Michael Sieverts
@yogafogie.bsky.social
DMV native. COVID long hauler. Patient-Led Research Collaborative.
Reposted by Michael Sieverts
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 Michael Sieverts
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....
😬 😬 😬
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....
😬 😬 😬
September 18, 2025 at 6:10 PM
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....
😬 😬 😬
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....
😬 😬 😬
Reposted by Michael Sieverts
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.
The conference should make all materials publicly available afterwards.
NEW: Per multiple sources, NIH staff have been told that "DOJ has advised" that they "should NOT" attend the American Public Health Association annual meeting, which is taking place in far-off, uh, Washington DC November 2-5.
September 17, 2025 at 10:44 PM
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.
The conference should make all materials publicly available afterwards.
Reposted by Michael Sieverts
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 Michael Sieverts
"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...
H/T @yogafogie.bsky.social
www.youtube.com/watch?v=t8pb...
Senator Young Questions Sec. Kennedy on Long COVID, September 4, 2025
YouTube video by Michael Sieverts
www.youtube.com
September 4, 2025 at 5:23 PM
"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...
H/T @yogafogie.bsky.social
www.youtube.com/watch?v=t8pb...
Reposted by Michael Sieverts
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!
August 21, 2025 at 2:09 PM
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
"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
@meghanor.bsky.social article is exceptional, the concerns raised apply just as much to scientific writing.
You can use AI to generate ideas, to summarize, to even write your grants & manuscripts...but, ethics aside, do you miss out on 'the pleasure of invention'?
www.nytimes.com/2025/07/18/o...
You can use AI to generate ideas, to summarize, to even write your grants & manuscripts...but, ethics aside, do you miss out on 'the pleasure of invention'?
www.nytimes.com/2025/07/18/o...
Opinion | The Seductions of A.I. for the Writer’s Mind
www.nytimes.com
July 20, 2025 at 5:11 PM
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
"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.
The Immunity project is a performance and advocacy initiative grounded in his experience with Long COVID.
July 18, 2025 at 7:28 PM
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.
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
#LongCOVID #MECFS
wapo.st/44OdrdX
Guest column | I have an invisible disability. Getting travel accommodations is tough.
There are ways to get support and make travel easier, experts said.
wapo.st
July 7, 2025 at 12:22 PM
Excellent article appearing in today's @washingtonpost.com on navigating life with #hiddendisabilities.
#LongCOVID #MECFS
wapo.st/44OdrdX
#LongCOVID #MECFS
wapo.st/44OdrdX
Reposted by Michael Sieverts
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 Michael Sieverts
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
www.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.
www.cdcdataproject.org
June 23, 2025 at 12:53 PM
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
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
"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
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.
wapo.st
June 22, 2025 at 2:28 PM
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
"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
Reposted by Michael Sieverts
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/
It has been studied in neurological & neurodegenerative disorders, including Alzheimer’s & Parkinson’s. 1/
June 20, 2025 at 7:48 PM
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/
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...
“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...
A Love Letter to Long COVID
and a plea for collective grieving
open.substack.com
June 18, 2025 at 9:06 PM
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...
“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
wapo.st/4mjcjpx
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.
wapo.st
May 16, 2025 at 7:21 PM
@richardsima.bsky.social Thanks for excellent article on #LongCOVID clinical trials.
wapo.st/4mjcjpx
wapo.st/4mjcjpx
Reposted by Michael Sieverts
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...
'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...
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...
www.fiercehealthcare.com
May 15, 2025 at 12:37 PM
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...
'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...
Reposted by Michael Sieverts
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.
The Sick Times will continue to follow the story.
May 14, 2025 at 6:35 PM
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.
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?...
youtu.be/qgBz9JfmuyE?...
May 14, 2025
YouTube video by Michael Sieverts
youtu.be
May 14, 2025 at 6:12 PM
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/qgBz9JfmuyE?...
Reposted by Michael Sieverts
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/2025/05/12/m...
“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...
thesicktimes.org
May 12, 2025 at 9:32 PM
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/2025/05/12/m...
May 12, 2025 at 4:05 PM
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!
May 9, 2025 at 3:33 PM
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...
patientresearchcovid19.com/storage/2025...
patientresearchcovid19.com
April 30, 2025 at 9:41 PM
@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/storage/2025...
Reposted by Michael Sieverts
#Breaking: GOP Senator Collins says Trump’s layoffs of scientists, cuts to biomedical research ‘must be reversed’
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.
buff.ly
April 30, 2025 at 2:41 PM
#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...
x.com/LCCampaign/s...
April 30, 2025 at 3:10 PM
@lccampaign.bsky.social thanks for great post on very important issue. #LongCOVID
x.com/LCCampaign/s...
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...
#SendingoutanSOS
#LongCOVID #MECFS @meactnet.bsky.social
www.meactions.org/millionsmiss...
April 19, 2025 at 6:04 PM
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...
#SendingoutanSOS
#LongCOVID #MECFS @meactnet.bsky.social
www.meactions.org/millionsmiss...