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Dakota15 said:
Long COVID Rise Symposium at Univ. Washington today, a few screenshots from today. Recording should be up sometime next week

https://twitter.com/user/status/1845133527236395279
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2024 Long COVID RISE Symposium
https://sites.uw.edu/longcovidclinic/long-covid-rise-symposium/

Agenda
https://bpb-us-e1.wpmucdn.com/sites.../2024/10/Final-2024-Rise-Symposium-Agenda.pdf

Slides
https://bpb-us-e1.wpmucdn.com/sites...24-Symposium-Slides-Print-Copy-with-Notes.pdf

This was a mask mandatory event. KN95 masks were available.

CME credits available.

Dr. Beth Unger, MD, PhD, 30 minute presentation, "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Context for Long COVID and other Post-Acute Infection Syndromes".
 
10/14/24, Stanford Medicine: "Unraveling the Heart of Long COVID"

'To explore how long COVID impacts heart health, researchers in this study used induced pluripotent stem cells (iPSCs) differentiated into heart muscle cells, or cardiomyocytes (iPSC-CMs).’

"Emerging research about long COVID suggests that influence of the virus extends to the heart through an intricate interplay of immune response, inflammation, and endothelial cell (EC) dysfunction.”

"Endothelial cells have emerged as key players in cardiovascular complications of long COVID, and understanding how they contribute is crucial for developing treatments and preventative strategies.”

"These cells are important for maintaining healthy blood flow and heart function. In long COVID, endothelial cells become inflamed and dysfunctional. They also release too many CCLs, a chemokine that attracts immune cells and promotes inflammation.”

"This important study shows the potential of targeting endothelial dysfunction and the associated inflammatory responses for treatment of existing heart issues or to prevent further cardiovascular complications in long COVID patients.”

"The cutting-edge work presented in this manuscript highlights the importance of continued research to understand the full scope of the effect of long COVID on the body. As health challenges posed by long COVID continue to evolve, it becomes more important to move closer to finding ways to treat or prevent the long-term impact.”

Copied to the thread on the research:
CCL2-mediated endothelial injury drives cardiac dysfunction in long COVID, 2024, Dilip Thomas et al
 
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Boston Globe: 'What causes long COVID? For nearly half of cases, new research suggests an answer.'

'A study from researchers at Mass General Brigham may pave the way for effective treatments'

'Viruses hide, that’s what they do,” said David Putrino..

'Though others have detected the presence of viral fragments in long COVID patients before, Putrino said the new study is among the most comprehensive. The fact that it was funded by the National Institutes of Health (NIH), he added, is “very important,” suggesting that federal officials may finally be willing to listen to front line long COVID researchers and patient advocates.'

''The traditional medical establishment, including the NIH, Putrino said, has been slow to embrace the viral persistence theory, because it defies conventional medical thinking.'

'But Walt has high-hopes for the new study, which, unlike previous studies, will identify which patients have remnants of the virus present and extend the period of time they receive Paxlovid.'
 
I just came across an interview in Nature today with the director of NIAID - she discusses potential Long COVID drug trials:
This is also true of long COVID drug development. In August, the NIAID took over the clinical trial platform for this post-viral disease. Why the shift?

I mentioned before the ACTIV platform, which is how we got Gilead’s antiviral remdesivir studied immediately. And we used a similar platform approach to study a whole bunch of other treatments, like immune modulators and steroids, for COVID. We didn’t have to use any placebos and could do rapid assessments of drugs — quickly discarding agents that don’t work.

Many people have been asking for a similar approach for long COVID. The feeling in this community is that there hasn't been enough urgency to get a product here. If you talk to many people living with long COVID, you can really appreciate that a lot of people are suffering. We decided that it would make a lot of sense to apply a similar approach to long COVID under the NIAID. And in fact, we just opened the portal for people to submit ideas for drugs that can be tested, whether they're therapies or devices or other interventions. We really want people to submit ideas to us so that we can start getting some of these things into trials.

A challenge with long COVID is that there aren't a number of candidates that may work. There's no obvious treatment right now that screams ‘this needs to get studied immediately’. I think it's going to take some work. But we have to do it, and we have to do it quickly, because this is a really hard problem.

There is also uncertainty around long COVID pathobiology, appropriate endpoints and trial designs. In the case of HIV prophylaxis, it took decades to get from approved antivirals to effective PrEP. Any lessons from that experience for long COVID?

One thing we learned from COVID is that once we have good drug candidates, we can move really quickly. The challenge is that we don't have obvious candidates. But at a recent meeting about long COVID that we hosted, somebody reminded us that AZT [azidothymidine] was originally developed as a chemotherapeutic for cancer [in 1964] and was sitting on a shelf in the National Cancer Institute until somebody said we might want to look at it. Was AZT a game changer? In retrospect, not really; we learned pretty quickly that it wasn't going to be the full answer to AIDS. But, on the other hand, it opened the door to the possibility that we could actually treat this thing.

A lot of people were citing that as an example that we shouldn’t assume that we don't have something that might work for long COVID. We need to have an organized assessment of what we've got, and that's part of the reason we wanted to get that portal out there.
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North Jersey: "Will long COVID sway the 2024 election? These Rutgers researchers think it could"

'An aging U.S. population and the rise of long COVID mean voters with disabilities may have more of an impact on the upcoming election than ever before, a new Rutgers University report finds.'

'The emergence of a long COVID population still suffering with pandemic-related illnesses has also made health care and accessibility more salient'

“We've seen an increase in young people reporting cognitive impairments very consistent with long COVID," added Douglas Kruse, who co-directs the Rutgers program with Schur, his wife. "There's been a special increase there that could have an effect on the election."

'Between aging, long COVID and other factors, one in six eligible voters in the U.S. now has a disability of some type, the Rutgers researchers found. That's double the growth rate of voters without disabilities, their report said.'
 
Medscape:'How Much Does Long COVID Cost Society? New Data Shed Light'

'Long COVID, a major public health crisis, is also becoming a significant economic crisis. A new study in Nature reports that the global annual economic impact of long COVID has hit $1 trillion — or about 1% of the global economy.'

'Public health experts, economists, researchers, and physicians say they are only beginning to focus on ways to reduce long COVID’s impact.'

'But research into long COVID research continues to be underfunded compared with other health conditions, experts noted.'

'Cancer and diabetes both receive billions of research dollars annually from the National Institutes of Health. Long COVID research gets only a few million, according to Goda.'

'But these clinics have faced declining federal resources, forcing some to close and others to face questions about whether they will be able to continue to operate without more aggressive federal direction and policy planning.'

Post copied to the thread about the Nature article:
Long COVID science, research and policy, 2024, Al-Aly, Davis, McCorkell, Iwasaki, Topol+
 
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Post Bulletin (Rochester, MN): 'October proclaimed Dysautonomia Awareness Month in Rochester'

'Madelyn Saner and Lexi Dunn have been advocating for dysautonomia awareness, and organized an event for Dysautonomia Awareness Month...'

"Saner also got a proclamation from Gov. Tim Walz for Dysautonomia Awareness Month."

"For Saner and Dunn, spreading awareness is crucial. POTS is still a fairly new disorder and both women have had to advocate for themselves to family, strangers and even doctors in the health care system."

"The next event they would like to plan would be for International Day of Persons with Disabilities in December."
 
Dakota15 said:
North Jersey: "Will long COVID sway the 2024 election? These Rutgers researchers think it could"

'An aging U.S. population and the rise of long COVID mean voters with disabilities may have more of an impact on the upcoming election than ever before, a new Rutgers University report finds.'

'The emergence of a long COVID population still suffering with pandemic-related illnesses has also made health care and accessibility more salient'

“We've seen an increase in young people reporting cognitive impairments very consistent with long COVID," added Douglas Kruse, who co-directs the Rutgers program with Schur, his wife. "There's been a special increase there that could have an effect on the election."

'Between aging, long COVID and other factors, one in six eligible voters in the U.S. now has a disability of some type, the Rutgers researchers found. That's double the growth rate of voters without disabilities, their report said.'
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I've had an interest in US politics for over 2 decades and follow the election closely. I have not once seen any attempt to reach disabled voters. Not once. Same with local politics here. It is not simply not talked about, not a winning electoral strategy, because the message is always centered around workers, which they usually call taxpayers. People who 'work hard' and do stuff and so on. There are far smaller constituencies that get 100-1000x more attention, and not always just because they have money and influence. We are still political exiles in our own societies.

But I'm wondering with aging populations whether this may change in the future. Usually this is cleanly separated by age, as if disability only exists once you pass 65.
 
Dakota15 said:
Between aging, long COVID and other factors, one in six eligible voters in the U.S. now has a disability of some type, the Rutgers researchers found. That's double the growth rate of voters without disabilities, their report said.'
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Add to that the chronically ill who can still work, and a potentially large voting block could emerge. Many millions of sick people under a single banner. Larger than most unions.
 
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10/21/24, 'National Academy of Medicine Elects 100 New Members'

'The National Academy of Medicine (NAM) today announced the election of 90 regular members and 10 international members during its annual meeting. Election to the Academy is considered one of the highest honors in the fields of health and medicine and recognizes individuals who have demonstrated outstanding professional achievement and commitment to service.'

Newly elected regular members of the National Academy of Medicine and their election citations are:

'Jeanne Marrazzo, MD, MPH, director, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Md. For leading transformative research that has redefined our understanding of relationships between the vaginal microbiome and female reproductive tract infections, HIV pre-exposure prophylaxis (PrEP), hormonal contraception, and risk of STI/HIV acquisition. She has had key roles in NIH-funded networks — Infectious Diseases Clinical Research Consortium and HIV Prevention Trials.'

'Avindra Nath, MD, chief, Section of Infections of the Nervous System, and clinical director, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Md. For pioneering research and strong leadership in emerging and persistent infections of the nervous system by studying pathophysiology, developing treatments, and conducting clinical studies. This includes retroviruses, Ebola, Zika, nodding syndrome, and COVID-19 as well as Long COVID, ME/CFS, and Gulf War syndrome.'
 
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Contagion: 'Detecting T Cell Dysfunction in Post-Acute Infection Syndromes'

'At IDWeek, Nigel McCracken, PhD, COO of Virax Biolabs, discussed their work on developing a diagnostic test for early detection of T cell dysfunction in post-acute infection syndromes like Long COVID, chronic fatigue syndrome, and Lyme disease.'

'The test aims to identify T-cell exhaustion by measuring cell surface markers and cytokines released by B and T-cells.'

'He explained the two types of immune responses: innate and adaptive. “There’s an innate immune response, which is a quick response, and then there’s an adaptive response. The adaptive response is more focused, involving B cells that form antibodies and T cells that are cytotoxic, meant to kill the virus and remove it from the body.”

'“We hope to be able to identify that early to allow treatment management. There are no drugs specifically at this moment, but drug companies are working on Long COVID treatments.'

'..Nigel expressed hope that the increased awareness surrounding Long COVID could benefit others suffering from chronic conditions. “I think the whole thing around Long COVID has helped patients who have dealt with chronic fatigue syndrome for years. It has brought attention to a general problem around chronic inflammatory conditions. We really need to do something about it, as it is causing a huge healthcare problem and a significant burden on society.”'
 
Webinar today - NASEM: "A Long COVID diagnosis: Implications for Social, Behavioral, and Economic Sciences"

Speakers:

(Moderator) Abigail Dumes, University of Michigan and Examining the Working Definition for Long COVID Committee Member

Monica Verduzco-Gutierrez, University of Texas Health San Antonio and Examining the Working Definition for Long COVID Committee Member

Lisa McCorkell, Patient-Led Research Collaborative

Kate Murray, Program Manager, Minnesota Long COVID Program
 
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