News from the USA, United States of America

From The Sick Times:

UNC shuts down Long COVID clinic, leaving thousands without specialized care
The Sick Times said:
Before it closed last week, the University of North Carolina’s clinic was a leading site for Long COVID care in the U.S. South.
...

The closure of the UNC COVID Recovery Clinic, the only one of its kind in North Carolina, illustrates the fragility of Long COVID care in the U.S. According to Long COVID statistics from the Census Bureau’s Household Pulse Survey, as of September 2024, approximately 6.2% of the people living in North Carolina were experiencing Long COVID, as well as 4.6% in South Carolina and 4.8% in Virginia.

Since its launch in 2021, the UNC clinic has seen more than 3,500 patients from over 20 states. Many of them faced serious consequences from the disease, according to unpublished data from the clinic, shared with The Sick Times. In a survey reporting how Long COVID had impacted them, 43% of patients said they stopped working, 33% went into debt, and 53% had difficulty with activities of daily living. Now patients are losing access not only to specialized care, but also critical services and resources.

This news comes at a time when other Long COVID clinics and services are closing in the U.S., across Canada, and in the U.K. It also follows the federal government’s shuttering of the Office of Long COVID Research and Practice and the erasure of important Long COVID data. The Trump administration and Republicans in Congress are also threatening funding for Medicaid, which could impact healthcare for millions.

“The clinic closing sends me into a panic,” said Lizars. “I think to myself, ‘Oh my God, no help is coming.’”
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6/30, A Chat with Uma: From Foster Care to Harvard Neuroscientist: "The Choice to Live, Maternal Psychedelics & Post-Viral Chronic Illnesses with Dr. Ya’el Courtney“

"Covid was a horrible thing..but it drew public attention and scientific attention to post-viral conditions that affect the brain..”

““And the reason that was good is because there was this resurgence of interest in not only long Covid, but again, this idea of what happens when people get sick and don't get better. And resurgence of interest for a while at least translated to resurgence of funding, which meant that more labs started to ask these questions.”

“I'm particularly studying it from this idea that maybe it's because an autoimmune disease gets triggered.Others are studying it from other angles, but that's the angle that I'm taking. And so I'm studying this in long Covid. I'm studying this in post-treatment Lyme disease, and I have the freedom and flexibility in my lab to get actually samples from patients with other diseases that might be similar.There's another woman who's leading a small group on ME/CFS in my lab, so that's really her territory and really, really important work as well.”
 
Terminated NIH grants are being reinstated almost entirely in blue states

Posted in STAT+ (paywall) so I was not able to read it all but maybe someone out there can find a link without a paywall.

Background: The term "blue state" means a state where the majority of elected officials are from the Democratic party vs. the Republican party.

Here's a comment from a user who posted this link:

"It's not that Trump officials feel more lenient toward blue-state scientists. It's that blue-state Attorneys General fight back in court. Sometimes resistance works."
 
Trump's second presidency begins: evaluating effects on the US health system
Science Direct said:
The first hundred days of the second Trump administration was unprecedented, with the administration taking remarkably aggressive, often questionably legal actions across health policy. This article uses the Health Systems Performance Assessment Framework to identify key policies regarding resources, financing, governance, and service delivery and their impact on the cost, quality, access, and equity of the US health system. The evaluation is largely negative. The administration, in its very energetic first hundred days, has already undermined resources, financing, and in particular governance in areas as diverse as oversight of long-term care, scientific research, and vaccination policy. Administration rhetoric and budget proposals called for severe reductions in health care access and actions to terminate services for particular groups, such as immigrants or gender minorities. Many of the particular actions, such as mass layoffs of specialist scientific and regulatory staff, will be difficult to reverse.
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“Computerized behavioral therapy device for the
treatment of fibromyalgia symptoms”

Source: U.S. Federal Register
Vol. 90, #134, pp 32352-33261
Date: July 16, 2025
URL:
https://www.federalregister.gov/doc...es-under-the-physician-fee-schedule-and-other

https://www.govinfo.gov/content/pkg/FR-2025-07-16/pdf/2025-13271.pdf


[A Proposed Rule by the Centers for Medicare & Medicaid Services]

Medicare and Medicaid Programs; CY 2026 Payment Policies Under the
Physician Fee
Schedule and Other Changes to Part B Payment and Coverage Policies;
Medicare
Shared Savings Program Requirements; and Medicare Prescription Drug
Inflation
Rebate Program
--------------------------------------------------------------------------------
This document has a comment period that ends in 57 days. (09/12/2025).

Summary

This major proposed rule addresses: changes to the physician fee
schedule (PFS); other changes to Medicare Part B payment policies to
ensure that payment systems are updated to reflect changes in medical
practice, relative value of services, and changes in the statute;
codification of establishment of new policies for: the Medicare
Prescription Drug Inflation Rebate Program under the Inflation Reduction
Act of 2022; the Ambulatory Specialty Model; updates to the Medicare
Diabetes Prevention Program expanded model; updates to drugs and
biological products paid under Part B; Medicare Shared Savings Program
requirements; updates to the Quality Payment Program; updates to
policies for Rural Health Clinics and Federally Qualified Health Centers
update to the Ambulance Fee Schedule regulations; codification of the
Inflation Reduction Act and Consolidated Appropriations Act, 2023
provisions; updates to the Medicare Promoting Interoperability Program.

(...)

I. Policies To Improve Care for Chronic Illness and Behavioral Health
Needs

1. Updates to Payment for Digital Mental Health Treatment (DMHT) and
Comment Solicitation on Payment Policy for Software as a Service (SaaS)

a. Updates to Payment for DMHT

(...)

Additionally, we welcome comments on whether we should establish coding
and payment policies for devices classified under the following FDA
regulation sections that were recommended to us by interested parties:
Computerized behavioral therapy devices for treating symptoms of
gastrointestinal conditions at paragraph 876.5960; Digital therapy
devices to reduce sleep disturbance for psychiatric conditions at
paragraph 882.5705; and Computerized behavioral therapy device for the
treatment of fibromyalgia symptoms to be codified at paragraph 882.5804.

(...)

BILLING CODE 4120-01-P
BILLING CODE 4120-01-C
[FR Doc. 2025-13271 Filed 7-14-25; 4:15 pm]
BILLING CODE 4210-01-P
 
7/22/25, NIH: 'Mitochondria and health’

Excerpt:

Viral Damage

Infections may also affect how mitochondria function. Many researchers now think that mitochondrial damage from viruses holds clues to some medical conditions that have long vexed scientists.

One such condition, called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), has been a medical mystery for decades. It’s called a post-viral syndrome—a condition that develops and persists after the body has seemingly eliminated an infection. ME/CFS is a complex medical problem that likely has different causes in different people, explains Dr. Paul Hwang, a mitochondrial researcher at NIH.

People with ME/CFS often experience debilitating exhaustion, exercise intolerance, cognitive problems, and a worsening of symptoms after even mild exertion (known as post-exertional malaise). Because the condition’s main symptom is chronic fatigue (a lack of energy), researchers have wondered if mitochondrial dysfunction may help drive the condition in some people.

In 2023, an NIH research team including Hwang linked a protein called WASF3 to ME/CFS in one woman. WASF3 is boosted in cells by stress signals from a signaling pathway called the ER stress response pathway. This overproduction disrupts mitochondrial energy production.

When Hwang and his colleagues compared muscle tissue samples taken from 14 additional people with ME/CFS to samples from 10 healthy volunteers, they found substantially higher levels of WASF3 in most of the people with ME/CFS.

In experiments using cells, blocking WASF3 allowed mitochondria to produce energy at normal levels. The researchers are now planning a clinical trial using an FDA-approved drug repurposed to tamp down ER stress.

“We’re hoping that if we can block WASF3 overproduction, then we have a chance of improving mitochondrial functioning, and hopefully improve symptoms,” Hwang explains.

This tactic may help with other post-viral syndromes, Hwang added, including Long COVID. Millions of people in the U.S. currently live with Long COVID, defined as symptoms lasting at least 3 months after an initial infection with SARS-CoV-2, the virus that causes COVID-19. Many of its symptoms—including fatigue, post-exertional malaise, and “brain fog”—are similar to those of ME/CFS.

“We have some evidence that WASF3 may be increased in some Long COVID patients as well,” Hwang says. “So, if we see positive results from our trial in people with ME/CFS, we’d naturally consider trying this in Long COVID.”

SARS-CoV-2 may affect the mitochondria in other ways. A recent NIH-funded study found that the virus can block mitochondrial energy production during infection. This interference shifts cells into a state where they produce more of the substances the virus needs to copy itself. In some people, the mitochondria in organs such as the heart, kidney, liver, and lymph nodes never recovered, even though the body had cleared the virus.

Finding ways to block this mitochondrial damage during infection may be a way to reduce the severity of disease as well as prevent Long COVID from developing."
 
"Expanding the rheumatology lens: should we embrace POTS and post-infectious syndromes?"
Like many of my colleagues who care for patients with dysautonomia, chronic fatigue syndrome, and
infection-associated chronic illness, I stumbled into this work seemingly by accident. As a rheumatology
fellow, I was trained to ask sharp, targeted questions to diagnose rheumatic diseases. When patients did not fit a recognisable pattern—when their symptoms, laboratory results, and exam findings did not add up—I would explain, often unhelpfully, that they did not have a rheumatological illness, and send them on their way.

That changed one day in fellows’ clinic in 2017.
...
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In summary, infection-associated chronic illness, POTS, chronic fatigue syndrome, and autonomic dysfunction are rising in prevalence, and rheumatologists are seeing these patients every day. Yet most have received little to no training in how to recognise or manage them. It is time to expand the rheumatology lens and embrace education and research in this area. We can sharpen our diagnostic skills, reduce misdiagnoses, and improve care for a growing population whose needs have long been unmet
Click to expand...
Written by a rheumatologist at Johns Hopkins.

https://www.sciencedirect.com/science/article/pii/S2665991325001900 (Lancet Rheumatology, July 2025)
 
Cell Reports Medicine: 'Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome'

By Anthony L. Komaroff & Robert Dantzer

'Many similar underlying biological abnormalities have been identified in both conditions including autoantibodies against neural targets, endothelial dysfunction, acquired mitochondrial dysfunction, and a pro-inflammatory gut microbiome. Each of these abnormalities may directly cause some of the symptoms. In addition, the symptoms also may be caused by ancient, evolutionarily conserved symptomatic and metabolic responses to vital threats—sickness behavior and torpor—responses mediated by specific, recently discovered neural circuits. These neural circuits constitute a symptom-generating pathway, activated by neuroinflammation, which may be targeted by therapeutics to quell neuroinflammation.’

'We propose another target for therapy: the neuroinflammation that activates the neural circuits that may generate sickness symptoms—including fatigue, brain fog, and pain. Targeting neuroinflammation may reduce many of the symptoms of these illnesses, at least in a substantial fraction of people. However, experience suggests that traditional anti-inflammatory drugs are unlikely to be effective and that new therapies will be required.’
 
SNT Gatchaman said:
He lasted three months.

Science Based Medicine: COVID-19 contrarian Dr. Vinay Prasad meets real world responsibility

BioSpace.com: Prasad Out at CBER Following Sarepta Rollercoaster and Conservative Criticism
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simpsons-monkey-fight-meme-template-full-bcf420d0.webp
 
Mass General: 'Drug for celiac disease shows promise in treating severe post-COVID syndrome in children’

'A small, randomized clinical trial led by Mass General Brigham investigators found the oral drug larazotide—an experimental drug originally designed to treat celiac disease—was both safe and effective in treating children with MIS-C.'

'Their results are published in Science Translational Medicine.’

"While our study is small, its results are powerful and have implications not only for MIS-C, but potentially for long COVID," said lead author Lael Yonker, MD, co-director of the Cystic Fibrosis Center, Cystic Fibrosis Therapeutic Development Center, and Pulmonary Genetics Clinic at Mass General Brigham for Children.

"Our findings suggest that larazotide is safe and quickly resolves symptoms in children with MIS-C. We are now running a clinical trial to test whether larazotide may also be a useful therapy to treat patients with long COVID.”
 
Sharing from Twitter



#NotJustFatigue: "Big win in the Senate! After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap—and is now directing NIH to create a detailed implementation plan. This is a major step forward in the fight for treatments, diagnostics, and answers. The Senate language comes straight from our advocacy and @MEActNet, and shows that your voice is being heard. The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We’ll be fighting to keep this language intact."

"The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority."

Here is the FY26 Appropriations Senate LHHS report, if you search Long COVID or ME/CFS in it.
 
www.linkedin.com

We love to see it! | Jaime Seltzer

We love to see it! Not only did the Senate roundly reject cuts to science funding, but #MECFS funding was mentioned explicitly in both #NIH and #CDC appropriations language. This includes funding for the ✨ #MECFS Research Roadmap ✨ which was hard-won. The Roadmap was a longstanding project at...
www.linkedin.com www.linkedin.com

Jaime Seltzer: “We love to see it! Not only did the Senate roundly reject cuts to science funding, but #MECFS funding was mentioned explicitly in both #NIH and #CDC appropriations language.This includes funding for the ✨ #MECFS Research Roadmap ✨ which was hard-won.The Roadmap was a longstanding project at NIH within #NINDS, where the world's best #MECFS researchers created a report re: the state of the field, inc. a gap analysis. The effort was monumental, featuring more researchers, clinicians, and people with lived experience than I can name here, including #MEAction Executive Director Laurie Jones: https://lnkd.in/gdg3faRV.

#MEAction fought hard for the Research Roadmap to be funded, launching a petition that netted ✨ thousands of signatures ✨ : https://lnkd.in/gj_AWitc. So many advocates gave of their time and very limited energy to ensure that researchers have access to the funds they need to further #MECFS research.

Now, the Senate Appropriations language is unequivocal: Fund #MECFS.”

#NIH:
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.-The Committee recognizes the urgent need to advance research for #MECFS, especially given its overlap with #LongCOVID... and commends #NIH for approving the ME/CFS Research Roadmap. The Committee encourages #NIH to implement the roadmap's recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. #NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment."

#CDC:
Given that a subset of patients with post-acute COVID–19 and other post-infectious syndromes meet the diagnostic criteria for #MECFS, the Committee continues to encourage CDC to develop a national epidemiological & disease tracking study of post-infectious syndromes prevalence, specifically the rates of ME/CFS in adults. The Committee encourages CDC to strengthen collaboration with (1) interagency partners, (2) disease experts and stakeholders, and (3) the NIH’s Collaborative Research Centers. Additionally, the Committee urges CDC to conduct a series of epidemiological studies into the causes, diagnosis, and risk factors of ME/CFS. The Committee expects CDC to engage physicians and patients in an effort to increase awareness of ME/CFS and disseminate updated clinical guidance. Finally, the Committee supports CDC’s successful Project ECHO-style primary care provider education programs and encourages CDC to explore expanding the program to additional States and regions, with a special focus on rural and underserved communities.

Appropriations language: https://lnkd.in/g57dvWNt
STAT News: https://lnkd.in/g82c7jbx
 
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