News from the USA, United States of America

@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.”
 
Last edited:
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.”
 
Last edited:
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
 
12/11/22, Living with Long COVID: Dr Wes Ely - Long COVID Validation

“I think, long COVID patients feel like that the medical insiders are dissing them and saying that they're making this stuff up. And, you know, if we take ME/CFS, myalgic encephalomyelitis chronic fatigue syndrome, or long Lyme, you know, I was taught to not believe in this, that these weren't real diseases, that they failed in clinical trials, that we gave them antivirals for EBV and CMV and it didn't work, or for candida infections, they didn't work. So I was brought up to think this was all in people's heads and made up.

And now I realize that over the decades, there's just their entire cohorts of hundreds of thousands of people who have been silenced. And I consider this a form of testimonial injustice. And I'm really all for social justice.

And so if we're going to talk about social justice, then we have to quit silencing people and Long Covid is lighting the fuse to blow this up in terms of, blow up this idea that we can silence other people just because they don't fit into a medical box that medical insiders like me think is cut and dry medicine.”

https://podcasts.apple.com/us/podcast/living-with-long-covid/id1609854872?i=1000589730151
 
From: Dr. Marc-Alexander Fluks

Source: State of California / LegiScan Date: September 22, 2024 URL: https://legiscan.com/CA/text/AB3119/2023

California Assembly Bill 3119 -----------------------------

AB 3119, Low. Physicians and surgeons, nurse practitioners, and physician assistants: continuing medical education: infection-associated chronic conditions.

(...)

Bill Text ---------

The people of the State of California do enact as follows:

SECTION 1. Section 2191.6 is added to the Business and Professions Code, to read:

2191.6. In determining its continuing education requirements, the board shall consider including a course in infection-associated chronic conditions, including, but not limited to, long COVID, as defined by the United States Department of Health and Human Services, myalgic encephalomyelitis, and dysautonomia.

SEC. 2. Section 2454.6 is added to the Business and Professions Code, to read:

2454.6. In determining its continuing education requirements, the board shall consider including a course in infection-associated chronic conditions, including, but not limited to, long COVID, as defined by the United States Department of Health and Human Services, myalgic encephalomyelitis, and dysautonomia.

SEC. 3. Section 2836.5 is added to the Business and Professions Code, to read:

2836.5. In determining its continuing education requirements, the board shall consider including a course in infection-associated chronic conditions, including, but not limited to, long COVID, as defined by the United States Department of Health and Human Services, myalgic encephalomyelitis, and dysautonomia.

SEC. 4. Section 3524.7 is added to the Business and Professions Code, to read:

3524.7. In determining its continuing education requirements, the board shall consider including a course in infection-associated chronic conditions, including, but not limited to, long COVID, as defined by the United States Department of Health and Human Services, myalgic encephalomyelitis, and dysautonomia.
 
9/21, ZDoggMD Show: Improving Recovery & Healing Beyond ICU (w/Dr. Wes Ely)

“I think that we need to realize that there is an entire population of people out there with post-viral syndromes who have been suffering for many years and not listened to, come back to testimonial injustice.

“And I think that testimonial injustice is going to play out anew against long COVID patients.”

“These are people whose lives are devastated…”

“And the people with ME/CFS, chronic fatigue syndrome, myalgic encephalomyelitis, they've been screaming at us for years appropriately because they're so frustrated. And there's a movement underway, a grassroots movement that a lot of leaders are helping.”
 
1/26/21, CHEST Pulse: Lessons About COVID-19 Survivorship: Long COVID

Jenna Totso, Mt. Sinai “what we've seen in that population largely includes post-exertional malaise. We're seeing fatigue significantly out of proportion to exertion…We're seeing manifestations of autonomic dysfunction”

“I think the extraneous symptoms such as, again, post-exertional malaise really is one of the differentiating factors, as well as the symptom exacerbation. So we found that individuals with long COVID, their symptom exacerbation in and of itself is extremely sensitive. And when we are seeing symptom exacerbation, those exacerbations are quite severe.”

“I think the needs of that population have gone unmet for a significant period of time just because it was not something that was on the healthcare radar. I think the bigger health crisis surrounding long-haul….is the need for long-haul COVID patients who are having these genuine symptoms to be acknowledged and cared for within the health system.”

“I think that for those of us on the provider end of things, really understanding that many of their workups are going to come back, not suspecting. Their initial workups, we’re not suspecting what we're seeing in individuals. We definitely - all of our patients and our cohort - have gone through cardiac clearance, have gone through pulmonary clearance, who are coming back and we're sending out to neurology. All of these workups that we would have anticipated to show something - more daunting or more luminous - are actually coming back okay. That really poses the question as to what's going on.”

“Our group has largely, and I think the literature stands to support the need to draw from like diagnoses to better understand interventions. i think that when we think along the lines of conservative management, because again, from a pharmacological standpoint, we have not identified anything that has been successful in addressing it.”
 
11/13/24, New York State Department of Health: ‘Grand Rounds - Unraveling Long COVID Trends and Expert Perspectives’

Moderator:

James V. McDonald, MD, MPH Commissioner of the New York State Department of Health

Special Guest(s):

Geetika Sood, MD, ScM
Amanda Lans, MD, PhD, MS
David Putrino, PhD
Juan Pablo Wisnivesky, MD, DrPH
Alba Azola, MD
Micheal Peluso, MD, MPhil, MHS, DTM&H

 
Last edited:
5/5/24, Long Covid Podcast: Dr. Wes Ely - What is Immuno-modulation & how could it help with Long Covid?

“so now we're setting out to try and understand if that same immunomodulator will improve the lives of people with long Covid.”

“when COVID hit, we started hearing that the people in surviving COVID were having all these brain fog problems.”

“my goal is to improve the lives of people I'll never meet. And what that means is that through research, and through investigations like these trials, that hopefully somebody in India or Australia or Latin America or Inverness can find an answer to their suffering.”

“So I have to admit I'm wrong, learn and recalibrate and redirect. And that's what's brought me into this world of Long Covid research.”

“Never in a million years did I anticipate or even want to study this. But now I view it as such a privilege and an unearned opportunity to contribute. And so that to me is a campaign of human service.”

“…study diseases where it's a prominent public health problem and Long Covid clearly fits that rule. The second rule, though, is really important. It's either answer matters. I do not conduct a study or design a study where it only matters in one direction. So in this case, if the baricitinib, if this JAK-STAT inhibitor, immunomodulator works, then great, we have a new treatment for Long Covid and that's huge.”

“If it doesn't work and we have altered these 15, 20 things in the immune system, which we know this JAK-STAT pathway does, and that doesn't help Long Covid, that's incredibly important to the mechanism by which people get diseased, by which the human body is suffering in Long Covid. And that will hugely advance the field for our understanding of where to go next.”

“Our goal is to move the field forward, whether the immunomodulator works or not, we're gonna provide answers and those answers will then be applicable into the entire umbrella of IACC’s..”

“what we learned is that months later, there's this ongoing problem with the immune system. It's almost like a light switch got turned on and we need that light switch to be turned back off again for the body to rest.”

“And the body needs to rest, but it can't because that immune system is still going until the light switch gets turned off. So what we're studying now is would it be helpful to turn off the light switch of Long Covid, i.e. normalize the immune system, by doing things like affecting interferons and immunoglobulins and all kinds of TNF and interleukins, et cetera.

These things are what drive in Long Covid ongoing cytokine persistence and immune activation and microglial activation in the brain, all kinds of turn cells on that ought not to be on something we call reactive astrocytosis. And we don't know if baricitinib will successfully turn those off and stop Long Covid, but we know that it does work on those systems. We already know the mechanism of this drug will be to dampen and turn down those programs.”

“So it's a very scientifically driven hypothesis to test in this case. And that's why the NIH decided to give us this large grant to do it, to the investigation.”

“we know immunomodulation works for acute Covid. We don't know about chronic long-term Covid, but that's what we're gonna figure out.”

“I think the patient voice is so important and it seems that studies and trials and researchers and doctors are listening more than they were before”
 
9/23/23, 'The Most Promising Drug For Long Covid You've Never Heard Of | With Dr Wes Ely'

'We get funded by the NIH, by the VA, we have currently about $36 million in NiH funding..with our next round of Long COVID money, we'll probably have about $60 million range to do real science to help reduce human suffering."

"This is how it got connected to Long COVID - I started thinking well, all of this is just PICS - it's post-intensive care syndrome which we've been studying for 20 years. And then people started contacting me and here's where I learned I was wrong - I mean I was so wrong - people started contacting me saying I can't think anymore - my brain and body don't work and I was never in the hospital, I got COVID and I was all only mildly ill at my house and I got a little better for two three months then 100 days later - bam, this hit me like a ton of bricks. And I started realizing wow it's not all PICS - post-intensive care syndrome - there's two or three problems going on..."

"As a scientist I've never looked back I was like, this is fascinating area - people are suffering like crazy - it fits in with everything I do about acute problems in a human body that we don't understand - let's care for these people clinically and let's find them scientific answers"

“As we began learning about Long COVID - began realizing - what's happening in the human body is that the virus comes in comes into the respiratory epithelium and it moves, it trashes the respiratory epithelium - a pneumonia occurs - but the virus is also attaching to the Ace 2 receptor, which are on the lining of blood vessels - so your blood vessels have this beautiful endothelium on both sides - and in that endothelium, those cells there is the same Ace 2 receptor - so that and other receptors in the brain are places that the virus is inducing pathology and not only is it inducing pathology during the acute event but something happens to the immune system that essentially turns on a light switch so that the immune system becomes chronically agitated and active and we think there's ongoing antigenic stimulation long after weeks and months after the acute viral illness is gone which leads to Long COVID..."

"..could be viral reactivation, immune reactivation, there's all kinds of ways we're fighting our own self during that time autoimmunity and then there are other theories as well of Long COVID, but one of them at least is this dysregulated autoimmunity and so we think that it might be helpful - this is the hypothesis - the hypothesis is that we will improve Long COVID symptomatology by giving an immunomodulator to people who have active Long COVID.."

"...the primary outcome being the brain recovery and the secondary outcome being cardiovascular outcomes like POTS.."

"We're very sensitive to the ME/CFS community we'll be measuring ME/CFS parameters as well because we know there's a tremendous overlap with ME/CFS...we'll be doing all of this with some of the best immunologists and scientists in the world...I view myself as a public servant of the Long COVID community..."
 
Last edited:
9/7/23, 'How Should Doctors Treat Long Covid? | With Dr Wes Ely'

"some of them have tremendous ongoing endothelial damage with platelet activation and micro clots...another patient who has ongoing immunological disorders and really it's about an activated immune system..."

“There's been a lot of negative press right now about RECOVER…I am not myself part of the RECOVER Network - I am taking this REVERSE-LC Study to a different section of the NIH - and that might make us more nimble and more rapidly able to get the trial underway and completed - but I cannot speak for it. I don't want to talk negatively about my colleagues doing different sorts of trials but all of us are aware that people need help yesterday and if we're really going to be their servants - we need to get rid of the regulatory mumbo jumbo that is clogging up these pipes open the pipes up and get the water flowing so we can get answers..”

"Long COVID has woken me up to the error of my ways...I want to change medicine to say let's pay attention to patients who do not have a voice.."

"I can promise you this - I will not leave you - I will not abandon you...to find you some answers..."

"I think there's so much to learn from ME/CFS..."

"I'm sorry for your suffering - I don't know what you're going through - I can't pretend to understand it - don't give up hope. I appreciate you more than you know. I want us all to do a better job for you to make your life have less suffering, more hope, and a better future."
 
Last edited:
7/5/24, UniteToFight: Prof. E. Wesley Ely: Immunomodulation in Long Covid (Day 1, Block 4)

"...we were able to receive a fourth percentile score from NIH that will now fund the trial...the 550 patients enrolled in this trial will be reimbursed.."

"The primary objective is to see if the neuropsychological impairment in Long COVID will improve with this JAK-STAT Inhibitor...."

"It may be that the immune dysregulation that occurs in Long COVID, will be calmed down by this daily receipt of baricitinib...it's as if a light switch was turned on by acute COVID, all of us are now trying to investigate what the safest way to turn off that light switch without injuring people in the process...."

"We are trying to do this as quickly as we can"

"We are bringing mercy into the situation of Long COVID & ME/CFS...we have a social worker that we hired..sits outside my office every day, spends the entire day helping Long COVID patients and their families find jobs, disability programs, help them avoid self-harm, housing....we believe that RVLC is part of an overall project of humanism to try to bring the level of dignity and elevate it for all of you who are suffering from Long COVID..."
 
Last edited:
Baricitinib trial for LC website just launched (I believe, but may have been up for a bit and I just hadn’t seen). As a reminder this is a large, phase 3 trial funded by the NIH (but outside of RECOVER). Baricitinib is approved for rheumatoid arthritis, is an immunomodulator, and one of the few drugs effective for acute Covid infection (it's used in hospitalized patients).

'Reverse LC - Federally funded by the NIH'

'People living with Long COVID are looking for answers'

'REVERSE-LC is a study to see if a drug called Baricitinib can help'

'Our trial was graded by leaders at the Patient-Led Research Collaborative (PLRC) (Hannah Davis, Gina Assaf), ME-Action (Jaime Seltzer), and National Academy of Medicine Long COVID testifier (Kelly Sealey). This scorecard was created by Patient-Led Research Collaborative'

'We are grateful for the input from so many who shared their wisdom and advice to make this NIH-funded trial the best it can be. Reverse-LC is a campaign of human service and scientific discovery.'

'The hypothesis we are testing is that the immunomodulatory effects of this medication will help reduce the brain and cardiovascular problems patients suffer in Long COVID.'
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom