News from the USA, United States of America

This was some months ago but sharing this snippet seen today from Dr. Fauci, 1/27/24 on Progress, Potential, And Possibilities podcast interview.

At 33:25 minute-mark:

"...the thing that is really fascinating, and the more and more we learn about it, the more fascinating it is, and it's really been brought up to the front burner by COVID, is that there are a number of syndromes now that are post-viral, chronic, debilitating syndromes, that do not appear to be related to the persistence of the virus - but by the triggering of a dysregulation of the inflammatory immunological response.

You know, we've seen it in post-Lyme disease. We've known for decades mononucleosis. Remember, you were in school and some kids would get mono they'd be out for months and months. We've seen it with Myalgic Encephalomyelitis, chronic fatigue and we don't know what the specific infection or group of infections are.

But now with COVID and long COVID, we're starting to see though 3 to 4 to 5% or more of the population has a post-viral syndrome that we don't know what impact that's going to have on neurological, aging or what have you - 5, 10 15 years from now. It's kind of alarming that a certain percentage of people and when you have billions of people in the world, having gotten infected, even if a very small percentage, 3, 4 or 5% of them, wind up with post-viral syndromes - we're going to have a real problem."

 

@Hutan On that note, sharing this virtual meeting/forum on Wednesday, 6/26: "Johns Hopkins Health Policy Forum: A conversation with CDC Director Mandy Cohen"

https://hub.jhu.edu/events/2024/06/...a-conversation-with-cdc-director-mandy-cohen/

 

SHNS (Massachusetts): 'Briefing Planned To Better Understand Long COVID'

'Doctors, public health officials and others will brief lawmakers Tuesday on potential steps state government could take to address health equity implications of long COVID and to support people..’

'Department of Public Health Bureau of Infectious Disease and Laboratory Science Medical Director Larry Madoff and DPH Assistant Commissioner Dawn Fukuda are among those slated to discuss COVID-related chronic conditions and the public health response to them.’

 

2/1/24: 2024 Whittington Lecture at Georgetown with Dr. Anthony Fauci, Pandemic Preparedness and Response: Lessons from COVID-19

(39th min) "..finally, there's something we have not seen with other viral infections and that's the post-acute sequelae often referred to as Long COVID, which means signs and symptoms that are not completely explainable by readily apparent pathogenic processes. They consist of everything from cognitive dysfunction or brain fog, as people say, dysgeusia, anosmia, fatigue, dyspnea, and a variety of bizarre symptoms that people sometimes get accused of actually having a little problem mentally or emotionally - but it isn't. It's real symptoms.

And the mechanisms of that range from persistent inflammation to viral persistence, to immunological dysfunction. Bottom line, to save you the trouble with trying to scrutinize the slide, we don't really have any idea what causes Long COVID, but there are some interesting new probing into potential disease mechanisms.

It's serious because if you're talking about billions of people infected, about 9% of people in the United States according to the CDC, are currently experiencing Long COVID. Okay that was a pretty complicated first lesson, but it's important."

 

How to Fix $1.6 Billion Long COVID Program: Experts Weigh In
https://www.medscape.com/viewarticl...long-covid-program-experts-weigh-2024a1000bs4

When the National Institutes of Health (NIH) launched a $1 billion dollar research effort in 2021 focused on long COVID, hopes were high that it would lead to some answers for the mysterious riddle of the complex condition. Now, more than 3 years later and with total funding of about $1.6 billion, critics contend the federal government has little to show for its efforts.
...
[Al-Aly] argued that officials running the NIH program, known as the RECOVER Initiative, have been too defensive about the effort and not as open to helpful changes that would move it forward.
...
First Step: Improve Coordination
Improving coordination among researchers of long COVID is a great place to start, Al-Aly said. "We all want to move the ball forward, so let's put our heads together and do it," he said.

He recommended establishing an advisory board that includes the nation's top experts on long COVID. "Getting these people together in a room to discuss the best ways to allocate resources would help," he said.

Long COVID has proven to be distressingly similar to other post-viral syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome, according to a June 2023 article in the journal Frontiers of Medicine. Physicians who have worked on these conditions are also important resources for investigating the disease, he said. They shouldn't be on the sidelines. Many of those at the top of RECOVER aren't experts in these types of conditions, Al-Aly said.
...
Step Two: Move Beyond Symptom Management
Another overarching concern with RECOVER and with the condition as a whole is that researchers are still largely focused on symptom management rather than looking more deeply into the biological mechanisms driving this disease.
...
Step Three: More Clinical Trials
Another criticism of RECOVER is that it's heavy on observational studies, which make up 47% of the budget thus far rather than prospective clinical trials. Observational studies don't test potential treatments that could work for long COVID, rather, they follow participants on their current treatment regimen to see how they're fairing.
...
Step Four: Take the Focus Off 'Soft Therapies'
Additionally, McCone said NIH needs to take the focus off of what he called soft therapies, using things such as melatonin. Last month, the agency announced it would be testing the over-the-counter sleep supplement as a potential treatment for sleep disturbances due to long COVID. Other treatments, such as exercise therapy, have also been criticized by patients as not taking the condition seriously enough or being ineffective.

"We need pharmaceutical interventions that have a plausible mechanism for intervening with the pathophysiology of this disease," said McCone.

 

I know recordings from today’s webinars should be up in the next week(s), but sharing some screenshots if helpful for anyone with wanting to catch or view in the meantime from today. If any that tuned in want to share any thoughts, other screenshots I missed, etc please feel free to share.

RECOVER Sleep & Energize webinar feat Dr. Bateman (and Betsy Ladyzhets covered a bit)

Tufts CTSI: 'a virtual briefing on Long COVID in Massachusetts’

Tae Hwan Chung, M.D., Director, Johns Hopkins, Presents on POTS & LC (wasn't able to tune in long for this one, will have to watch recording)

edit:
Slide presentation available (68 slides) for Massachusetts: “Long COVID and Health Equity in the Commonwealth: Moving to Policy Solutions.

https://repmindydomb.com/wp-content/uploads/2024/06/6.25.24-Long-Covid-pt-2-full-presentation.pdf

 

(not to overdue it, last one based on timing - with his book tour he may be aiming to raise awareness in this space and [possibly?] advocate for, I suspect or wonder)

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."

 

Daily Hampshire Gazette: 'The lingering effects of long COVID: Domb hosts second briefing on the topic'

"Domb called the virtual briefing — the second such gathering this year — to hear what public health officials and health care administrators had to say about the lingering effects of long COVID on Massachusetts residents and what the state could do to address inequalities that result from it."

McCray also cited statistics on the ongoing labor shortage and that more than half of Americans have less than $1,000 in savings, problems McCray said have been exacerbated by long COVID.

'“Employers need to understand long COVID, our unions need to understand long COVID, what it is and how it could be impacting workers. School districts need to understand long COVID because children can also have long COVID.”

 

90-minute recording from yesterday's "Legislative Briefing: Long COVID & Health Equity, Part 2: Moving to Policy Solutions, 06.25.24" with Rep. Domb of Massachusetts.

 

(a 'way back Wednesday' throwback) The BMJ podcast interview, 9/18/20: "Anthony Fauci - on..Long COVID.."

Fauci: "We're learning week by week & month by month about this disease...we need to pay attention, we're starting to see things that are what we call emerging information. Clearly there are people who when they recover...virologically, all of a sudden you look at how long it takes for them to get back to normal. The more you look at it, there are some people who go for a significant period of time with myalgias, fatigue, what they refer to as brain fog - an inability to concentrate.."

 

2/1/24: 2024 Whittington Lecture at Georgetown with Dr. Anthony Fauci, Pandemic Preparedness and Response: Lessons from COVID-19

(39th min) "..finally, there's something we have not seen with other viral infections and that's the post-acute sequelae often referred to as Long COVID...."



But we do and have seen it with other viral infections ..... is Fauci making out that Long Covid is the first and only?

 

That 47% on observational trials, around $500 million, was by far RECOVER's big mistake. The NIH essentially decided to give half of RECOVER's funding to an extraordinarily large observational trial with around 40,000 people. They collected so much data and collected it so badly that people in the know have said they will be shocked if anything useful comes out of that half a billion investment.

There's understandably been a lot of criticism on here towards the clinical trials - but those clinical trials represent just 13% of RECOVER's original budget, and they are far more focused than the observational trials, which frankly tells you a lot more about the observational trials than the clinical trials.

By contrast, RECOVER spent just $40 million of its funding on outside biomedical studies, which is in my opinion the greatest miss in the history of these illnesses - if that had been $400 million, you'd have actually for the first time created a large academic field. It also spent that $40 million really quite well all things considered. Which is where I differ from a lot of the Long Covid patient advocates - I completely agree with their emphasis on criticising the observational trials and the worst clinical trials, like the exercise one, but I think they should be calling for far more investment from RECOVER into fundamental research as opposed to further clinical trials at this stage.

 

From Aspen Idea Health Conference (6/21)

Q: "What is CDC's role regarding Long COVID?"

(44 min mark) Cohen: "Obviously, we have learned a lot about the impact of viruses and frankly, we're learning so much about what we don't know in terms of our own immune systems - why do some people get so sick, and other people aren't impacted as well? Why does some people have a one week course and others have months and months and months of ongoing persistent symptoms?

We've made a huge investment across HHS related to Long COVID, a lot of that is basic research that's being done by NIH. Dr Rachel LeVine who is here is leading that work for the Department - out of the Office of the Secretary, because it is important that we do it not just from CDC, but across. The most important thing I want to continue to reiterate, is getting vaccinated. Vaccination reduces your likelihood that you are going to get Long COVID. Those are the important links we're trying to make for folks.

I'll just say on a personal note, someone - one of my very, very - close, close friends has Long COVID - is still struggling with Long COVID. I know it impacts many aspects of her life - so I see it personally. It's something that's very much on our mind." [FYI @Hutan]

Also makes sense for the semi-recent impassioned plea for vaccination w/Bloomberg Talks Podcast (3/4), given her close friend's struggles: "..I just wanted to make sure that folks knew...that will save people's lives & frankly reduce the risk of long covid.."

 

University of Missouri-St. Louis: “MIMH’s Precision Health Research team studying effects of COVID infection in HIV patients, with implications for wider population”

'an estimated 30% of cases, still leading to symptoms such as fatigue, brain fogginess or post-exertional malaise that can persist for weeks, months or even years as part of a chronic condition known as “Post-Acute Sequelae of SARS-CoV-2 (“PASC”), also referred to as “long COVID.”'

“Right now, clinicians don’t have a tool – a clinical aid – to help identify whether or not patients are at risk for having long-term problems,” said Robert Paul, the director of the Missouri Institute of Mental Health at the University of Missouri–St. Louis

"Paul is hoping a pair of research projects funded by the National Institutes of Health that are currently being undertaken by MIMH’s Precision Health Research team – alongside experts in neurology at Yale University School of Medicine and infectious disease at the U.S. Military HIV Research Program and Chulalongkorn Medical School in Bangkok, Thailand – might help increase understanding of how the virus works in the human brain."

'Paul and his team have been collaborating with Dr. Serena Spudich, co-director of the Yale University School of Medicine’s Center for Brain & Mind Health and the division chief for neurological infections and global neurology, on a $3.2 million grant from the National Institute of Mental Health titled “Longitudinal determination of nervous system consequences of SARS-CoV-2 in virologically suppressed people with HIV-1 treated in early infection.” Nearly $700,000 of that funding has been directed to UMSL, with Paul serving as the co-principal investigator.'

'Paul and his team are also part of an international research team, led by Dr. Trevor Crowell, the director of the Clinical Research Directorate at the Military HIV Research Program..this second NIMH-sponsored study is supported by a total grant of $3,822,251.'

'Paul’s team brings particular expertise in using neuroimaging to quantify and visualize damage caused by HIV and COVID-19 on brain structure and function'

'Paul and his collaborators are interested in trying to learn whether COVID-19 also establishes early viral reservoirs in the brain or synergizes with HIV-related viral or immune mechanisms to increase the risk of long COVID-19, but now that remains unknown.'

 

House of Representative, Judiciary Committee (6/26): 'Follow the Science?: Oversight of the Biden Covid-19 Administrative State Response'

Congressman Thomas Massie (R-KY): 'The Microvascular Research Foundation works to develop effective research-based treatment protocols for patients suffering from Long COVID."

Dr. Jordan Vaughn: "Though often called Long COVID, is the other thing I want to talk about. It's really the devastating...it's changing the landscape of a lot of the medical disciplines. Cardiologists are seeing it, the neurologists are seeing it - they really don't know what to do with it since 2022."

Dr. Andrew Tobias Pavia MD, Department of Pediatrics University of Utah School of Medicine: " they also reduce the risk of Long COVID and multi-stem inflammatory syndrome, or MISC, which is a very serious and potentially lethal complication that affects children after infection covid-19.."

Rep. Pramila Jayapal (D-WA): "I want to talk about Long COVID because it is a real issue. It continues to impact millions of Americans.."

Dr. Pavia: "...being vaccinated reduces your chance of Long COVID. Even if you have a breakthrough infection, it probably is because it prevents a virus from establishing reservoirs in different parts of the body and leading to permanent damage - but that science is evolving. We don't fully understand Long COVID yet and it's a critical need.

Rep. Jayapal: "are there recommendations for what we need to do to address Long COVID?"

Pavia: "We clearly need science that understands the basic mechanisms and we need funding for trials of possible interventions, because so far and while we're making progress on the science front, we tragically we don't have any really effective treatments yet."

 

Weekly Pod with Jon Stewart, 6/27/24:

"...the long COVID community, that's a really interesting one - because there are, from what I'm understanding, and I, unfortunately I'm not very well versed in all that. But like millions, we're talking about millions of people - that have residual effects from getting these infections and have been debilitated. I mean, that's there's no question there. And it doesn't seem to be, you know, progress and research, I assume is glacially slow. And who knows if they're even studying the correct thing. So that'll be really interesting to get into."

Jon Stewart: "keep those comments coming on the socials"

https://open.spotify.com/episode/6zDxDPCr8wiiJKmbxa7HmP?si=p_kKyulrRcSakJybqvornQ

Seems apt timing to share on his advocacy in certain causes previously: "How Jon Stewart Became a Fierce Advocate for 9/11 Responders"