News from the USA, United States of America

Sharing an upcoming weekend event in case it’s of interest: ME/CFS Clinic Minnesota is hosting the Rooted in Hope Concert this Sunday, April 26 at the American Swedish Institute in Minneapolis, Minnesota. The charity concert aims to raise awareness of ME, Long COVID and chronic Lyme disease, and to support people in our community facing food insecurity. A silent auction is also included.

It’s in Minneapolis, but there’s a livestream and a recording available for those outside the state, so wanted to share these details here today.

Free tickets (optional donation) and details (livestream link will be sent after sign-up): https://givebutter.com/c/qFCf8j

Date: Sunday, April 26
Time (CT): 1–2 PM social hour, 2–4 PM concert
Where: American Swedish Institute in Minneapolis, Minnesota
 
"Entire NSF science advisory board fired by Trump administration"
Members of the National Science Board, which the US Congress founded in 1950, were given no explanation for their termination.
Click to expand...
All 22 members of the advisory board that advises and oversees the US National Science Foundation (NSF), a leading funder of basic science, were fired on 24 April without explanation. Each member of the NSF’s National Science Board (NSB) received an email Friday afternoon saying that “on behalf of President Donald J. Trump,” their positions were “terminated, effective immediately”.

Members of the NSB are appointed by the president and serve six year terms that are staggered, avoiding complete turnover. The White House did not immediately respond to Nature’s queries about the reason for the terminations or whether members would be replaced.

“This action to dismiss the NSB is unprecedented,” says Dan Reed, a computer scientist at the University of Utah in Salt Lake City and chair of the NSB from 2022–2024. “We need a vibrant, independent NSB, one representative of the broad science and engineering enterprise.”

Zoe Lofgren, a member of the US House of Representatives from California and the ranking Democrat on the House Committee on Science, Space, and Technology, criticized the move. “This is the latest stupid move made by a president who continues to harm science and American innovation,” she said in a statement. “It unfortunately is no surprise a president who has attacked NSF from day one would seek to destroy the board that helps guide the Foundation.” House science committee chairman Brian Babin, a Republican from Texas, did not respond to a request for comment.

This is not the first time the Trump administration has ousted federal science advisors en masse. Last year, the administration fired all 17 members of the Advisory Committee on Immunization Practices, which played a critical part in US vaccine policy, and eliminated 14 advisory committees at the NSF. Also last year, Trump issued an order eliminating several advisory committees, including one on long COVID, to reduce government spending and “promote American freedom and innovation.”
Click to expand...

Edit: Updated to add a link to a story with no paywall (AP News):

apnews.com

Trump administration fires independent board overseeing the National Science Foundation

The Trump administration has fired members of an independent board that oversees the National Science Foundation.
apnews.com apnews.com
 
Last edited:
Dakota15 said:
Sharing an upcoming weekend event in case it’s of interest: ME/CFS Clinic Minnesota is hosting the Rooted in Hope Concert this Sunday, April 26 at the American Swedish Institute in Minneapolis, Minnesota. The charity concert aims to raise awareness of ME, Long COVID and chronic Lyme disease, and to support people in our community facing food insecurity. A silent auction is also included.

It’s in Minneapolis, but there’s a livestream and a recording available for those outside the state, so wanted to share these details here today.

Free tickets (optional donation) and details (livestream link will be sent after sign-up): https://givebutter.com/c/qFCf8j

Date: Sunday, April 26
Time (CT): 1–2 PM social hour, 2–4 PM concert
Where: American Swedish Institute in Minneapolis, Minnesota
Click to expand...
Sharing media coverage from yesterday’s charity concert in Minneapolis. If KSTP publishes their segment, I can pass that along separately, but for now just sharing the one‑minute video posted on X and Bluesky for anyone interested.

On X:

On Bluesky:

 
Last edited:
Sharing for anyone interested in registering or attending, including those outside Minnesota.

Minnesota Dept. of Health: 'Statewide Conversation on Post-Viral Chronic Illness: A Day of Learning, Connection, and Action'

When: Tuesday, June 2, 2026 - 9:00 AM – 2:00 PM CT - Location: Virtual via Zoom (Agenda in link above)

Register here: https://survey.alchemer.com/s3/8790...lness-A-Day-of-Learning-Connection-and-Action

Who Should Attend: This event is open to all, however we would most like to engage:
  • Social and disability service navigators
  • Community Health Workers
  • Community organizations and wraparound service providers
  • Care coordinators and medical social workers
  • Health care providers and leaders
  • Policymakers
  • Employers
  • Patient advocates and caregivers
Please note that much of the content and discussion will be Minnesota-specific.

Participation will:
  • Increase awareness of how post-viral chronic illnesses impact daily life and community wellbeing.
  • Build connections across systems and communities for ongoing collaboration.
  • Support community-driven actions aligned with the MDH Statewide Actions Roadmap recommendations.
 
Last edited:
Thanks for posting, @Dakota15
Dakota15 said:
Sharing for anyone interested in registering or attending, including those outside Minnesota.

Minnesota Dept. of Health: 'Statewide Conversation on Post-Viral Chronic Illness: A Day of Learning, Connection, and Action'

When: Tuesday, June 2, 2026 - 9:00 AM – 2:00 PM CT - Location: Virtual via Zoom (Agenda in link above)
Click to expand...

Strangely, the link to the announcement is not working now (registration link works). But here's a link with a "save the date" blurb for the event:

Long COVID: What We Are Doing to Learn More - MN Dept. of Health

www.health.mn.gov www.health.mn.gov
 
Last edited:
Last edited:
A joke about CFS on the Daily Show with Jon Stewart in a segment on the hantavirus. Which I think is first time ME/CFS is mentioned there?

The joke is that the hantavirus will not kill us, but "it is important to note, this virus CAN cause chronic fatigue syndrome, mostly among the experts who have to repeatedly answer the same questions".

Link to The Daily Show on Bluesky with clip:
Click to expand...
 
.
"For Jon Stewart & Co (hanging on long after their peak), any type of engagement is a net positive. It's not unlikely he and his writers (and producers) noticed the traction they have within the ME/CFS community...and decided to ragebait in order to boost engagement."

'Zedrisil' @sunsweptforest on Twitter




.
 
Lou B Lou said:
.
"For Jon Stewart & Co (hanging on long after their peak), any type of engagement is a net positive. It's not unlikely he and his writers (and producers) noticed the traction they have within the ME/CFS community...and decided to ragebait in order to boost engagement."

'Zedrisil' @sunsweptforest on Twitter




.
Click to expand...

Yes perhaps. It might simply be a sign that ME is finally arriving into the vision field of the general society in USA, and that comedians are picking up on that.
 
"Millions of Americans live with infection-associated chronic conditions and illnesses, including long COVID, ME/CFS, and Lyme disease–associated chronic symptoms; conditions that are often debilitating, misunderstood, and under-recognized.

In a new Clinical Infectious Diseases viewpoint, CAPT Iskander and Dr. Haridopolos of the Office of the U.S. Surgeon General call for making these “invisible illnesses” visible through patient-centered care, stronger surveillance, multidisciplinary management, and continued research investment.

The article emphasizes the importance of validating patients’ lived experiences while advancing evidence-informed care to improve outcomes for people living with these complex chronic conditions."



Making Invisible Illnesses Visible: Recognizing and Responding to Infection-Associated Chronic Conditions
 
From The Sick Times on Instagram:

Call for Interviews:
Trans Long Haulers & Hormone Replacement Therapy (HRT)

We are looking to interview trans Long Haulers who are currently on HRT or have paused HRT due to resulting symptom burden and inflammatory immune response.

Preferance is for BIPOC sources, but anyone is welcome to be interviewed.

This story will assess impacts to HRT access as growing COVID-19 related disability disproportionately impacts trans communities-featuring narrative
throughlines to the AIDS epidemic.

We would like to conduct filmed, in- person, and masked interviews in the Chicago area for any trans Long Hauler that fits the previous slide's criteria.

Otherwise, anyone in the US can be interviewed either on-record, meaning name will be cited in piece, or on background, meaning zero quotes or voice will be used in-story.

If you are interested in either an in-person or virtual interview, please contact Khalil Dennis at khalildennis37@gmail.com or leave a comment expressing interest!

Thank you for your support, and please share with people whose stories
may be best included and amplified.
Click to expand...
 
My experience is that a fair number of people in this world seem to misunderstand and hence fear and reject science, broadly speaking.

It is not a huge number, but it is not insignificant, and they are typically inconsistent about it and quite happy to take the goodies science offers.

But we are now seeing what happens when those kinds of people are in charge of a major science producing country.
 
shak8 said:
I'm always a bit afraid to read "News from the USA."

I read the article. The constraints are ridiculous. This turns our science back to the dark ages, which seems to be the agenda here. I signed up for Science newsletter and will follow your posts regularly
Chandelier, and thank you.
Click to expand...
It's pretty clear that no serious researcher in any field should be seeking funding from the United States or any institution housed within it. At this point, collaboration with any researcher(s) based in the United States is also risky and probably to be avoided.
 
Minnesota Dept. of Health has published its Statewide Roadmap to Address Long COVID and Post‑Viral Chronic Conditions today.

It’s a 136‑page effort — deep gratitude to all contributors (searching for ME/CFS indicates 86 mentions)

Will leave shortcut to document here.

Site page from MDH here.

(this site is listed and linked on Page 86, as: Science for ME – Where science and the ME/CFS community meet - under Resource recommendations from the ME/CFS community)

Hopefully just the first state of many more ahead with mapping out a way forward
 
Last edited:
shak8 said:
I'm always a bit afraid to read "News from the USA."
Click to expand...
I‘m afraid we haven’t reach the bottom of the barrel yet:

www.scientificamerican.com

White House proposes new rules giving political appointees final say on research grants

These proposed Office of Management and Budget regulations would render the federal research grant review process opaque
www.scientificamerican.com www.scientificamerican.com

White House proposes new rules giving political appointees final approval on research grants​

These proposed Office of Management and Budget regulations would render the federal research grant review process opaque
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom