News from the USA, United States of America

Kansas City Beacon: 'Weathered COVID before? Scientists say every new infection puts you at risk of getting long COVID'

'The sometimes debilitating illness infects a third of people who come down with a case of COVID. Scientists and doctors are scrambling to understand and treat it.'

'She was told exercise would make her better. Now she understands it only made her worse.'

'U.S. Sen. Bernie Sanders of Vermont has introduced legislation that would invest another $1 billion a year for a decade in research, provider education and public education.'

'Scientists have several theories about how long COVID strikes, and they are starting to believe that there may be more than one answer.'

'For example, in some cases, the immune system, which has been activated by the initial viral infection, simply doesn’t turn off once the virus is gone. That means a person’s own immune system can damage the body.'

'Another theory is that when someone has long COVID it could be because they still have traces of the virus in their body.'

“The patients are the experts with long COVID,” she said. “We’re the ones going through the jungle with a machete making the path.”
 
Yale Medicine: 'When Long COVID Worsens Preexisting Chronic Conditions'

'As someone who suffers from both ME/CFS and Long COVID, Billy Hanlon—in his role as the director of advocacy and outreach at the Minnesota ME/CFS Alliance—also advocates for advancing research into these conditions'

"...I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses."

"First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.

"You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives"

"Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID."

"Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses."
 
Politico: "AI sees a lot of long Covid"

"The number of people with long Covid could be three times as high as previous studies have found, according to new research out of the Boston health system Mass General Brigham"

"What’s next? Estiri and his colleagues hope the tool will enable more doctors to diagnose the condition and help advance the study of treatments."
 
2/6/24, Politico: 'Top HHS official warns of ‘medical refugees’

Rachel Levine came to HHS in 2021 to oversee the department’s post-pandemic pivot.

The assistant secretary for health — also admiral in the Public Health Service Commissioned Corps — has established the Office of Long Covid Research and Practice as well as the Office of Climate Change and Health Equity and has spoken in favor of youth access to gender-affirming care.

'On long Covid: HHS is working with the National Academies of Sciences, Engineering and Medicine to get to a working definition of long Covid, Levine said. Deputy Assistant Secretary Michael Iademarco said the idea is to cover the range of symptoms patients experience and give them a reimbursement pathway for care.

On criticism that NIH-led long Covid research isn’t focusing enough on treatment: “Sometimes research takes as long as it takes to have results,” Levine said. “It takes longer than people want, but we want to make sure that we have robust results that will actually help patients.”

Levine added that the long Covid office brought on a new director last month, and that the office is developing an advisory committee on long Covid to help make recommendations on the federal response to long Covid. The office plans to release a report to detail next actions.'
 
11/13/24, INIM: "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID"

'Dr. David Systrom shares new research on neurovascular issues in ME/CFS and Long COVID. The study looks at how both conditions have similar issues.'

 
3/20/24, Slate Culture: "People Feel Like They’re Drowning": The Long Covid Survivors Left Behind

“These people have nothing to really lean on for curative treatment, nothing..zero FDA approved medications for treatment of long COVID. This must change.”

“We've had people who've come to us with debilitating fatigue and neurological changes. And what they're saying is they can't even leave their apartment, much less their bedroom. And what they're looking for is solutions around how to actually feed themselves.”

“What we have in our hands is a public health crisis, which has not been adequately defined by the medical community or our leaders in government, etc. We're dealing with almost an underbelly of society that crosses cultural and socioeconomic backgrounds.”

“Houston, we've got a problem here. And the symptoms are things like ongoing breathing problems, profound fatigue, which we called PEM, post exertional malaise. And then this issue of brain dysfunction where you can't think, you can't process, right?
Your speed of thinking is severely impaired. It's like a brain that's swimming in molasses is the way some patients describe this.”

Host: “How would you rate our response to this in terms of Long COVID?

(Wes Ely, Vanderbilt): I am by the way, fairly middle of the road, not overtly political person, but I'm willing to do this. I think we're at a six and a half at best, maybe a six, meaning five is just barely making it. We are not in the moderate to excellent category.
We're in the not quite okay. I think we're getting there. I mean, we are getting more funding.”

"...the large networks are bogged down with a lot of rigmarole, a lot of bureaucracy that is preventing people from getting answers. And so we have to somehow overcome that. I want to point out that I think that people feel like they're drowning.”
 
5/28/21, The OSA Insider: 'Long Covid/PASC with Dr. Andi Levine'

“Really debilitating fatigue..patients tell me that their heart will start racing with really minimal exertion..they'll climb a flight of stairs..heart rate will be 150 beats per minute"

“There's a lot of theories about perhaps what's going on. Perhaps there's some ongoing inflammatory or immune reaction that's happening in some of these patients that is precipitating these symptoms that they have. There's some reports that there's ongoing sequelae of the virus itself, that perhaps what we're seeing is sequelae of immunothrombosis or thrombotic events that these patients are prone to getting clots and microthrombosis. I think there's a lot of theories circulating that it's kind of this persistent, prolonged, low-level inflammatory immune response.”

“And we've seen this before with other major viral illnesses too, haven't we?"

"Yeah, interestingly, actually SARS-CoV-1 and actually MERS have a similar post-viral syndrome”
 
7/10/23, Health Science Radio: “CU Anschutz Takes Lead in Unraveling the Mysteries of Long COVID”

“We’re looking for patients that have fatigue and kind of exercise intolerance…that have more neurocognitive dysfunction…this autonomic dysfunction..”

“The Admiral has been quoted in previous interviews saying that with regard to long COVID, we need treatments yesterday. So there's a real urgency, obviously”

“There may be ongoing virus in their spinal fluid that's impacting their brain. And we might treat that differently with maybe an antiviral or an anti-inflammation medicine.”

https://podcasts.apple.com/us/podca...ng-the-mysteries/id1512022221?i=1000620624720
 
11/10/23, Health Chatter: Long Covid with Kate Murray & Jay Desai, Long COVID Program Minnesota Dept. of Health

“post-infectious acute infection chronic disease is not unique to COVID..not a new phenomenon..magnitude…getting more attention than it has ever..”

“MDH is really trying to help spread the word about long COVID, including to providers.”

“There is a subset of folks who are being disabled by these infections and their symptoms, they may even seem like the acute infection resolves and they start having these new symptoms several weeks or even a few months later. And that's kind of this, it used to be called chronic fatigue syndrome.

They now call it myalgic encephalomyelitis or ME/CFS. For those folks, their symptoms do not get better and they may even get worse to the point of disability. And what can hasten that trajectory is trying to push through those symptoms and trying to return to normal, go back to your exercise routine.”

“The disability is so bad because of this, that that's a whole other group who are severely impacted that we have to think about how do we support them, clinically and at home moving forward”

“Folks have experienced this after influenza as well, but it is debilitating fatigue or even flu-like symptoms that crop up after any physical exertion or even mental and emotional exertion. Some people have what's called POTS…”

“So that's a result of your autonomic nervous system having dysfunction and that could be, you know, damage from this ongoing inflammation from the virus. We're still understanding some of kind of those underlying mechanisms as Jay mentioned, but these are really debilitating conditions. And so that's definitely of interest to us, that whole group of folks who have been largely ignored or even dismissed by medical establishment and really not part of public health so much.

We cannot ignore them any longer.”

“…maybe COVID can help raise the profile…what it has allowed, I do think, both in our public health world…to have more conversations, across conversations around the relationships between chronic disease and infectious disease, post-infectious disease.”
 
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@Dakota 15, all these posts are giving me (always cautious) hope for the first time for a long time. They give the impression that all sorts of people are looking at LC seriously and that momentum is building.
 
I think it is a big mistake to conflate fatigue with PEM. They are not the same.

I might be misreading that quote.

That said, I do agree with oldtimer that there does seem to be progress in at least recognition of the problem and how serious it is, and how badly it has been handled until now.
 
2/18/22, Hart2Heart: “Dr. Mike Hart & Dr. Wes Ely”

“Long COVID is really the new public health disaster in society”

“Something happening in the brain which prevents neurons from firing & from people being able to have good executive function and memory”

“The main two areas of neurocognitive dysfunction are executive dysfunction and memory.”

“And then the other disabling thing that people get is this POTS I talked about earlier, P-O-T-S, where their heart races up and down…”

https://podcasts.apple.com/us/podcast/51-dr-mike-hart-and-dr-wes-ely/id1545440546?i=1000625527221
 
5/20/23, GRASP podcast: “Wes Ely: Long Covid”

“We have a $20 million grant with NIH to collect brains and establish a brain repository.

And we're trying to really nail down the disease of long COVID and find out what happened in these mildly ill COVID patients that left them cognitively impaired too.”

“I'm wondering if you could speak to the neuropathology of long COVID.”

“what essentially is going on is that the virus comes in the body, attacks the respiratory epithelium, but then gets systemic. And then once the body acutely takes care of the viral replication, we think that there are viral ghosts which stay on predominantly in the GI tract, but also in other areas of the body, much like the Borrelia might do in Lyme disease, where the spirochete stays around.

And it creates an ongoing antigenic stimulation. And when the body receives this antigenic stimulation over weeks and months, the immune system we think is getting triggered in ways that are not fully defined yet, but in ways that are creating a dysregulation of the immune system. We have a paper coming out in Lancet Respiratory that outlines this beautiful scientific figure.

But essentially think of it like this. What if in the brain the neurons weren't directly infected? But what if the glial cell apparatus of the brain, which are the oligodendrocytes and microglia, which are the support structure for the neurons?

So imagine that the neuron is being held up and kept healthy by the glial cells. But what if the glial cells are attacked by the virus? And we think that they are.

And that over time, the glial health is sacrificed. So that then the glial cells are no longer healthy, and then they can't keep the neurons healthy, so the neurons die indirectly. So this is what we think is going on, is that this dysregulated immune system injures the glial cell apparatus, creates an unhealthy environment for the neurons, the neurons die indirectly, and so the overall patient's brain is actually suffering tremendously.”
 
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9/23/23, SCCM Podcast: 'The Long and Short of Long COVID'

Wes Ely: “...extreme fatigue, which fatigue doesn't really do it justice. These patients experience something so far beyond that. They get completely zapped of any ability to carry on a normal daily life. They refer to it as PEM, post-exertional malaise. But post-exertional malaise is not just a physical catastrophe for them, it's a mental catastrophe too. The brain and the body get so exhausted that they really can't function in their daily life, their jobs, their interactions with human beings.”

“So what's going on? What's happening is that the blood vessels in the brain are having endothelial damage, and we know in COVID that the endothelin has ACE2 receptors. So the virus is attacking those ACE2 receptors, and then we're having a leaky blood brain barrier."

"It's not as much as the virus is getting in and attacking the neurons, but the virus gets in and attacks the glial cells, astrocytes, microglia, et cetera, and those glial cells are what support the neurons. So when the neurons don't have this support structure, think of it as the nurturing environment to keep the neurons healthy and happy, then they go south, they have a tremendous problem, and so the person starts having issues with memory, executive dysfunction, processing speed, all kinds of neurocognitive deficits.”.

“Can we ask you a question about this? Glial cell destruction, is that reversible?:

"Yeah, I love this topic. I was actually very ignorant about this when I first started doing long-term brain dysfunction research after the ICU. And when I was doing my basic science research, I did neutrophil priming. And neutrophils get primed quickly. They dump their azurophilic and basophilic granules quickly. And the whole thing's over within a couple of hours. The microglia in the brain, completely different beast. They can get primed and stay primed for eight weeks, 12 weeks, not a day. And so, when these microglia and astrocytes get primed, they start getting extremely overactive, laying down all kinds of scar tissue, if you want to think about it like that, where, imagine the highway is the bio (?) into the brain. And if the cars, the electoral signals, need to get from one place to another, they can't get there because of downstream axonal injury laid down during this priming process. So, the answer is, yes, this is reversible.”

“They're trying to do things that will help them be the matriarch and patriarch to their family, manage their finances, get directions in a car. And they can't do any of these things because their organizational abilities are extremely thwarted. And that's because of frontal lobe problems. They're also having hippocampal problems, which is memory. We think that the memory and executive dysfunction are tied together very intricately.”

“And there's a lot of stigma associated with that because people are acting like that they're making this up. And I want to say that they are the experts of their illness. They're not making it up. It absolutely is real. And for many years, we kind of denied ME/CFS and fibromyalgia. I think we just have to acknowledge that we don't know everything in medicine.”

“We need well-designed, prospective, random-mouse-controlled trials. Right now, people are doing junk out there. They're trying everything because they're desperate. It's a nightmare out there. And this anecdotal approach is not going to get us the answers we need. So we need NIH-funded, VA-funded, foundational-funded, prospective RCTs of the different things that we think are the key factors in the story of long COVID, the path of pathobiology, which are antivirals for the persistence of virus. We need immuno-modulatory agents that will quell the immune activation and the prolonged inflammation. So we need better science.”
 
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Another US county reinstates face mask mandates

Sonoma County, in San Francisco, is the latest region to reinstate its mask mandate in all medical settings for staff but not visitors.

There are more than 20 hospitals and clinics in the area treating over 480,000 residents and visitors, with the largest being the Santa Rosa Memorial Hospital.

Dr Karen Smith, the county's interim health director, issued the order 'given the rising risk of respiratory virus-related illnesses, such as COVID and flu.'

The order will be in effect throughout the remaining respiratory virus season, from November 18 through April 30.

Despite Dr Smith's concerns, the latest report from the California Department of Public Health reveals that Covid and and influenza activity are 'currently low' in the state and there were no hospital admissions in the week beginning October 28.

Meanwhile, the CDC states in its latest update that 4.8% of the US population have tested positive for active Covid infection.

In reaction to the recent announcement regarding mask wearing in Sonoma, many people have deemed it 'stupid' and a 'joke' on social media.
Click to expand...
Another US county reinstates face mask mandates
 
8/23, The Pathize Health Podcast: "Wes Ely"

"Matt Fitzgerald..was an engineer with Tesla..24 years-old...he now cannot even wash his car. Profound amount of PEM. This was a young, healthy person...just because we haven't found the answer, doesn't mean there isn't one out there"

"We need to be studying the antivrial route, we need to be studying the immunomodulation route..."

https://open.spotify.com/episode/37GRk5pbwLBMe1HnFo0qnJ?si=3d0e31c549cc437f
 
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