We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together.
The guide focuses on 24 medications, but includes a few other interventions for breadth /1
@cureid.bsky.social featured on latest Freakonomics Radio podcast. H/t @idepiheather.bsky.social
Are thousands of medical cures hiding in plain sight?
#LongCOVID
freakonomics.com/podcast/are-...
I read this over the past few days. It (somehow enjoyably) captures so much of life with chronic illness. And, as the reviewer writes: "It’s also about grief, loss, pain, loneliness and the healing power of love. It’s sad but not depressing, loving but not maudlin, philosophical but not pompous."
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).
Tuning into the HHS 'Invisible Illness: Leading the Way on Long COVID Roundtable'
Featuring:
RFK Jr.
FDA Commissioner Makary
NIH Director Bhattacharya
Sen. Roger Marshall (R-KS)
Sen. Todd Young (R-IN)
Rep. Jack Bergman (R-MI)
+ 'Patients, providers, researchers..'
Here goes nothing....
😬 😬 😬
I share your concern, but I’ve also become very confident in Sen Young’s grasp of the issue. Here’s a reminder… thehill.com/opinion/cong...
Oh, so they're telling #NIH staff what they can do and where they can go in their free time, again. Guessing this is illegal, but by the time they prove it, the conference will have passed.
The conference should make all materials publicly available afterwards.
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.
Many thanks for the H/T!
"Senator Todd Young (R-IN) Questions Sec. Kennedy on Long COVID, September 4, 2025"
H/T @yogafogie.bsky.social
www.youtube.com/watch?v=t8pb...
Mount Sinai’s new manual for the treatment of infection-associated chronic diseases is an important step: not a cure-all, sure, but an important instance of a medical institution taking IACD seriously—including Lyme & TBDs—and introducing frameworks for care. Thx @putrinolab.bsky.social & CORE!
Valuable:
"I live with neurocognitive effects from Lyme disease and Covid, which can result in headaches and limit my screen time. ChatGPT helped me conserve energy for higher-order thinking and writing. It didn’t diminish my sense of agency; it restored it."
#LongCOVID #MECFS
For people in the DMV, I think tickets are still available for tomorrow's free concert with renowned cellist Joshua Roman for the #LongCOVID community.
The Immunity project is a performance and advocacy initiative grounded in his experience with Long COVID.
Excellent article appearing in today's @washingtonpost.com on navigating life with #hiddendisabilities.
#LongCOVID #MECFS
wapo.st/44OdrdX
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
The CDC Data Project shows the impact of the proposed FY26 budget: how lost grants affect each state, that (despite promises) chronic disease funding would be cut more than any other program. We're looking at a cash grab rather than attempts at greater 'efficiency'. 🧪
www.cdcdataproject.org
Noteworthy and insightful op-ed from former NSF and OSTP Director Neal Lane in the @washingtonpost.com .
"We urge Congress ... to awaken to what has been happening .... The future of U.S. science, technology, economic well-being and national security depends on it."
wapo.st/3T5wHNz
A new #LongCovid clinical trial is enrolling for bezisterim, an investigational anti-inflammatory drug that crosses the blood-brain barrier.
It has been studied in neurological & neurodegenerative disorders, including Alzheimer’s & Parkinson’s. 1/
Wonderful essay in a new Substack by Allison O’Donnell. Please check it out. #LongCOVID
“People living with Long COVID remind us that we cannot go back and we must not forget. We can only go forward.”
open.substack.com/pub/inneruni...
@richardsima.bsky.social Thanks for excellent article on #LongCOVID clinical trials.
wapo.st/4mjcjpx
Fierce Biotech: 'RFK budget hearing takeaways'
'Sen. Bill Cassidy, R-LA, chair of the committee..asked if HHS would continue to support long COVID research..'
"Senator, I am 100% committed to finding treatments for long COVID..."
www.fiercehealthcare.com/regulatory/d...
During the Senate Health, Education, Labor, and Pensions (HELP) Committee hearing with Health Secretary Robert F. Kennedy Jr. today, Kennedy testified that he is "100% committed to finding treatments for Long COVID."
The Sick Times will continue to follow the story.
RFK Jr says he “is 100% committed to finding treatments for Long COVID” & that his son is dramatically affected by LC.
From today's Senate HELP hearing on HHS budget. @hhsgov.govmirrors.com Secretary Kennedy commits to finding treatments for #LongCOVID. This was the VERY FIRST question asked! #MECFS
youtu.be/qgBz9JfmuyE?...
Today @thesicktimes.bsky.social: @mileswgriffis.bsky.social covers this year's #MillionsMissing demonstration, with photos by DC-based photographer Robb Hill.
thesicktimes.org/2025/05/12/m...
#MillionsMissing starting soon!
#LongCOVID #MECFS
Great slide from @health.nationalacademies.org -- from new report on #Lyme. The framework would apply equally well to #LongCOVID. Key point: prioritize treatments that alleviate symptoms!
"...the very nature of Long COVID and other infection-associated chronic conditions (IACCs) – complex, multi-system conditions that present themselves in myriad ways – testifies to the need for a research enterprise of tremendous breadth and depth."
www.appropriations.senate.gov/hearings/bio...
@patientled.bsky.social joined other research organizations to provide statements for today's Senate Appropriations hearing, Biomedical Research: Keeping America’s Edge in Innovation.
patientresearchcovid19.com/storage/2025...
