News from the USA, United States of America

(8 minute video ft. Dr. Janko Nikolich of Univ. of Arizona, RECOVER PI, along with several patient testimonies)

Arizona Illustrated: 'The Long Shadow of COVID'

'Faced with a frustrating array of over 200 potential symptoms, many individuals endure a slow and challenging path to understanding their condition. Yet, amidst this uncertainty, the scientific community is making promising strides towards illuminating the biological mechanisms of this persistent illness, offering a beacon of hope for those yearning for relief and recovery.'

Nikolich: "It is really a national economic issue and a national security issue..these people, not only are not imagining that this is happening, they need help. It is really in the interest of all of us to provide it."
 
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Science: 'What does the new FDA framework mean for the future of COVID-19 vaccines in the U.S.?'

'Will people with Long Covid be able to get boosters?'

'Neither Long Covid, a chronic illness from a COVID-19 infection, nor the related condition myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is included on Makary and Prasad’s list of underlying conditions that increase the risk of severe COVID-19. That means it may be difficult for some Long Covid patients who do want a new booster to receive it based on that diagnosis alone.'

'Still, several conditions listed as part of the new framework’s risk assessment criteria, including mood disorders and “physical inactivity,” frequently appear in people with Long Covid and ME/CFS, so many may still be able to be vaccinated.'

'...Überla says. “We do know that the vaccine protects against Long Covid, but whether the fifth booster makes any difference is unclear,” he says.'
 
KSTP: 'Long COVID patients urged to enroll in U of M clinical trial'

'The University of Minnesota is one of a few colleges participating in the nationwide study “Reverse LC,” to see if the FDA-approved drug Baricitinib'

“I can’t, you know, walk, or drive, or cook, or clean, or go out for dinner. I can barely leave the house because of the fatigue.”

Three other universities, including Vanderbilt University Medical Center, are enrolling or plan to enroll patients soon.

“The trial is specifically enrolling individuals who had neurocognitive deficits develop after they were infected with SARS-CoV-2,” Bramante said.

Her goal is to enroll 135 people and conduct the trial in smaller “batches” over the next couple of years.
 
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5/19/25, Minnesota Department of Health: 'Long COVID and Other Post-viral infection Associated Chronic Conditions: Program Overview'

The Minnesota Public Health Response

'The Minnesota Department of Health (MDH) is leading efforts in Minnesota to convene, coordinate, and build public health, health system, and community capacity to support the more than 375,000 children and adults who have ever or are currently experiencing long COVID and other post-viral infection associated chronic conditions (IACC). Post-viral IACCs are lingering symptoms, particularly severe fatigue, that persist after recovering from a viral infection, and can significantly impact daily life. These are leading causes of new disabilities. In a 2023 survey, 66% of Minnesotans experiencing at least one long COVID symptom reported difficulty with at least one daily activity.'
 
Evanston resident Rebecca Groble greets Mayor Daniel Biss before she spoke to City Council about her 26-year-old son, Gabriel Hull, who has been bed bound with severe chronic fatigue syndrome for six years. Gabriel was a college student when he contracted the disease, also called myalgic encephalomyelitis. “His mind is fine, but he’s trapped in a body that doesn’t work,” she told the council. Major research funding has been halted by the Trump administration, Groble said. “Raising awareness of its impact and the need for research and funding is my cause, but my son Gabriel is my reason.” Said Biss: “I would just ask the council and those in the public to join me in recognizing Rebecca and thanking her for her advocacy.”
Click to expand...

https://evanstonroundtable.com/2025/05/28/at-this-time-for-her-son/
 
Healio: '‘Evidence-based and ethically sound’ definition of long COVID still ‘too sensitive’'

ME/CFS ‘eerily similar’ to long COVID

“ME/CFS shares overlapping symptoms with long COVID, such as profound fatigue, post-exertional malaise and cognitive dysfunction,” Fineberg said.

This overlap has historical context, according to Peluso.

“If you read early accounts of ME/CFS outbreaks from the 1980s, the clinical descriptions are eerily similar to what we were seeing in March 2020 to June 2020,” he said. “The challenge has been that most cases of IACCs before long COVID are sporadic and have been challenging to study at scale.”

The circumstances of the COVID-19 pandemic were unique in that nearly the entire global population was simultaneously at risk for SARS-CoV-2 infection, Peluso added.

“Many infections were confirmed through widely available testing, and there was a broad awareness of the post-acute condition from early on due to patients sharing their experiences on popular and social media,” he said.

The question, though, is what this means for patients with either long COVID or ME/CFS, or both.

“It means that studying one of the conditions is expected to potentially be of benefit in understanding the other,” Peluso said. “It means that there is probably some shared biology of these conditions, and that if we identify treatments for one there will be a strong rationale to test them for others. It also provides a strong argument against the skeptics and those who engage in medical gaslighting.

“These conditions are real and with the right resources we should be able to figure them out,” he added.
 
National Academy of Medicine: 'Dr. Betty Diamond on Scientific Progress, Patient Experience & Expanding Research on Chronic Lyme Disease'

'Another important point the report makes is that Lyme IACI isn’t alone. There are other post-infectious conditions like it — Long COVID, for example — where people simply don’t fully recover. Many of the symptoms are similar: fatigue, pain, brain fog. The report argues that we don’t have to wait until we fully understand the biology before we act. We can begin conducting well-designed clinical trials now to address some of the most debilitating symptoms.'

'I think COVID affected so many people. It’s probably hard to find someone who didn’t get it. So now, nearly everyone knows someone with Long COVID. And when that person is someone you know well — someone who’s honest, doesn’t complain unnecessarily, enjoys their work and hobbies, and suddenly can’t do those things anymore — it forces you to see that this is real.

Long COVID has changed how we think. I’ve also worked on the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome, and the same challenges apply there.'

As we learn more about the pathogenesis of this disease, we’ll move from managing symptoms — which is where clinical trials can start today — to actually trying to interrupt or slow down the disease process itself.'
 
6/2/25 - Conversations on Health Care: '400 Million+ People Globally With Long COVID: A Top Researcher Seeks Solutions'

'Dr. Igor Koralnik, the co-director of Northwestern Medicine’s Comprehensive COVID-19 Center, is one of the world’s leading Long COVID researchers.

I the second part of our two-part series on Long COVID, Dr. Koralnik explains how patients who have experienced more episodes of COVID are at a higher risk of developing Long COVID. He explains that his work includes investigating potential causes such as viral persistence, autoimmune responses, and microvascular changes. His clinic also supports patients through regular virtual support groups that provide education and emotional care.'
 
BioVie: 'Long COVID Treatment Landscape and BioVie’s ADDRESS-LC Trial (Hosted on April 10, 2025)'

'BioVie hosted a virtual investor event on April 10, 2025 featuring key opinion leader (KOL) Lindsay McAlpine MD, Yale University, to discuss the unmet need and current treatment landscape for long COVID, as well as to provide an update on our ADDRESS-LC clinical trial. Chronic neuroinflammation, potentially driven by persisting viral spike protein, is one of the main hypotheses that has been proposed to explain the persistence of symptoms in long COVID. Our lead candidate, bezisterim (NE3107), has demonstrated the ability to modulate key inflammatory pathways implicated in the chronic inflammation seen in long COVID without inhibiting their homeostatic functions.'
 
New York Times: 'Kennedy Says Healthy Kids Don’t Need Covid Shots. Is That True?'

What’s the risk of long Covid?

"Estimates of long Covid among children vary widely. But even at the lower end, studies show that around 1 percent of children in the United States, or roughly one million children, have ever had long Covid, broadly defined as symptoms that persist or emerge at least three months after an infection. These include many children who had mild or asymptomatic infections.

The condition commonly causes children to experience fatigue, dizziness, shortness of breath and trouble concentrating and sleeping.

“We see kids that are having huge impacts on their everyday activities — they can no longer go to school because they’re having such profound fatigue or other symptoms,” said Dr. Laura Malone, the director of the Pediatric Post-Covid-19 Rehabilitation Clinic at the Kennedy Krieger Institute. “These kids are not able to play sports or go to their school dances,” she added."
 
SNT Gatchaman said:
A disability lawyer: Why I'm Convinced Long Covid Is REAL

(Because disability support is nearly impossible to obtain or survive on in the US. "Why on Earth would anyone be disabled if they don't have to be?")

https://www.youtube.com/shorts/RbPvaH_zk-I
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That was always the great debunker for all the ridiculous claims about fashionable illnesses, "secondary benefits", "wanting" to be disabled and choosing a totally discriminated illness, and so on, but reason (or honesty, or honor) was never a factor in those beliefs so here we still are, actually no further than things ever were.

Thread on reddit made by the same person: I'm a disability lawyer who handles Long Covid cases. I made a short video summarizing my frustration with people not believing the reality of Long Covid.
 
Harvard: 'Brain Barriers and Breaking Barriers'

'Neuroscientist Ya’el Courtney’s journey from poverty to PhD'

'Now a postdoctoral scholar in immunology and rheumatology in the Department of Medicine at Stanford University, Courtney focuses on uncovering the mechanisms underlying post-acute sequelae following viral and bacterial infection—basically, why some people stay sick or feel unwell long after they've recovered from an infection. (Long COVID, is a well-known example.) Her long-term goal is to run her own academic research group while serving as a public advocate for science.'
 
American Journal of Health Promotion: Elizabeth, R. Unger, PhD, MD

Long COVID as an Infection-Associated Chronic Condition: Implications

In Brief​

A link between infection and chronic illness has been recognized, along with the complexities of interactions between pathogen, environment, host genetics, route of exposure, and timing of outcomes. The COVID-19 pandemic has brought this issue to the forefront and Long COVID is recognized to be an infection associated chronic condition. However, given the wide range of Long COVID presentations, the singular expression gives a false sense of simplicity. Long COVID is best considered as a group of infection associated conditions requiring developing research studies and treatment trials that address the inherent heterogeneity.
 
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