News from the USA, United States of America

Winter 2025, Society for Neuroscience - 'Future of Neuroscience: Ya’el Courtney'

Ya’el Courtney is a PhD candidate in neuroscience at Harvard Medical School

'After an immunology postdoc, she aims to lead a lab focused on mitigating post-infection brain effects, providing hope for those impacted.'

'I found online forums of people noting similar cognitive impairments after a viral infection....I’ve become integrated in these patient communities for people with long COVID..people with ME/CFS..'

'Moving forward, I’m hoping to study the effects of viruses on the brain post-infection. I don't know why I recovered following my undergrad mono and strep infections compared to someone else who didn’t. My life goal is to figure that out and help the people who are on disability, who cannot work, who can't function, who are not living the life that they used to live because of these mysterious post-viral infection disorders.'

'A key part of my success came from funded summer research programs. I did the Blueprint Initiative Enhancing Neuroscience Diversity through Undergraduate Research Education Experiences (ENDURE), which is funded through NINDS'

https://twitter.com/user/status/1890539454672056630

 

LA Times: Opinion: Long Covid is solvable, but we need more clinical trials

By Amy D. Proal
LINK

 

Mercury News: 'Bay Area long COVID sufferers battle mysterious symptoms and medical skepticism'

'Millions of patients nationwide are often left scrambling to find doctors who take their symptoms seriously — and can find an effective treatment'

'Her initial fever and cough contorted into crushing fatigue, brain fog, blurred vision, dizziness, chest pain and more — and the debilitating symptoms never left.'

'Hooper’s experience is all too common. An estimated 17 million adults in the United States have long COVID, according to the CDC..'

'Dr. Hector Bonilla, co-director of the Stanford PACS clinic, sees 15 to 20 long COVID patients a week'

“Medical societies need to reach out for help in educating their providers on chronic illnesses like long COVID and ME/CFS,” said Jaime Seltzer, a researcher at Stanford Medicine — which is not affiliated with the PACS clinic — and scientific director for #MEAction, a nonprofit organization advocating for chronic illnesses.'

 

I'm surprised that Amy, who I believe had some mild post-viral syndrome once, is framing long-covid like hiv, presumably because of her belief that viral persistence is the driver and causing multiple consequences, and also because that's the way to get her the funds she wants? Most of the LC cases I see on Twitter are so ME or CFS-like (I regard the two as different /overlapping concepts) , although that might just reflect Twitter circles, And this way of framing long covid is that Anything that covid triggers is in the "in group" to be researched which urgency and anything outside of it is , well, out of it. M,e is mentioned as something that might also benefit, (perhaps years down the line though, who is even looking at viral persistence in m,e? & we are all lumped together, whatever the course or trigger) and Yet she refers to m.e and Lyme researchers as being in a battle to understand them. Afaics, in the US, most ME scientists have jumped ship to follow the money (because yes, big sums of money do entice researchers) and the NIH is turning down the dial on m,e research to simmer level.

 

PBS Cascade: 'For many in Washington, Long COVID care remains out of reach'

'A UW clinic is one of a few in the nation that provides treatment and research on the chronic illness, but faces new federal funding challenges.'

'Part of the difficulty lies in a lack of clarity around Long COVID’s prevalence and underlying mechanisms.'

 

The News-Item: 'Dear Secretary Kennedy, cure long COVID'

'My daughter has it. It is a nightmare, and there is currently no cure. We need you, Secretary Kennedy.'

"...you get post-exertional malaise (PEM), also known as “crashing.”

'Long COVID is an umbrella term for a host of symptoms that come after a COVID infection. Long COVID has many symptoms in common with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia and postural orthostatic tachycardia syndrome (POTS). Research estimates that half the people with long COVID meet ME/CFS diagnostic criteria'

 

For what it's worth, and I doubt it's much, the billionaire owner of the LATimes, a physician who made a fortune selling cancer drugs, is all in on the MAGA train, has been trying to get a position in the cabinet, and seems to be very focused on two issues for the future: cancer and Long Covid. Not my impression, he's been Xitting a lot about it. The first makes sense, it's how he got rich, LC I don't know why.

I doubt anything useful would come out of it, but it's worth monitoring, maybe approaching him. I don't see him as an ally, but he could be useful. Perhaps more as a workforce issue. For all the physical impairment that LC is responsible for, it's the brain fog that is the most important problem, given that this is now an intelligence economy. Brain fog is very bad for an innovation economy.

 

Appreciate this heads up, @rvallee. I hadn't seen or put that together yet.

Sharing for sight from the referenced owner, yesterday on X:

https://twitter.com/user/status/1891142334416331216


'The country now faces a huge challenge: to confirm persistence of Covid in our bodies and does it lead to increase in cancer in the young? Can we clear this virus? We must solve this together for the world. This and the cancer vaccine will be my focus.'

 

FYI, @rvallee

9/8/22, Forbes: 'Billionaire-Backed Group Steps Up Hunt For Long Covid Treatment'

'The Long Covid Research Initiative (LCRI) hopes to accelerate efforts to understand and treat Long Covid...'

'LCRI has already secured a commitment for further funding from the Chan Soon-Shiong Family Foundation, led by biotech billionaire Dr. Patrick Soon-Shiong (the final amount has yet to be settled)'

9/22/22, Fierce Healthcare: 'A new global collaboration of scientists, clinicians and patients aims to hasten clinical trials on long COVID'

'The Long Covid Research Initiative (LCRI), part of the nonprofit PolyBio Research Foundation, is run by a team of about a dozen volunteers and thus far has amassed a roster of two dozen researchers and clinicians.

'So far, its backers include Balvi, a scientific investment fund that has committed $15 million, and the Chan Soon-Shiong Family Foundation, which has donated an undisclosed amount.'

'What is needed, he believes, is a “next generation” T-cell therapy that can kill contaminated cells, which antibodies do not do.'

 

(lastly, for anyone that wants to go back and watch)

9/18/20, LA Times Studio: '‘Second Opinion,’ Episode 4: The Long-Haulers'

'Our fourth episode examines the long-term health impact of COVID-19 on survivors of the disease. Los Angeles Times Executive Chairman Dr. Patrick Soon-Shiong, a surgeon and scientist, is joined by Dr. Carlos Cordon-Cardo, professor and chair of the Department of Pathology at the Icahn School of Medicine at Mount Sinai.We will also hear from a group of recovering coronavirus patients who continue to suffer from a variety of symptoms months after contracting COVID-19. The discussion is moderated by Eli Stokols of The Times' Washington bureau.'

 

New York Times: 'Scientists Describe Rare Syndrome Following Covid Vaccinations'

'In a small study, patients with the syndrome were more likely to experience reactivation of Epstein-Barr virus and high levels of a coronavirus protein'

'But in a small number of people, the shots may have led to a constellation of side effects that includes fatigue, exercise intolerance, brain fog, tinnitus and dizziness, together referred to as “post-vaccination syndrome,” according to a small new study.’

“I want to emphasize that this is still a work in progress,” said Akiko Iwasaki, an immunologist at Yale University who led the work.

"..it’s the first kind of glimpse at what may be going on within these people.”

'Because the symptoms reported by people with post-vaccination syndrome show considerable overlap with those of long Covid, the researchers also analyzed blood from 134 people with long Covid and 134 healthy controls.'

'Yet the results, from a scientific team known for rigorous work, suggest that post-vaccination syndrome deserves further scrutiny, they said.'

'Dr. Iwasaki and her team found that people with post-vaccination syndrome had significantly higher plasma levels of the coronavirus spike protein than everyone else — including those with long Covid — from 26 to 709 days after receiving the vaccine.’

 

New York Times: “How Did Covid Change Your Life?”

‘The New York Times wants to hear from readers reflecting on what life looks like now, five years later’

'Tell us how or how not, and whether it was changed permanently, slightly, temporarily or not at all.’

 

C&EN: 'Long COVID studies stymied by pharma’s lack of cooperation'

'Academic researchers want to repurpose drugs for the condition. Manufacturers aren’t supplying them'

Avindra Nath believes he has a way to treat certain people with long COVID—or at least shed a light on their condition.

'Nath, a neurologist with the US National Institutes of Health (NIH), wants to use pembrolizumab to try to help improve the conditions of people with long COVID whose T cells may be exhausted. T-cell exhaustion is still poorly understood in long COVID—par for the course with the multifaceted postviral disease that’s now affected more than 400 million people worldwide (Nat. Med. 2024, DOI: 10.1038/s41591-024-03173-6). But some studies have revealed changes in T-cell responses that indicate the immune cells are, at the very least, dysfunctional, which could allow reservoirs of SARS-CoV-2 to persist and cause chronic inflammation (Lancet Infect. Dis. 2025, DOI: 10.1016/S1473-3099(24)00769-2).'

'Pembrolizumab is a checkpoint inhibitor that binds to the protein PD-1 on T cells to help them recognize and attack invaders. It’s better known as Keytruda, the blockbuster drug that earned its manufacturer, Merck & Co., $29.5 billion last year.'

"All the rest we can do ourselves," Nath says. "We just need the drug."

'Nancy Klimas, director of the Institute for Neuro-lmmune Medicine at Nova Southeastern University, says she approached GSK, Lilly, and Regeneron about testing monoclonal antibodies as treatments for long COVID patients and was repeatedly declined.'

Peluso says his group at UCSF has taken this approach with Shionogi and Aerium, and more trials are on the way. But in the meantime, the specter of long COVID is only growing as more people around the world are infected with COVID-19.

"I don't want to paint this picture that is horrible," Peluso says. "But we just really need to get moving."

 

Then buy it in with your own bank account like I did and stop whingeing, mate.
But to be honest I cannot see any ethical justification for giving sick people something like that without some coherent theory.
It sounds very much like posturing to me.

 

Would they sell it to the researchers at reduced cost and not the wholesale price? It says Keytruda is $11,500 a dose.

 

Washington Post: 'Women have a higher risk for long covid. Estrogen may play a role'

'A new study shows non-menopausal women between the ages of 40 and 54 had a significantly higher risk of developing long covid than men'

'Women have a higher risk of developing long covid than men, depending on their stage of life and whether they have experienced menopause, according to a new nationwide study from RECOVER, the long covid research initiative funded by the National Institutes of Health'

'Women with long covid also had increased levels of a gene that is associated with autoimmune disease, called Xist, compared with women who did not develop long covid, Blish said.'

'In contrast, Blish said, men with long covid appear to have a harder time killing off the coronavirus in the first place, which suggests that their symptoms may be a result of a more persistent infection.'

 

Medscape: 'New Five-Type Index Provides Doctors Guide for Long COVID'

The new five-type index, developed by federal researchers with the National Institutes of Health’s RECOVER COVID Initiative, identified the most common symptoms in 14,000 people with long COVID

 

A bit weird since all women use XIST to silence one of their X chromosomes.

 

VT Digger: 'Mary Cushman: UVM Medical Center’s academic mission is critical to Vermonters’ health'

Mary Cushman is vice chair of medicine and co-director of the Vermont Center for Cardiovascular and Brain Health at the UVM Larner College of Medicine, and director of the thrombosis and hemostasis program at the UVM Medical Center.

'If UVMMC were to severely reduce or eliminate its research and educational activities, it would prevent stories like mine from being told.'

'Bridging from this research, we are now studying causes of long Covid, and we aim to develop knowledge that will bring treatments to the community of patients in Vermont suffering from the long-term debilitating effects of the virus.'