block (SGB)] recovercovid.org/news/recover... #LongCovid #SGB

RECOVER-TLC seeks input on planned study of possible Long COVID treatment

Announcement
February 23, 2026 1 min read
Members of the public will have two weeks to provide feedback on a clinical trial testing the safety and effectiveness of a medical procedure that could help people experiencing a range of Long COVID symptoms.

RECOVER-Treating Long COVID (RECOVER-TLC) invites patients, caregivers, advocates, healthcare providers, and researchers to provide feedback on its upcoming stellate ganglion nerve block (SGB) clinical trial.

RECOVER-TLC wants to collect feedback on this planned clinical trial in the form of public comments on the draft SGB Protocol Synopsis. This draft protocol synopsis (brief summary) contains information about the questions the study will investigate, how researchers will look for answers, and who can join the study. The draft SGB Protocol Synopsis and comment submission form will be made available on the RECOVER-TLC Collaborator Portal on February 23 and will remain accessible for 2 weeks, closing on March 8 at 11:59 pm ET.

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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 18/09/2025

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).

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Julia Métraux @juliametraux.bsky.social · 17/09/2025

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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Reposted by Rivka Solomon

Tom Kindlon @tomkindlon.bsky.social · 02/08/2025

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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Ninni @katfat2.bsky.social · 14/07/2025

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/...

pnas.org

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...

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Reposted by Rivka Solomon

#MEAction Network @meactnet.bsky.social · 10/07/2025

#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...

meaction.net

Severe ME Artists Project 2025

Learn more about this year’s project

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Reposted by Rivka Solomon

#MEAction Network @meactnet.bsky.social · 08/07/2025

#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

events.jhu.edu

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

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Reposted by Rivka Solomon

Dr. Lucky Tran @luckytran.com · 08/07/2025

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 · 06/07/2025

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

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Reposted by Rivka Solomon

David Weil @profsheenalives.bsky.social · 05/07/2025

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...

nytimes.com

Opinion | The Civil War That Never Ended

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Kathleen Bachynski @bachynski.bsky.social · 05/07/2025

“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”

nytimes.com

Opinion | The Civil War That Never Ended

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Reposted by Rivka Solomon

Patient-Led Research Collaborative @patientled.bsky.social · 24/06/2025

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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Rivka Solomon @rivkabluesky.bsky.social · 16/05/2025

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...

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Reposted by Rivka Solomon

Matt Lazell-Fairman @mfairma.bsky.social · 12/05/2025

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

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#MEAction Network @meactnet.bsky.social · 12/05/2025

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

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Reposted by Rivka Solomon

#MEAction Network @meactnet.bsky.social · 09/05/2025

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...

youtube.com

Wilhelmina shares why she joins with the #MillionsMissing this May 12th. #DisabilitySOS #pwME

YouTube video by The ME Action Network

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#MEAction Network @meactnet.bsky.social · 10/05/2025

"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...

youtube.com

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

YouTube video by The ME Action Network

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Rivka Solomon @rivkabluesky.bsky.social · 10/05/2025

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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#MEAction Network @meactnet.bsky.social · 07/05/2025

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.

Ben HsuBorger (white man with short dark hair & beard wearing an N95 mask and glasses and dark shirt) sits on a train with window behind him.

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Reposted by Rivka Solomon

Wilhelmina Jenkins @wilhelminaj.bsky.social · 05/05/2025

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

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Reposted by Rivka Solomon

Solve M.E. @solveme.bsky.social · 01/05/2025

🎥 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

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Reposted by Rivka Solomon

Megan Fitzgerald @themegascope.bsky.social · 29/04/2025

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

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Solve M.E. @solveme.bsky.social · 17/04/2025

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

Graphic advertising a Solve M.E. webinar on April 29th @ 3 pm PT / 6 pm ET. Depicts 5 headshots of Prof. Dept. of Pathology, University of Mass. Chan Medical School, Roshan Kumar, PhD, Executive Director, Head of External Innovation, HiFiBiO Therapeutics, Megan L. Fitzgerald, PhD (Neuroscience/Neurology), Researcher & Patient Rep, Rivka Solomon, MS, Patient Advocate & Patient Rep.

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Rivka Solomon @rivkabluesky.bsky.social · 24/04/2025

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...

solvecfs.org

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...

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Rivka Solomon @rivkabluesky.bsky.social · 05/04/2025

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

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Isabella Cueto @isabellacueto.bsky.social · 19/03/2025

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...

statnews.com

ME/CFS research program shuts down at Columbia after Trump cuts

ME/CFS, which affects millions of Americans, has few dedicated research centers. Now the one at Columbia has been shut down over Trump funding cuts.

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Jeremy Berg @jeremymberg.bsky.social · 24/02/2025

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!

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#MEAction Network @meactnet.bsky.social · 21/02/2025

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...

meaction.net

#MEAction’s Medical Flashcards Featured by CDC!

#MEAction is excited to announce that the Anki Flashcards we created about ME/CFS and infection-associated diseases have been recommended by CDC on its new ME/CFS page for medical students! Anki flash...

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Ninni @katfat2.bsky.social · 06/02/2025

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

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Billy Hanlon @bhanlon15.bsky.social · 06/02/2025

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...

biocentury.com

Call to action: Defending the NIH, the NSF and the foundation of American science — a Guest Commentary

Whether you consider yourself a patient advocate, investor, innovator, health provider or payer of healthcare services, now is the time to stand up for the...

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Reposted by Rivka Solomon

Darby Saxbe @darbysaxbe.bsky.social · 06/02/2025

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

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Rivka Solomon @rivkabluesky.bsky.social · 06/02/2025

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

evaluationen-thu.limequery.com

Survey on the suffering of fragrance-sensitive people

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Bateman Horne Center @batemanhornecenter.bsky.social · 05/02/2025

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

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Rivka Solomon @rivkabluesky.bsky.social · 05/02/2025

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

youtu.be

Living with Long Covid and being harassed by New York Life Insurance- private disability company

YouTube video by Candace Taylor

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Maggie Boxey Writes @maggieboxey.bsky.social · 21/01/2025

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

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Dan Diamond @ddiamond.bsky.social · 22/01/2025

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.

washingtonpost.com

Trump officials pause health agencies’ communications, citing review

The agencies are charged with making decisions that touch the lives of every American and are the source of crucial information to health-care providers.

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Adam @abrokenbattery.bsky.social · 21/11/2024

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?...

youtu.be

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

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Lucinda Crimson @elsiemagenta.bsky.social · 19/01/2025

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

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Rivka Solomon @rivkabluesky.bsky.social · 14/01/2025

Honored to be interviewed for this piece. Few reporters could pull off the required sensitivity and investigative journalist skills to write this article. Thx Jamie Ducharme @timemagazine.bsky.social Thank u also to the patients & clinicians who shared stories and wisdom time.com/7206080/long...

time.com

Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards

The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.

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