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
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.'
Northwestern Medicine: ''New research from Northwestern Medicine reveals link between long COVID and eye health' '..found that patients with long COVID experienced a significant reduction in the density of blood vessels in the back of the eye, compared to healthy individuals' “The change in blood vessels in the deep part of the retina supports the hypothesis that long COVID affects similar blood vessels in other parts of the body, like the brain, which can potentially contribute to the symptoms of long COVID such as memory loss, brain fog and fatigue.” 'In patients with long COVID, researchers found that the most significant change was a decrease in blood flow in the smallest blood vessels in the deeper layers of the retina. Researchers believe this decrease in circulation may be reflective of decreased blood circulation in the brain, which may lead to neurologic symptoms.' 'Building on these findings, researchers are launching a longitudinal study that will examine how the changes in the deep retinal blood vessels relate to patient symptoms and other established markers of long COVID.' 'This issue affects an estimated 17 million adults in the U.S. and comes with significant healthcare and economic burdens, costing about $600 million in lost wages,” said Igor Koralnik, MD
