News from the USA, United States of America

Chandelier said:
www.scientificamerican.com

America’s compact between science and politics is broken, and we’re all going to pay

How did we get here?
www.scientificamerican.com www.scientificamerican.com
Article de 3500 mots. Trop dense pour moi pour le moment.
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Conclusion of the article :

"[Gregg] Gonsalves [epidemiologist and policy teacher at Yale University], who was involved in the fight to care for people with HIV and AIDS in the 1980s, says that scientists now have another job: “bearing witness and putting evidence on the table. It may not be persuasive to Russell Vought or Marco Rubio, but it is for the dossier, for the truth and reconciliation commission, for the Nuremberg trials that come after,” he says. “Keep the receipts. Write down what you see. Tell them what they did. We’re very good at documenting how X leads to Y.” "
 
Attached is the Summary of Presentations, Conversations, and Key Takeaways from June 2nd's Statewide Conversation on Post-Viral Infection Associated Chronic Conditions (IACCs): A Day of Learning, Connection, and Action with Minnesota Dept. of Health

"It includes key highlights and themes of Opening Remarks, Opening Keynote, the two panels (Living with Infection-Associated Chronic Conditions [IACCs] and Caring for People with IACCs) and breakout discussions on how we keep the momentum going to act on Roadmap recommendations."

Event recording: 'Statewide Conversation on Post-Viral Infection-Associated Chronic Conditions (IACCs)'
 

Attachments

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Another article about the proposed OMB rule and its impact on science:

‘The purpose of the rule is fascism’: scientists fight back against planned Trump research cuts
www.theguardian.com

‘The purpose of the rule is fascism’: scientists fight back against planned Trump research cuts

Stand Up for Science founder says proposal to control how grants are spent would ‘dismantle US science ecosystem’
www.theguardian.com www.theguardian.com
The Guardian said:
The rule, proposed by OMB director Russ Vought on 29 May, would place all research and other federal grants under the control of political appointees, rather than scientific or subject-matter experts.
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“The rule also requires that discretionary awards must ‘… demonstrably advance the president’s policy priorities,’” she added.

In other words, said Delawalla, it would create a “$1.5tn slush fund” under Trump’s control. “The purpose of the rule is fascism,” she told the Guardian.
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I hope any forum member who lives in the USA (and who is able to do so) will submit a public comment opposing the OMB rule.

Solve ME has a web page with instructions and a template:
solvecfs.org

How to Submit a Public Comment on the Proposed Federal Grant Rule - Solve ME/CFS Initiative

Use our guide to make your voice heard!
solvecfs.org solvecfs.org

They also list reasons why it's important to do this even if the rule doesn't change now. Deadline is Saturday, July 13.
 

A look at the science that's been lost on long COVID​

JUNE 22, 20264:50 PM ET

Every year, the government recruits some of the brightest experts and advocates in their fields to work in a largely volunteer program advising federal agencies on science and research. But the Trump administration has dismissed hundreds of these experts from their committees. NPR's Katia Riddle looked closely at the science that has been lost on one urgent issue.
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RIDDLE: Across federal agencies, more than 100 of these advisory committees have been terminated. The administration has not said if or when many of them, including the long COVID committee, will return. Katia Riddle, NPR News.
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www.biospace.com

BIO 2026: US public health as we know it is gone. Can we rebuild a better system?

Former FDA, CDC and NIH leaders convene at the BIO International Convention to discuss the dismantling of the Department of Health and Human Services under the Trump administration—and where we go from here.
www.biospace.com www.biospace.com

BIO 2026: US public health as we know it is gone. Can we rebuild a better system?​


Podium attendees:
Julie Tierney, former deputy director of the FDA’s Center for Biologics Evaluation and Research (CBER);
Ian Simon, former lead of HHS’ Office of Long Covid;
Demetre Daskalakis, former director of the CDC’s National Center for Immunization and Respiratory Diseases;
Jennifer Eileen Towne, chief scientific officer at Vir Biotechnology;
Jared Bauer, CEO and cofounder of Seek Labs.
Jef Akst

Former FDA, CDC and NIH leaders convene at the BIO International Convention to discuss the dismantling of the Department of Health and Human Services under the Trump administration—and where we go from here.

When the Department of Government Efficiency—nicknamed DOGE—started slashing jobs at the U.S. health department early last year, it was under the guise of a massive restructuring project.
But Demetre Daskalakis, director of the CDC’s National Center for Immunization and Respiratory Diseases until October 2025, has a different view.

“When you think about a reorganization, you think about re-imagining a structure so it’s better fit to function,” Daskalakis, now chief medical officer at Callen-Lorde, said at a Monday panel during the BIO International Convention in San Diego.
“This feels more like someone is deleting parts of an organization without thought. It’s moth-eaten, for lack of a better term.”

He gave the specific example of a branch within his CDC center that had the word equity in its name.
“They actually had almost nothing to do with health equity,” he explained, but the division was wiped out nonetheless.
“Certain things were deleted based on a search or certain terms, and then they just went away.”
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When panel moderator Julie Tierney, former deputy director of the FDA’s Center for Biologics Evaluation and Research (CBER) under well-respected regulator Peter Marks, asked if the situation is recoverable, Daskalakis answered flatly: “No.”

But he and his fellow panelists maintained an optimistic tone.
The U.S. may have transitioned from a golden age to a dark age in public health, but “the end of a dark age is always a renaissance,” Daskalakis remarked.
“No one ever tries to go fix the Acropolis. . . . They try to build the Sistine Chapel.”


Jared Bauer, CEO and cofounder of Seek Labs, lauded the analogy, agreeing that “one of the things that happens when you tear down everything is you do have an opportunity to build something different.”
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The staff cuts and leadership turnover at HHS are problematic in obvious ways—such as a lack of experience with outbreak responses—and more subtle ways, said panelist Ian Simon, former lead of HHS’ Office of Long Covid, which was shut down last year.

“I saw firsthand during the COVID response when omicron first emerged in South Africa, the scientists in South Africa contacted NIH leadership almost immediately, days before they contacted their own ministry, because they had a decades-long trusted relationship with NIH leadership,” said Simon, now director of Biosecurity Policy and Partnerships at Flyttr.
“It saved us days to a week . . . and it was built on this informal layer of information sharing that you lose when you ask senior leaders to go find a different line of work.”
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Op-ed in The Capital Times (Madison, WI) written by Christopher J. Ford, MD, FACEP, emergency medicine physician, public health advocate and community leader based in Milwaukee.

Assuming poor title choice was picked by the editor, but mentions NIH ME Research Roadmap, his view as an emergency medicine physician, profound impact to WI residents, underinvestment by federal government, and urgency to address.

Link to Op-ed here.

Excerpt: "I have watched patients leave my emergency room with symptoms I can't fully explain and conditions I cannot treat. I have referred patients into a specialty care system with no standard of care for their disease. ME/CFS and long COVID have cost Wisconsin families enough — in income, in savings, in careers, in years spent waiting for answers.The NIH has a plan. Wisconsin's patients have waited long enough. It is time for our congressional leaders to take urgent action and fund it."
 
Dakota15 said:
Op-ed in The Capital Times (Madison, WI) written by Christopher J. Ford, MD, FACEP, emergency medicine physician, public health advocate and community leader based in Milwaukee.

Assuming poor title choice was picked by the editor, but mentions NIH ME Research Roadmap, his view as an emergency medicine physician, profound impact to WI residents, underinvestment by federal government, and urgency to address.

Link to Op-ed here.

Excerpt: "I have watched patients leave my emergency room with symptoms I can't fully explain and conditions I cannot treat. I have referred patients into a specialty care system with no standard of care for their disease. ME/CFS and long COVID have cost Wisconsin families enough — in income, in savings, in careers, in years spent waiting for answers.The NIH has a plan. Wisconsin's patients have waited long enough. It is time for our congressional leaders to take urgent action and fund it."
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I sent an email to ask to change the title.
 
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