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Michael Sieverts

@yogafogie.bsky.social
1.3K followers 310 following 146 posts

DMV native. COVID long hauler. Patient-Led Research Collaborative.

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Reposted by Michael Sieverts
Long COVID Campaign | www.longcovidcampaign.org @lccampaign.bsky.social · 16/04/2026
📣U.S. Action Item: #pwLC #POTS #pwME #NEISVoid we need your help! Will you contact your Senators & ask them to sign on to the FY27 Senate “Dear Colleague” Letter for over $210 million to #FundLongCOVID in 2027 Appropriations using our EASY low-spoons call/email tool?🧵
Drawn image of the U.S. Capitol dome, with the words underneath: Long COVID patients have waited too long for TESTS, TRIALS & TREATMENTS. #FundLongCOVID
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Michael Sieverts @yogafogie.bsky.social · 14/04/2026
Kudos to @lccampaign.bsky.social for bringing the patient voice!
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Reposted by Michael Sieverts
Alexa Philippou @alexaphilippou.bsky.social · 13/04/2026
Breaking: Restricted free agent Shakira Austin is returning to the Washington Mystics on a three-year deal, sources told ESPN. Austin, the AP Comeback POY, signed an offer sheet with the Toronto Tempo worth $3.57M, but Washington matched it to retain one of its young stars
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Michael Sieverts @yogafogie.bsky.social · 11/04/2026
@geoffrbennett.bsky.social Really enjoyed your book. Here's the review I posted on @everand-us.bsky.social
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Michael Sieverts @yogafogie.bsky.social · 14/03/2026
For #LongCovid Awareness Day, @patientled.bsky.social has released the 2026 Long Covid Fact Sheet! This is a list of key statistics about LC, using recent data to reflect contemporary risks. #LongCOVID patientresearchcovid19.com/2026-long-co...
patientresearchcovid19.com
2026 Long COVID Fact Sheet – Patient Led Research Collaborative
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Reposted by Michael Sieverts
Patient-Led Research Collaborative @patientled.bsky.social · 11/03/2026
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
rthm.com
Long COVID Treatment Guide
An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...
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Michael Sieverts @yogafogie.bsky.social · 20/02/2026
@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-...
freakonomics.com
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Michael Sieverts @yogafogie.bsky.social · 25/12/2025
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."
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Reposted by Michael Sieverts
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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Reposted by Michael Sieverts
Billy Hanlon @bhanlon15.bsky.social · 18/09/2025
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.... 😬 😬 😬
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Reposted by Michael Sieverts
It's ME(Jaime) @exceedhergrasp1.bsky.social · 17/09/2025
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.
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Reposted by Michael Sieverts
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 Michael Sieverts
Billy Hanlon @bhanlon15.bsky.social · 04/09/2025
"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...
youtube.com
Senator Young Questions Sec. Kennedy on Long COVID, September 4, 2025
YouTube video by Michael Sieverts
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Reposted by Michael Sieverts
Meghan O'Rourke @meghanor.bsky.social · 21/08/2025
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!
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Michael Sieverts @yogafogie.bsky.social · 20/07/2025
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
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Michael Sieverts @yogafogie.bsky.social · 18/07/2025
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.
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Michael Sieverts @yogafogie.bsky.social · 07/07/2025
Excellent article appearing in today's @washingtonpost.com on navigating life with #hiddendisabilities. #LongCOVID #MECFS wapo.st/44OdrdX
wapo.st
Guest column | I have an invisible disability. Getting travel accommodations is tough.
There are ways to get support and make travel easier, experts said.
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Reposted by Michael Sieverts
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-2025list of researchers presenting, including on T cell responses, foraminal stenosis in ME/CFS patients, and morelist of researchers presenting, including on microclots, PEM pathophysiology, clinical trial results, and more
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Reposted by Michael Sieverts
It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/06/2025
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
cdcdataproject.org
The CDC Data Project
In the proposed FY26 budget, programs that help Americans live safer, healthier, longer lives are on the chopping block.
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Michael Sieverts @yogafogie.bsky.social · 22/06/2025
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
wapo.st
Opinion | Trump is undermining U.S. science. Here’s why that’s dangerous.
Science has played a crucial role in making the United States great and powerful.
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Reposted by Michael Sieverts
Patient-Led Research Collaborative @patientled.bsky.social · 20/06/2025
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/
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Michael Sieverts @yogafogie.bsky.social · 18/06/2025
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...
open.substack.com
A Love Letter to Long COVID
and a plea for collective grieving
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Michael Sieverts @yogafogie.bsky.social · 16/05/2025
@richardsima.bsky.social Thanks for excellent article on #LongCOVID clinical trials. wapo.st/4mjcjpx
wapo.st
Long covid patients are desperate for treatments. These trials may help.
Some trials are focusing on drugs that target the immune system, which is affected by different pathways to long covid.
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Reposted by Michael Sieverts
Billy Hanlon @bhanlon15.bsky.social · 15/05/2025
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...
fiercehealthcare.com
RFK budget hearing takeaways: Kennedy defends reorg, unaware of $11B grant terminations
Updated: May 14 at 5:20 p.m. ET | Secretary Robert F. Kennedy Jr. is defending the Trump administration's actions in reshaping the HHS. Industry pushback and fear are plaguing national healthcare orga...
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Reposted by Michael Sieverts
The Sick Times @thesicktimes.org · 14/05/2025
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.
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Michael Sieverts @yogafogie.bsky.social · 14/05/2025
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?...
youtu.be
May 14, 2025
YouTube video by Michael Sieverts
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 12/05/2025
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...
thesicktimes.org
“Millions Missing” protest at the Capitol demands myalgic encephalomyelitis funding, social support - The Sick Times
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction...
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Michael Sieverts @yogafogie.bsky.social · 12/05/2025
#MillionsMissing starting soon! #LongCOVID #MECFS
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Michael Sieverts @yogafogie.bsky.social · 09/05/2025
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!
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Michael Sieverts @yogafogie.bsky.social · 30/04/2025
@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...
patientresearchcovid19.com
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Reposted by Michael Sieverts
STAT @statnews.com · 30/04/2025
#Breaking: GOP Senator Collins says Trump’s layoffs of scientists, cuts to biomedical research ‘must be reversed’
buff.ly
GOP Senator Collins says Trump’s layoffs of scientists, cuts to biomedical research ‘must be reversed’
Trump's canceled NIH grants and HHS layoffs threaten U.S. biomedical leadership, Collins says, as she calls for funding to be restored.
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Michael Sieverts @yogafogie.bsky.social · 30/04/2025
@lccampaign.bsky.social thanks for great post on very important issue. #LongCOVID x.com/LCCampaign/s...
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Michael Sieverts @yogafogie.bsky.social · 19/04/2025
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...
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Alt CDC (they/them) @altcdc.altgov.info · 18/04/2025
🏥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
An image of all agency and program eliminations proposed for HHS. Reach out to altCDC for an accessible version or filterable PDF. The alt-text box does not fit all the text contained.
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Reposted by Michael Sieverts
Patient-Led Research Collaborative @patientled.bsky.social · 17/04/2025
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/
banner with pastel colors that says "Patient-Led Research Collaborative 5th anniversary - you can sustain long covid patient-led work when it's needed most!" with a link to bit.ly/plrc-donate
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Lena Sun @lenasun.bsky.social · 16/04/2025
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/...
washingtonpost.com
Internal budget document reveals extent of Trump’s proposed health cuts
HHS would be asked to absorb a $40 billion cut, about one third of its discretionary budget.
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Reposted by Michael Sieverts
Hypervisible @hypervisible.blacksky.app · 04/04/2025
The company was co-founded by a long Covid patient, and the wearable is designed to help people with energy-limiting conditions.
nytimes.com
Most Wearables Prompt You to Move More. This One Helps You Avoid Overdoing It.
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Julia Métraux @juliametraux.bsky.social · 03/04/2025
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.
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Patient-Led Research Collaborative @patientled.bsky.social · 03/04/2025
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...
salon.com
Trump abandons long COVID and ME/CFS patients again
Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS
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Tom Kindlon @tomkindlon.bsky.social · 02/04/2025
🧵 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/
Salon logo
Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again
Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS
By Elizabeth Hlavinka
Staff Writer
Published April 1, 2025 5:30AM (EDT)
Updated April 1, 2025 12:55PM (EDT)
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Michael Sieverts @yogafogie.bsky.social · 01/04/2025
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.
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The Sick Times @thesicktimes.org · 28/03/2025
🚨 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
 Long COVID advocates in matching teal shirts pose for a photo at the Senate Committee on Health, Education, Labor & Pensions hearing on Long COVID. The text reads, “The Sick Times. UPDATE: RECOVER Long COVID pathobiology grants restored. By Betsy Ladyzhets and Miles Griffis.” Long COVID advocates stepped up to contact their representatives and advocate for RECOVER funding and other federal Long COVID initiatives to remain in place. While the research program’s broader future remains uncertain, these restored grants are a significant milestone, said RECOVER patient representative Megan Fitzgerald.
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#MEAction Network @meactnet.bsky.social · 29/03/2025
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."
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Michael Sieverts @yogafogie.bsky.social · 27/03/2025
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.
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Meghan O'Rourke @meghanor.bsky.social · 16/03/2025
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...
nytimes.com
Opinion | The View Inside Trump’s Assault on Universities
The Trump administration’s attacks on universities will lead to the permanent diminishment of vital American institutions.
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Chantzy @chantzy.bsky.social · 15/03/2025
Thank you @rollingstone.com for the front page coverage Make the invisible visible. Long Covid is REAL and a growing crisis
Rolling stone front page - caption: five years of pain, fatigue, and gaslighting: life with long covid 

Pictured: activists in respirators protesting with signs in front of White House
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Living Safely With Covid @covidsafenz.bsky.social · 15/03/2025
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
rollingstone.com
Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid
People with Long Covid are still sick from a pandemic the rest of the world would rather forget.
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Michael Sieverts @yogafogie.bsky.social · 13/03/2025
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
wapo.st
Opinion | The free-living bureaucrat
Michael Lewis on Heather Stone of the Food and Drug Administration.
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Michael Sieverts @yogafogie.bsky.social · 10/03/2025
@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...
nytimes.com
Covid’s Long-Term Effects on the Lungs, Gut, Brain and More (Gift Article)
Five years on, scientists are starting to understand how the virus can lead to long-term, sometimes invisible changes.
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Michael Sieverts @yogafogie.bsky.social · 08/03/2025
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...
npr.org
Scientists are making progress in better understanding Long COVID
Scientists have made progress in understanding Long COVID over the last five years. Patient advocates hope that research will continue under the Trump administration.
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