@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.”
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.”
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
4/19/22, PolyBio Podcast: “Dr. Wes Ely” “We have to pay attention…testimonial injustice, which is silencing people. And also with epistemic injustice…we will do everything we can to help you.. Right now, I’m here with you.” https://open.spotify.com/episode/4xmTxyilejXJJaf7PB3PbQ?si=EoToeyZ8R0-Dtb_fF0tAWA&t=2493
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.”
