News from the USA, United States of America

6/20: 'The Saban Research Institute Hosts Annual Science Day With Focus on Long COVID Research'

"Hundreds convened to explore the impact of long COVID on kids and share discoveries from basic science to clinical translational research"

"On June 18, more than 450 researchers, physicians, trainees and staff gathered to share novel findings, discuss current challenges and forge new scientific collaborations at Science Day 2024—The Saban Research Institute’s (TSRI) annual symposium and poster session at Children’s Hospital Los Angeles."

"This year’s theme was “Long COVID in Pediatrics: Implications for Individual and Population Health Outcomes.”

"Though the pandemic has waned… a significant number of young patients continue to be affected by chronic symptoms due to COVID infection,” said Executive Vice President and Chief Operating Officer Lara Khouri in the opening session..."

Pat Levitt, PhD, CHLA’s Executive Vice President, Chief Scientific Officer and Director of TSRI: “‘The world must rise to the occasion to address these challenges. The health and wellbeing of future generations depend upon it.’”

"In the U.S. alone, nearly 6 million young people are affected by long COVID."

"The event opened with three research deep dives from experts at CHLA, Harvard Medical School and Emory School of Medicine."

"David Systrom, MD...shared research he and colleagues are conducting at Brigham and Women’s Hospital to uncover the mechanisms behind post-exertional malaise.."

"..it appears that in some cases, long COVID symptoms aren’t caused by...but rather by damage to small nerves in the skin or other internal organs, and, in turn, the signals from the peripheral nervous system that regulate blood flow and oxygen delivery to the body"

"Cheryl Maier, MD, PhD, Medical Director at Emory School of Medicine’s Special Coagulation Laboratory, outlined her team’s findings on how severe COVID-19 affects the blood’s ability to coagulate..."

"In the afternoon, attendees gathered in the courtyard to explore 119 poster presentations from CHLA researchers, with abstracts covering five major categories..."
 
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Wasn't sure if this was already shared

July 16th Webinar: "Update on Long COVID Research in USA" (have to reserve free ticket if interested)

1. Update on the NIH RECOVER Program

Speaker:
Joseph Breen, Ph.D, Senior Scientific Program Director, NIH RECOVER Program, NIAID

Summary: This presentation will discuss the current status of the NIH RECOVER program including observational cohort studies, pathobiology findings, and clinical trials.

2. Update on Long COVID

Speaker:
Ziyad Al-Aly, MD

Chief of Research and Development at VA St. Louis Health Care System

Summary: This presentation will discuss how the epidemiology of Long COVID changed over the course of the pandemic and provide updates on longitudinal Long COVID studies.
 
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Dakota15 said:
Short clip from Dr. Fauci, 6/25/24 with 'The 92nd Street Y, New York'

'There's a lot of work now that's giving us some insight into what the pathogenic mechanism of Long COVID [is]. It's a real thing. These are not crazy people. This is a real thing. People who are athletic and were able to run marathons who have real trouble just jogging around the block.

I would say months, but it might be years - that we really get our arms around it and be able to intervene in a way to counter whatever that mechanism is that's causing Long COVID."
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Full clip posted today, 7/5/24 - 'Dr. Anthony Fauci in Conversation with Lawrence O’Donnell: On Call'

Host: 'What do you think will be the hope for those of us with Long COVID? What do we know about that?"

AF: "Well, there's a lot of work now that's going on that's giving us some insight into what the pathogenic mechanism of Long COVID. By pathogenic, I mean what is the exact mechanism in your body that's allowing you to have these bizarre set of symptoms, long after you should have recovered.

And there are some pretty interesting things that need to be pursued - like is there an aberrant turning on of the immune system that is reactivating all infections or causing a degree of inflammation that isn't easily detectable by the normal parameters of inflammation that are interfering with function like you know brain fog - you're not able to concentrate - sleeplessness, a variety of things - fatigue is really probably the most important.

It's a real thing - these are not crazy people - it's a real thing. People who are athletic and were able to run marathons, who have real trouble just you know jogging around the block so I hope that in the next I would say months, but it might be years - that we really need to get our arms around it and be able to intervene in a way to counter whatever that mechanism is that's causing Long COVID."
 
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ME/CFS Documentary Seeking Participants
Executive producer Kyle Johnson is working on a documentary for Mirame Arts about ME. They hoping to connect with New England area ME/CFS patients and/or caregivers about potentially participating in the film and sharing their experiences, stories, and lives.

If you're interested in participating, email mecfs@definite.media and include two or three sentences about yourself along with a few good times for a Zoom meeting.

https://twitter.com/user/status/1809382716850217388
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Some light on MVG & on NASEM

Texas Public Radio: 'Petrie Dish: Defining long COVID'

'Verduzco-Guttierrez runs two long COVID clinics, and was on the committee selected by the National Academies of Sciences, Engineering and Medicine...'

(from 22-minute audio portion)

Host: "POTS, is common in Long COVID patients, a form of Dysautonomia...their blood vessels don't tighten up enough to push blood up to their brain..their heart rate jumps...they can also experience debilitating fatigue"

(LC Patient) "My life was full..now I have to choose what I'm going to be doing on a daily basis - I have to be very intentional. If I know I'm going to do something that is going to require a couple hours out, I know the day before I need to rest. I can't plan more than 2 things a day...with my brain fog, I have to have someone write down everything that is said...I can't remember a lot."

"17 million American adults have Long COVID"

(LC Patient, apologies I couldn't make out name on audio) "Nothing is helping us."

MVG: "Anyone can be impacted by this. The young, let's not forget about children..mild COVID..asymptomatic infections."

MVG: "It's really multi-systemic. There is fatigue. There is brain fog. There's usually orthostatic symptoms...memory issues, difficulty finding words.."

MVG: "Long COVID is an entity, that there is pathobiology behind on Long COVID...yes, we may not have the biomarker or blood test yet - but there is something going on in the body, we're learning more...more to come..."

MVG: "This is what I hope comes to next - it's just a stepping stone, to say - here we have this definition - Long COVID is a clinical diagnosis, it's real, please give them this diagnosis...please believe them, and then from a funding mechanism, can we get more funding for research so that we can continue to find treatments and find what's going on? Find that biomarker that we've been looking for..."

Host (Bonnie Petrie): “This patient community has been really fighting the good fight for years now while many of their lives have been turned upside down - it’s important to center their experiences."

MVG: “..whose lives that are turned around, completely. They are dealing with this year after year…they really want to be validated, they want this to be researched, they want treatments for this - they’re not giving up. I love the patient community because they are so passionate.”
 
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Science Quickly (SciAm), 3/14/24: "Large Study of ME/CFS Patients Reveal Measurable Physical Changes"

(12 min episode w/Avindra Nath & Brian Vastag - not sure I caught when it came out in March - thanks @B_V)

Nath: “One, we found that there was activation of the immune system in the ME/CFS patients. It was almost like the immune system was exhausted from being chronically activated.”

“Avi really hopes that this will lead to treatments. Even though the study didn't find so-called autoantibodies, which are a sign that the body is attacking itself, like some studies have found, it did find signs of B and T cell wonkiness, if you will. And the treatments could depend on your sex...So in women, you could try things like checkpoint inhibitors, which are used as a type of immunotherapy for cancer. And for men, you might be able to try various T cell therapies.”

Brian: "I feel like they need to do treatment trials, like that needs to be the next step. Patients are desperate, and patients need treatment, and we can't just wait to figure out the entire pathophysiology, like we need to start.”

Hosts (Tanya Lewis & Josh Fischman, Scientific American's senior health editors): "Well, I'm glad to hear that they're starting, but what about long COVID? Could this research benefit people with that? Yeah, it might. There's certainly a lot more interest in these conditions now, given how many people have long COVID....That's really important, because ME/CFS, and Long COVID both take a real toll. They ruin lives.”
 
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Washington Post: ''The looming public health challenge of long covid'

'Long covid presents a growing public health challenge worldwide, with potentially tens of millions affected by lingering post-infection symptoms. On Thursday, July 25 at 9:00 a.m. ET, join Washington Post Live for conversations featuring leading policymakers, medical researchers and first-hand accounts about the causes, prevalence and long-term impacts of long covid.'

(Registration link embedded and can submit any questions you wish to be asked)
 
Former White House COVID-19 Response Coordinator Dr. Ashish Jha today (short clip) on Chris Coumo's podcast:

(on Long COVID) Jha:"I think Congress should fund the next round of research on this..a lot of companies want to study Long COVID..but they're like where’s the market going to be, is anybody going to actually help us get this funded?”

Jha: “I wish RECOVER had done more on treatments.”

Jha: “Long COVID can be debilitating and we don’t fully understand its mechanisms..I think LC will be 3-4 different conditions. One, tissue damage…two, viral persistence…three, immune dysfunction where the system got revved up and has never gotten back to normal…”
 
Isthmus (Madison, WI): “The long arm of COVID”

excerpts:

“Fatigue, brain fog and other symptoms continue to plague more than 5% of Wisconsin residents”

“Aurora Pop-Vicas is one of the few physicians in Madison who specializes in treatment for long COVID.”

“Pop-Vicas calls long COVID a “diagnosis of exclusion.” There’s no test for it — instead, clinicians must rule out other underlying conditions.”

“The condition is much more than just a personal health struggle, Pop-Vicas stresses. “It takes out of the workforce millions of people every year,” she says.”

“The most common symptoms include fatigue, brain fog, and post-exertional malaise…”

“Besides prioritizing rest, Bonner now dedicates herself to educating others, especially therapy healthcare providers, about long COVID. She maintains a blog about her experience and gives provider training sessions about how to screen for long COVID..”

“Because of long COVID’s huge, multi-faceted impact, addressing the crisis will require more than just further research. “The management of long COVID is in its infancy in Wisconsin and in Madison,” says Pop-Vicas. “This is a societal problem, not just a medical problem. Society should respond by providing community-based services that help with reducing some of these stressors, especially things that improve well being, like financial assistance.”

“And they also feel as if sometimes their disease is not understood — that it’s dismissed or minimized by their community. They don’t look abnormal….And that approach just exacerbates the problem.”
 
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Bonner said:
The management of long COVID is in its infancy in Wisconsin and in Madison
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And literally everywhere. But as infants go, at this age (4.5 years after a 5 decades-long gestation) they usually already mastered object permanence. Meanwhile medicine is staring at the ball right in front of its eyes and refuses to see it, no need to hide it behind anyone's back, it's just not invisible to them because they don't believe in it.

There is no spoonball.
 
7/1/24, Think Queen with Kyne: “Long COVID with Hannah Davis”

Hannah: "Long COVID is basically the development of either new symptoms or new condition after having COVID...conditions like dysautonomia, POTS..and a neuroimmune condition called myalgic encephalomyelitis and many, many others.”

"..90% of Long COVID cases happen after initially mild acute infections.”

"And I was diagnosed with myalgic encephalomyelitis, which is a very serious neuroimmune condition, which involves mitochondrial dysfunction.”

"So literally, the cells that make up my body's energy do not function correctly. So everything takes more energy than it otherwise should.”

"But for the most part, there are no, I mean, there are no FDA approved treatments for Long COVID. There are no cures for Long COVID.”

"...there is a severely deficient medical provider education system right now.”

“Right now, we have a research community that is much stronger than it was in the beginning of 2020. One of the things I learned from this experience was that most medical schools don't actually teach about viral onset conditions.”

"That was a huge deal that talked about the specific symptom called post-exertional malaise. And this is a very weird symptom. I had never experienced anything like it before getting sick.”

"“this research team actually found that in long COVID patients who try to exercise, there's a complete mitochondrial dysfunction. There are huge metabolic changes, both locally and systemically. They found these amyloid plaques that get in the tissue and muscle of long COVID patients who exercise and just tissue necrosis basically. And so things like that are huge leaps into our understanding of the pathophysiology of long COVID. There have been thousands and thousands of studies published at this point.”

"“that's one of kind of our things we like to talk about is it's sometimes communicated as mysterious, but it's really truly not a mysterious illness at this point.”

"It's getting no stimulation because if you end up with myalgic encephalomyelitis and this kind of mitochondrial dysfunction, that's what it does. Like you cannot look at light. You cannot hear noise. That all takes energy.”

“Long COVID is increasingly looking to be some kind of viral persistence. That's one of the major hypotheses, where maybe the virus is living in our body somewhere, like deep tissue, and the immune system is just not fighting it off”

"We're calling for a Moonshot for Long COVID. So this is similar to the cancer moonshot. We're calling for a billion dollars a year for 10 years in designated research funding for Long COVID. There has to date been 1.15 billion. A one-time infusion of it has been generally mismanaged and given to the wrong people. We need this moonshot because we need researchers to get invested in Long COVID as a career.”

"“there was a Senate hearing run by Bernie Sanders in January, and there was bipartisan support for this because it does affect everyone. So there were Republicans talking about how it had impacted their kids and their family members. And they're angry also. And so we really just need to see more investment in research and care.”
 
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Dakota15 said:
Washington Post: ''The looming public health challenge of long covid'

'Long covid presents a growing public health challenge worldwide, with potentially tens of millions affected by lingering post-infection symptoms. On Thursday, July 25 at 9:00 a.m. ET, join Washington Post Live for conversations featuring leading policymakers, medical researchers and first-hand accounts about the causes, prevalence and long-term impacts of long covid.'

(Registration link embedded and can submit any questions you wish to be asked)
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https://bsky.app/profile/exceedhergrasp1.bsky.social/post/3kx3zy4bhkk2k

From Bluesky: Jamie Seltzer announced she will be a panelist at the Washington Post event.
 
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