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.... 😬 😬 😬

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.

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.

"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

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.

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!

@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...

#Breaking: GOP Senator Collins says Trump’s layoffs of scientists, cuts to biomedical research ‘must be reversed’

@lccampaign.bsky.social thanks for great post on very important issue. #LongCOVID x.com/LCCampaign/s...

Don't forget -- order your #MissingMillions gear soon for the May 12 Rallies. My hat arrived today -- It looks great and feels great to wear! #SendingoutanSOS #LongCOVID #MECFS @meactnet.bsky.social www.meactions.org/millionsmiss...

🏥HHS ELIMINATIONS💀 We have created a list of all agency and program eliminations proposed in the HHS 2026 Budget. Feds: Please let us know if you have any clarity to share. The cuts are massive. Reach out if you would like a PDF or xlsx @alt-hhs.altgov.info @altfda.altgov.info

PLRC is 5 years old today!!!! If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most. bit.ly/plrc-donate 1/

SCOOP: Internal budget doc reveals extent of Trump’s proposed health cuts. About 1/3 of HHS discretionary budget. Our story w @carolynyjohnson.bsky.social @rachelroubein.bsky.social @joelachenbach.bsky.social @laurenweberhp.bsky.social www.washingtonpost.com/health/2025/...

The company was co-founded by a long Covid patient, and the wearable is designed to help people with energy-limiting conditions.

I have been waiting on a FOIA from HHS/FDA on lobbying that may be done to try and stop a ban from shocking autistic and other disabled kids. This may stop me from getting the information.

PLRC members @yogafogie.bsky.social & Beth Pollack spoke to Salon about the #LongCovid cuts: "The LC office was starting to have a real impact, getting researchers, patients & policymakers talking.. [&] was right at center of [RECOVER-TLC] coming into being” www.salon.com/2025/04/01/a...

🧵 Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, @exceedhergrasp1.bsky.social): "Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again" www.salon.com/2025/04/01/a... #MEcfs #LongCovid 1/

Very sorry to hear about Jeanne Mazzaro being removed as #NIAID Director. Her engagement with #LongCOVID patients has been highly productive. As @exceedhergrasp1.bsky.social notes, she truly spearheaded RECOVER-TLC.

🚨 BREAKING: #LongCOVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, according to patient representatives in the initiative. bit.ly/3FO8LuQ

Update from @thesicktimes.bsky.social "Long COVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, according to patient representatives in the initiative."

A quote that speaks volumes. Cuts to long COVID research and health care are in some ways baffling. [It] should be “aligned with the MAHA campaign,” because people with chronic diseases are more likely to develop long COVID and because long COVID is itself a chronic illness.

I wrote about the Trump administration's assault on higher education & what's really going on: "If, during the Cold War, the government funded universities as a way of strengthening America, Mr. Trump’s second administration treats them as a threat to be dismantled." www.nytimes.com/2025/03/16/o...

Thank you @rollingstone.com for the front page coverage Make the invisible visible. Long Covid is REAL and a growing crisis

Dr. Elizabeth Yuko: Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid #LongCovidAwareness www.rollingstone.com/culture/cult... @rollingstone.com.web.brid.gy

Esp now we need reminders of the great work that often goes unnoticed in the US govt. Excellent feature from the @washingtonpost.com on @cureid.bsky.social . #LongCOVID #LongCOVIDAwareness2025 wapo.st/3Ft2hBe

@nytimes.com provides a very solid overview of the current scientific understanding of #LongCOVID. Special thanks to @zalaly.bsky.social . #LongCOVIDAwareness2025 www.nytimes.com/2025/03/10/w...

From @npr.org @wstonereports.bsky.social. H/T to @lccampaign.bsky.social on the need for action now. "Scientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration." www.npr.org/2025/03/08/n...

Kudos to @kim.senate.gov for raising #LongCOVID at today's confirmation hearing for @drjbhattacharya.bsky.social as NIH Director. A very productive exchange. youtu.be/GK7aU5AYa1g?...

Thanks #scishow for this great video explaining chronic fatigue syndrome /MECFS, it's post-viral occurrence, and PEM. #ME/CFS #MECFS #Epstein-Barr #longcovid #PEM youtu.be/wxSwYUennBA?...

“The Secretary of Health and Human Services shall terminate the Secretary’s Advisory Committee on Long COVID”

Weird, illogical refusal on their part, since finding out that an existing drug also works for Long COVID would lead to... more of it being bought and used.

PBS survey about Covid below. It can be used as an opportunity to talk about Long Covid if you take a different perspective on the questions.

On changes to #NIH indirect rates, there is a law in place that prohibits NIH from making such changes without the approval of Congress. See Division D, Title II Section 224 of The Further Consolidated Appropriations Act, 2024 (Public Law No: 118-47) grants.nih.gov/grants/guide...

NIH must address the twin crises of long Covid and ME/CFS — together www.statnews.com/2025/02/04/r... via @statnews.com

Sharing a beautiful (and highly relatable) essay from @nytimes.com. Important to read thru the end. #LongCOVID www.nytimes.com/2025/01/31/s...