Sharing some excerpts from a new podcast titled "The Long COVID Clinical Podcast" (mods hopefully this is okay to share here, let me know if any issues or concerns) This podcast is hosted by Christopher Chiu (Ohio State), Andrew Scahmess (Ohio State), Tiffany Walker (Emory University, RECOVER PI), Anita Chopra (Univ. of Washington) & Aaron Friedberg (Ohio State). They also have guests join them. Episode 1 - 11/7/24 - The Long COVID Clinical Podcast: “Meet the Hosts and Their Stories” Excerpts: “We also know that you will run into Long COVID patients in your practice, and that they deserve good compassionate medical care…” Chris Chui, OSU: “I started seeing patients who had symptoms of Long COVID…I really felt helpless. There was not enough information, and my inability to understand this condition, let alone offer any help, was frustrating in a way…I knew I had to find out more…” “…the patients in the clinic captured my heart. What they have been through in terms of searching for answers for their condition…the way that their symptoms can be ignored and they can be put off, and just their determination to find answers really is extremely moving.” “…the shock of just patient after patient, all having this strikingly similar syndromic feeling set of symptoms, and just being tremendously impacted by these symptoms in their daily lives…” “I remember actually my medical assistant, who I worked closely with, cried that day just working with the patients & hearing their stories….was really just in awe of what they were experiencing…just wanted to be able to know more about that, to be able to meaningfully help..” “it was hard to provide guidance..what we found was one of the greatest things we could do is just provide validation of their symptoms, because a lot of these patients. were really being dismissed by the medical community just because a lot of us didn't know what was going on” “…some of these are individuals that had no underlying comorbidities, who were really healthy, and just out of nowhere have really debilitating symptoms to the point where they just can't function” “Something that Aaron said really struck me was that his staff or his medical assistant cried, and I had a similar experience as well. The first time I saw patients and I saw how their world was turned upside down. It was very humbling for me, but at the same time, it also motivated me to go searching for things that could help them. And one of those inspirations was to learn more.” “And we found that we have to really pivot our educational efforts on this, on raising awareness and on improving education related to long COVID.” “The first thing as a clinician that I learned was that…there's a lot that we don't know and that we need to find out.” “There's also question of immune dysregulation. We'll see abnormalities in T and B cell subsets, and whether or not that's just a response to that viral reservoir, or if that's just a dysregulated loop that's kicked off, that has nothing to do with the persistent reservoir. And then I think also the mitochondrial abnormalities that we're seeing with decreased oxygen extraction in peripheral tissues, mitochondrial dysfunction. my question is, is it the chicken or egg, are they all contributing? What do we need to target to be able to reset the system?” “we just put in to do a research study to do nerve biopsies, and just see how prevalent really small fiber neuropathy is in the patients with these symptoms. And even if you look at the CNS symptoms, the hypothalamus doesn't work if it's not getting good signaling from the periphery. That's the basic purpose of the hypothalamus is to take sensory signals and make them into memories. And if those sensory signals are messed up, then neural processing at the central level is messed up. So yeah, I just think there's a lot of really interesting and plausible theories out there. And maybe in the course of this podcast, we'll be able to see which ones emerge.”
Episode 2 - 11/7/24, The Long COVID Clinical Podcast: “Diagnosis” with guest Dr. Fernando Carnavali, Mount Sinai “I think a lot of physicians are understanding that this is an entity, and that we really need to equip ourselves and empower ourselves to deal with it..”
Episode 3 - 11/7/24, The Long COVID Clinical Podcast: “Dysautonomia” with Dr. Cyndya Shibao, Vanderbilt Autonomic Center Dr. Shibao - “If I were to speculate why patients with long COVID have POTS..possible that there is persistent inflammation…can cause a reactive, increasing sympathetic activity” “POTS itself is a post-viral illness. So a lot of our patients that develop POTS, they have this history of having a viral-like illness. So it's not surprising to me that after this pandemic…these POTS patients..occurred after a viral infection, with a huge immune response.” “…our study will be the first to test this hypothesis in long COVID POTS patients. And this is mainly driven by our initial observation, the vagus nerve function was depressed in these patients.” “I think long COVID patients that have been suffering for so long, especially this really disabled population with dysautonomia symptoms, are very much looking forward the opportunity to participate in these trials and learn from them.” “we put together a grant that we submitted to the Medical Heart Association with the goal of trying to understand a little bit more about what is the impact of this decreased vagal function in these patients and how it impacts the symptoms or causes the symptoms”
Episode 4 - 11/7/24, The Long COVID Clinical Podcast: “Post-exertional Malaise and Chronic Fatigue" (several mentions of ME) Dr. Anita Chopra, UW & Dr. Andrew Schamess, OSU: “There are clear metabolic changes and changes in energy metabolism and muscles after exercise…” “And in addition to some of the metabolic changes, so decreased VO2 max and peak power output, and some of the changes in their cardiopulmonary system, they also showed through these muscle biopsies that there was a lot of inflammation in the muscles. And they showed a lot of exercise-induced myopathy and even infiltration of the muscles with amyloid deposits.” “I'll start by saying I find it very unfortunate that we, as medical professionals, have oftentimes steered patients wrong when they present with these symptoms. And so there's a lot of distrust of the advice that physicians give patients who are experiencing PEM..” “..81 percent of our patients indicated in our clinic that they have not been able to get back to work or get back to their usual work because of their long COVID symptoms. And so this is clearly affecting so many patients with long COVID…” “It's frustrating that patients aren't being heard and that they don't have that experience of being believed by some of their providers. But I think the goal of getting education out to clinicians is to try to reduce this and improve the experience that the patients have…”
Episode 5 - 12/2/24. The Long COVID Clinical Podcast: "Brain Fog" with Dr. Susan Bowman-Burpee (OSU) and Dr. Katlyn Schultz (OSU) Dr. Susan Bowman-Burpee: “..sluggish thinking, difficulty processing information..many of my patients tell me there's like a film over their reality. They have difficulty with multitasking.” “The most important piece of this is reassurance, providing support and validation of his symptoms. He's not alone. I try to normalize what he's experiencing, and oftentimes my patients will tell me, nobody understands. This is invisible.” “So we're noting the common symptoms in terms of cognitive changes that they've noticed, changes in our attention, our executive functioning, and memory. More specific to verbal memory than many other types of memory are usually impacted.” “I can only imagine what you're experiencing. And I'm not giving up on you. I'm not giving up. There are still, there's these new studies coming out. There's new research. There's new understanding. You're not alone”
Bluesky post from host (Dr. Chiu) on the podcast series: https://bsky.app/profile/cjchiu.bsky.social/post/3lar73hlln22b
