News from the USA, United States of America

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

 
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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..."
 
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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."
 
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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..."
 
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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.'
 
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9/23/23, 'Life in the ICU with Critical Care Pulmonologist Dr. Wes Ely'

Ely: "A lot of the patients who get this rapidly acquired brain dysfunction now are long COVID patients who never got sick. They were mildly sick with COVID and then three to six months later, they have this, this massive onset of cognitive impairment that looks a lot like a dementia."

"I think that those patients who go through it...that's who's going to drive medicine society to do a better job of fixing things."

"We are now doing a lot of research in Long COVID to help people find answers and to pick up the pieces of their life."
 
1/27/22, 'Rebuilding What We've Lost in Covid: A Perspective from the ICU'

Ely: ‘So this post-intensive care syndrome, coupled with long COVID by the way, is a very real, life-altering public health problem for these patients..'

"We have a public health problem on our hands. And it's of a very large magnitude, in that millions of people are going to have PICS and long COVID or both.."

"We need to start calling it what it is, so that people can feel some identity of what they're carrying around with them. And then in clinics, we're gonna have to equip our primary care workforce to be reimbursed well, to have billable time for these people because they're gonna require talking time. I think we have to rethink this issue of not reimbursing people for the amount of time they spend with these patients. Because without answers to how to cure long COVID, what do we have to offer? Ourselves. And the fact that we're willing to listen, and I won't abandon you, a compassionate statement. I don't know what long COVID is just yet, in you. I don't understand your suffering, but I won't leave you. And that takes time. And so the clinician is gonna have to reimburse for that."
 
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(Assuming many here have already seen previously but for advocacy purposes I thought would be wise to share for sight. I also acknowledge that Hillary doesn’t come without controversy in the community historically, but still felt relevant to leave here)

5/7/22, RFK Jr Podcast: “Biomedical Research Gone Awry with Hillary Johnson”

“People have no concept whatsoever of how terrible this disease is (ME).”

“I've watched for literally decades now, the CDC and the NIH, especially the NIH…They've exerted a tremendous, tremendous desire to control the information about this disease..”

“That is shocking and appalling to think that one out of every 100 people is suffering from this absolutely devastating, disabling disease”

“Anything under $10 million or $15 million at NIH is considered fairy dust. Literally, those are rounding up numbers. That's how small the money is.”

“This is a chronic problem because NIH has a budget of $42 billion a year.”

(RFK) “…the medical system tortures people who have this diagnosis of gaslighting them, of dismissing them, of running them, making them pariahs. And these people were enduring, mainly women, this terrible, terrible suffering. And it just compounds it. We need to mention that.”
 
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Maybe not so much news as interesting because it was posted as news, and then what happened. An article was posted 2 days ago on the /r/news sub-reddit about the growing evidence of COVID's harm on the brain, significant drops in IQ and so on.

The thread is filled with people saying they're noticing it personally, and around them. Loads and loads of them. But in less than 24 hours the thread was locked by moderators. I haven't seen an explanation. This forum is very general and doesn't have rules against health news or anything like this. Discussion was definitely civil and on topic. It's hard to see why it was locked.

But the sheer amount of comments is very telling. With basically no minimizing ones I can see. That usually only happens when the discussion is wholly organic, with too many real accounts posting for actors trying to steer things one way or another. It's a generic grand audience sub, basically about as unlikely to be biased in favor or against something like it. Brain fog is what's mostly discussed. I didn't see much going on the other issues with COVID, definitely not a discussion steered by several long haulers trying to raise awareness, which happens sometimes on threads with few comments that allow a few denying voices to dominate.

Mounting research shows that COVID-19 leaves its mark on the brain, including significant drops in IQ scores
 
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