The Butterfly Pavilion Podcast

The Long Covid Kaleidoscope: A Conversation With David Putrino

• Ty Godwin • Season 2 • Episode 3

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Ty flies solo on this episode in an interview with Long Covid expert, David Putrino.

David is the Director of Rehab Innovation at Mount Sinai New York City and Assoc. Prof. at Mount Sinai Rehab for Icahn Mount Sinai and one of Seeking Boston's (Ty's) Long Covid super heroes--specifically "Batman."

We cover a range of topics concurrent with Long Covid Awareness Month (March '26) including the multiple hats Putrino wears, and the confluence of long Covid (and cancer) symptoms that Ty refers to as a Long Covid Kaleidoscope with different (symptom) prisms on a given day, hour, week, and month in the life of long Covid. 

A few links we referenced in the episode (we weren't able to cover all the promising trials that David is involved with.)

Interview with David Putrino hosted by Julie Armstrong as part of Long Covid Awareness Week (longer discussion on trials and treatments for long Covid.)

"Where do We Stand"

Long Covid Provider Manual

Find Ty's Long Covid Parody videos on x

and on YouTube; https://www.youtube.com/@SeekingBoston

Send us Fan Mail

Connect with us

SPEAKER_02

The manager there was very extended team and she said analytics here planned or something. She said it was kind of hard to listen to. Of course, it was pretty heavy laying in the stage for cancer news down in the first podcast. But she said it was inspirational and she said your daughter's amazing, which I would have to agree. Now let's get into this month's episode. So I've got a multitask here, which is hard for a person with low COVID. Anyway, I'm pleased to have uh Dr. David Petrino with us today on the Butterfly Pavilion podcast. He's currently the director of rehabilitation innovation at Mount Sinai Health System and a professor in the Department of Rehabilitation and Human Performance at the Icon School of Medicine at Mount Sinai. David's research has been featured on ABC, Sports Illustrated, Wall Street Journal, the BBC, Wired magazine, and he also made my long COVID superhero list as Batman. So we're pleased to have uh Petrino slash Batman uh with us today. Um maybe as a as a in that as a word that's a word salad for your title. Um I mentioned Nikki won't be joining us today. She's uh busy with a new job, so she's here in spirit. Um you wear a lot of hats. So looking at that title, uh, can you kind of explain um your day job? You know, you work with poly, you know, you're involved with polybio, you do a lot of things with other researchers. Uh so you know, how can you explain your world or your your day in a life?

SPEAKER_00

Yeah. Um so you know, the the best way to think about my job is um when when I started at Mount Sinai, the the the sort of general directive that I was given was in the United States, if there is a thing, an intervention, uh a medicine, whatever that could be helping a patient, the general amount of time it takes to get from that first successful trial to the point where it's actually in the wild helping people is 14 to 17 years. And my directive was in the rehab world, let's stretch the. That's a uh that's a scary, that's a scary number. It is a scary number, yeah.

SPEAKER_02

For people you know impacted. Absolutely. I'm sorry, go ahead.

SPEAKER_00

No, no, I mean you're right. It's it's it's a it's a number that I usually when I when I give it, you get a lot of gasps in the room that like there could be some life-saving treatment or some amazing therapy that really just because of bureaucratic, you know, inertia is being held back from patients. Um, and so our our mission has always been how do we get these things from bench to bedside as quickly as possible? How do we uh bypass all of this inertia in a way that is still responsible and still safe, but finding which rules that we can break and breaking those rules to make sure that patients get access to things as quickly as possible. And we started out with one center that was focused on neurological injury. So we work with spinal cord injury, traumatic brain injury, stroke. Um, and pretty quickly we were, you know, it it was it was quite clear that the approach was working well. We were helping a lot of patients, and um, you know, as of 2026, we have six different centers, and each center has its own specific clinical focus. And one of those centers is called the Cohen Center for Recovery from Complex Chronic Illness, um, which is focused on infection-associated chronic conditions and illnesses, uh, like long COVID, MECFS, chronic tick and vector-borne illness, hypermobility, uh, you know, uh joint hypermobility spectrum disorders, uh, fibromyalgia, etc. Um, a day in the life for me is uh, you know, I really just run around trying to make sure that the lights stay on in all of those centers. Um and so, you know, uh one day I might be working with athletes, uh trying to do something that's not been done before. Another day I'll be working with people with long COVID, another day I'll be working with someone who has just had, you know, a very severe stroke, and we're trying to wake them up out of a disordered consciousness state. So I get a lot of diversity in the work that I do, which I feel is very helpful for me because it keeps me creative and it keeps me close to the problems that I'm trying to solve. Um but I also have just a wonderful team that keeps me sane and does the hard work.

SPEAKER_02

Great. So um I I should uh I should back up a half a step. Uh, you know, the Butterfly Pavilion we started podcast, we started as a uh a bit of a journal for my journey. Um the the that is a combination of both uh states for cancer and long COVID. So I uh joke before we hit the record button. I've I've been engaged with uh David Petrino, uh our guest, uh for years, literally years now. Um I think that's the beauty of uh I still call it Twitter, where you can engage with experts and you have access to uh papers and treatments and ideas. Uh so I think it's a it's a wonderful community. It can go dark, it can go ugly. We can maybe talk about that. Um the second half of that first question, uh, so uh maybe you could also explain Polybio. And then I know you work with Van Elzeker and Akiko, who we've we've met. Um, yeah, so how how does talk a bit about Polybio and perhaps how you engage with other researchers?

SPEAKER_00

Yeah, you know, um uh again, across all of the centers that I work in, we're always interested in finding like-minded people. You know, the status quo as a researcher is that you go to the NIH, the National Institutes for Health, you write grants. Um, on average, it takes you two or three goes to get a grant, which means three or four years on average to actually get something funded. Um, and they tend to be very sort of slow, safe grants. So you get a grant, you're good for five years, you do very incremental research, and then you sort of like rinse and repeat for the course of your career. Um and uh our team, because we we like innovation to move a lot faster than that, our team uh tries to seek out people who are moving at the same pace as us. Uh so when we entered into this infection-associated chronic condition and illnesses space, um one of the first people I met was Amy Perole, uh total force of nature. Uh, and she sort of came in and was like, we're gonna do this and we're gonna do that. She's also a superhero of mine. We she is, uh, yeah, in every sense of the word. Right. And uh we were like, okay, Polybio is a group that we want to work with. Um, and in fact, I went as far as to say, Amy, can you be our scientific director? Because I can only do so much running around between six centers, but I need someone who has the same drive and has the same sense of urgency that we do, directing a lot of the scientific questions. And also on top of that, you know, Amy's a microbiologist. I'm a physical therapist with a PhD in neuroscience, you know, uh I can only do too much when we're talking about pathogens, pathogen persistence. Um, I've been drinking from the fire hose in terms of learning, but someone with Amy's expertise, when we really think that a lot of these illnesses have such an important, you know, pathogens have such an important role to play, a microbiologist is the right person to sit in that hot seat. Um and then similarly with Akiko, you know, um Akiko actually cold emailed me out of the blue um in in sort of peak first wave COVID um when we started seeing long COVID patients at Mount Sinai. And um and you know, I I immediately sort of latched onto Akiko like a life raft because again, I was like, well, what the hell do I know about the immune system? You know, uh I have no business evaluating the immune system, but I really know that there is an immune component going on here. So rather than put the blinkers on and ignore the immune component, let's find someone who has a stellar track record who also moves fast because Akiko moves fast and um you know is is willing to work with me. So um that was really how we started to all collaborate. And then I always have to shout out, you know, Polybio. I I frequently am heard uh, you know, superheroes are your thing, uh, Typha. I'm I'm frequently heard calling uh Amy Prohl the Oppenheimer of Long COVID because she the long the long COVID sort of collaborative network that she's built through Polybio is just some of the most talented people who uh aren't necessarily the most you know famous and and glamorous people in in the research world, although some of them absolutely are, but some of them are people like me, you know, but they're just effective and they're fast and they're uh again feeling that urgency to move move the needle. Right, right.

SPEAKER_02

Yeah, I uh subscribe to the uh It Takes a Village uh approach, and um I've uh taken some heat on some of my long COVID heroes, and you know, uh, and we'll get into some of the community dynamics, but uh I personally think yeah, we want everyone we can working on this problem and the brightest people in the world working on this problem. So the Van Elzekers and and uh Amy and uh Kiko and yourself uh obviously. So uh because this is something that affects you know 30 million Americans, um, and you know there is no uh the the biomarkers are vague, the biomarkers are coming out. I've actually you know uh got the Bruce Patterson biomarkers through uh Rhythm. Um that was part of you know my final a you've got lone COVID. Um but anyway, for for people that may not um you know walk walk your walk every day, every week, I asked the same question to a Kiko. How would you explain you're at a dinner party and someone doesn't know what long COVID is, or there's the person at the table that you know, whether it's politics or you know, they they're ingrained with anybody that's sick, they automatically go to it's the jab. What it what is the uh prevalence of long COVID and how would you explain what long COVID is to to those people?

SPEAKER_00

Yeah, so um what I usually explain um you know in a situation like that is I just talk about the fact that there appears to be a subset of individuals who after a COVID infection fail to recover from that COVID infection. They fail to return to their baseline level of health after that COVID infection. And what we now know is that this new virus, this SARS-CoV-2 virus, has a number of different ways where it can significantly impact someone's physiology to stop them from fully recovering.

SPEAKER_02

Um, so I think physiology, if I may interrupt, physiology is a key word there versus psychology. Psychology, there's so many people that think it's in your head and yada yada yada. Um I'm sorry, but please, you know, you're you're a hundred percent correct.

SPEAKER_00

So when when I'm asked about it, because I am asked about it in in different settings, people are like, oh, you do like long COVID stuff, is that real? You know? Um and and so I I then tend to usually go on and say, like, we run a clinic that has seen several thousand people, uh, we see people from all walks of life, uh, all political leanings. Uh, you know, it doesn't actually seem to matter where where in life you come from, you can still get long COVID. Um and uh and then I also go on to, you know, uh when when people say, well, it's just the jab, I I do tell them, look, we're one of the few labs that has actually published work on vaccine injury. Uh, and we're actively looking into vaccine injury and we believe in vaccine injury, but we also have a number of people who were sick before the vaccines that uh that we treat. And we also know that there's just a far greater number of individuals uh who there's the dog, there's the dogs up at the butterfly pavilion at the door.

SPEAKER_02

Uh frequent guests. Lovely.

SPEAKER_00

I think mom must mom must be home. Um so I I I just go on to explain that um, you know, we don't need to create these polarizing situations where everything is one thing and nothing is the other thing. Like we don't need to choose teams here. This is not a team sport. This is, you know, uh this is trying to understand physiology, this is trying to understand pathology, and there's room for both. Um, and and you know, honestly, obviously there are some extremists out there in the world, um, but most people in the real world, when you're having a real world conversation and you validate their point of view. So if someone says, I think it's all the jabs, and you say, Listen, I can understand where you're coming from, but we see both, and you know, and I validate that vaccine injury does exist. Most of the time they're like, Well, that's really cool that you're also looking into vaccine injury. It's it I I very rarely get like, no, it's all the jabs. It's like, no, it's, you know, like I agree with you, some people have had this adverse event, but also some people got COVID verifiably and had never had a vaccine and then never recovered, you know.

SPEAKER_02

Yeah, I I uh I think you're you're probably somewhat aware of my story. I was a uh what they call a first waiver uh with a mild onset. So I got I got sick in January of 2020 and was traveling the globe. So I hit uh airports in Munich, Cape Town, uh, Seattle, um, and came home. Actually, it was on the trip, I started to feel feel ill. Um came home and just felt you know like a common garden variety virus. But within two months, I you know, as an active marathon runner, within two months I couldn't run a mile. And uh trying to work through that illness, I had a hundred-day fever in 2020. And a lot of people catch me with that. They were like, oh, you had a hundred-degree fever? I'm like, yes, I did for a hundred days. Um so and that snowballed into a long, a laundry list of of uh physiological damage as we discussed. Um but uh appreciate you you sharing that you know uh elevator discussion or cocktail party discussion. Um we'll get into some of the uh details of of trials and treatments. Uh I listened to a couple of your interviews last week, but uh we are uh off the heels of Long COVID awareness day, which was March 15th, Long COVID awareness week, and all of March is Long COVID awareness month. Um how was your week? I know you had a couple of interviews. Um, you know, uh what was your response to the week? Did it feel different than the than the than the last year? Uh, because I think we've had it for a few years now.

SPEAKER_00

Yeah. You know um I I know that it's a really uh I want to say this sensitively because I know that it's a really tough time for a lot of people, because um, you know, something that we notice uh in in our clinic is is um around holiday times, we often get the most frantic messages. Um and and I think it's just because it's such a painful reminder. It's like, okay, it's another Easter, it's another Christmas, it's another Passover, it's another event where I'm still sick and I don't have answers. And and I feel like long COVID awareness day, week, month feels that way to many people who are suffering with long COVID. Um uh and and I really feel that. Um and we get a lot of messages over this period of time. But uh for me, every uh, you know, I I suppose I'm I'm cursed with the the sort of statistics in my head of every year uh when I'm reflecting on what we've learned and how our clinical practice has changed, uh I feel hopeful because we are incrementally getting more people better. We are, you know, and and and we are rolling out treatments that are starting to show clinical trial results that are more encouraging. And we're doing clinical research that is really sort of elucidating things that could be a biomarker or at least uh helping us understand the pathobiology, uh, you know, what's going wrong in the body a little bit more deeply and better each year. And um, and I and I don't think that, you know, I I I frequently say as well, like if you if if someone tells you that they've found the magic bullet that cures all long COVID, that they're selling the magic, they're selling the magic bullets, you know. Um I think that the solution is going to be incremental, you know. Um, and it's also what I I sort of educate on when I'm out there teaching PCPs and and things like that about our clinic and and long COVID management. It's it is an incremental uh approach, you know. Uh uh, you know, one day you're you don't know what you're doing and you can only maybe recommend fluids and uh and uh you know vagus nerve stimulation. The next day you learn about antihistamines and now you can help five more percent of your patients. And then the next day you learn about Ivabridine and other POTS medications, and you can help another 2%. The next day you learn about the PyGen protocol, and that's another 2% helped. Um so it is an incremental journey, um, which is uh hellishly frustrating for everyone who feels the urgency. Umscape, yeah. That's appropriate. Um, but every year I I think about, you know, and this is also why we started to build out the manual, is uh we wanted to be able to update people on, okay, here's all this new stuff that you can do. Um and this is how it's different from six months ago. Um and and I really feel that again, this this year, you know, we're coming off the back of uh two successful small trials uh that we're moving into larger pivotal clinical trials. Um and um and so I'm feeling encouraged.

SPEAKER_02

Yeah, that's um yeah, my quick comment on the the day, uh Long Covid Awareness Day, I uh hopped onto uh I think Becky's space on on X. Um it can be um well depressing is an understatement. Uh because there's just absolutely heartbreaking stories. We're now starting to lose people, um uh literally die from this, or one of those people. Pillars, if you will, um, because just kind of recapping what you said, it is not one symptom. Uh when you say you've got lung COVID, so it's uh equating it to you go into the ER and you got a broken leg, that's very specific, and you you got a very specific playbook to that. Lung COVID is a is a uh uh matrix uh or kaleidoscope of symptoms. And uh I think what you're saying is we're starting to maybe attack some of those symptoms. Um and and hopefully we get to a point where you know we can either prevent or treat you know what is what is attacking the entire body because it attacks it's it's neuroinflammation, it's uh mitochondria damage, endothelial damage, uh uh vasculitis. You know, it's it's a long list, not to mention the crippling fatigue, um, and then also the cognitive piece. Um, you mentioned the manual, so that's maybe a good uh jump point to the manual you released. Um you talk a little bit about uh that manual. I also saw that uh uh Rhythm and Patient led also came out with a similar cookbook, if you will. Um can you speak to that?

SPEAKER_00

Yeah, yeah. You know, um we uh we wanted to release something that was inclusive of as many infection-associated chronic conditions and illnesses as possible. That really just gave a roadmap for what we do in our clinic. And, you know, we have this sort of like disclaimer up the front of like, we're not trying to sort of like say that we're the be-all and end all. We're not trying to say that we're the only voice to listen to, but we are saying that we've had enough questions about how we run our clinic that we were like, here it is. We we, you know, um, we don't want to be a destination clinic. We we want to be, you know, we want to be uh a sort of center that other people can learn from freely and easily and openly, um, so that centers can open up all across the United States that provide skilled, compassionate, informed care on these conditions. And so that was the impetus for releasing the manual and of course releasing it freely. Um and uh and so, you know, what we tried to do was uh uh one portion of the manual is just explaining the different diagnoses and how we go about our providers in the clinic go about diagnosing different infection-associated chronic conditions and illnesses, so the diagnostic guidelines that that we use to make specific diagnoses. Um and then we sort of talk about look, there's so many different symptoms. Uh, you know, kaleidoscope is a really good descriptor of like uh, you know, if you just look at publications on long COVID, the 200 plus symptoms associated with long COVID. Um, so rather than trying to, you know, rather than trying to answer a question of how do you treat fatigue? Um, which when you understand how diverse the presentations of long COVID can be, asking that question kind of doesn't make sense because are you experiencing fatigue because you have uh an autoimmune condition? Are you experiencing fatigue because you're not sleeping? Are you experiencing fatigue because of autonomic or mitochondrial problems? So we tried to sort of collapse many of these symptoms into how do we assess for what might be driving those symptoms? So, how do we assess for mitochondrial dysfunction? How do we assess for autonomic dysfunction? How do we assess for autoimmunity, vascular problems, etc.? And we put that into the manual of like, again, not this is the fundamental way of doing it, but this is how we do it. These are the blood tests that we order, you know, that this is what we do. And then if they come back positive, what do we do about it? This is our first line, second line, third line. Um, and so we're trying to make it as paint by numbers as possible, uh, in an evidence-based way. So everything that we have there has references associated with it. Um uh that that really helps providers who maybe don't have a roadmap to just have a roadmap, you know, and uh seeing the patient-led rhythm uh work as well, which is uh, you know, phenomenal. Um uh I really like the way that they've done things as well. Um, we uh we work with rhythm and patient-led a lot. So um always appreciate everything that they're bringing to the table as well.

SPEAKER_02

Yeah, I uh uh I also like the the term kaleidoscope because you pick it up at you know a given morning and you turn it in those prisms are different. So um I may have one day where I'm having severe fatigue. I may have a day where I'm feeling the flu. I've got days where out of the blue, I've got uh you know, shortness of breath, and it's it's uh for those out listeners out there, it's not a panic attack. Uh I could be calm as could be, and you know, my my pulse ox drops into you know low 90s, sometimes into the high 80s, close to what my doctor says. Well, you go to the ER when it drops below a certain point. So, so it is a kaleidoscope. It's called a provider manual. Are you seeing that it also could be you know something uh for the patient that they could you know drill down into an area um that they've got small fiber neuropathy and uh they can go into their doc and maybe have a more educated conversation? So is it for patient and doctor, I guess? Yeah.

SPEAKER_00

We we definitely wanted um, you know, we called it a provider manual because the the intention behind the document was if you were a provider who wanted to build your own long COVID clinic, here it is. This is the manual that you can follow and you can have a self-sustainable long COVID clinic. Because, like even in the back, we sort of use we share all the billing codes that we use to make sure that insurance covers the interventions that we're uh recommending.

SPEAKER_02

Right. Again, to interject, I mean, long COVID clinics, there's there's discussion of some long COVID clinic shutting down. Uh, I don't want to pick on a state uh because I'll pick the wrong one where there happens to be a long COVID clinic, but it's not ubiquitous by any standpoint. Um, you know, so it it's hard for somebody you know in a in a small state without a clinic to get to New York City.

unknown

Yeah.

SPEAKER_02

Um I I actually work with rhythm, uh still my provider uh of record. Um obviously I'm chasing cancer. It's kind of like you got a broken leg, but then you're profusely bleeding out of this other area. Well, I I've got cancer, so right now it's it's uh a priority, but we're still you know trying to treat you know symptoms, if you will. Um on the manual, uh so thank you for that. Um on the manual, I I commend you because there was some language that around uh post-exertion malaise, or or you can, you know, it was interpreted as you can exercise your way out of long COVID. Um you you came out very quickly with you know a clarification in the manual. Um maybe you could speak just on you know that how that experience went down, but also specifically, you know, the exercise component. You know, I I do hear very small numbers of people that that have gotten better um that can now you know go hiking in or whatever, but um maybe you could talk about that that very specific area of uh exercise and PEM.

SPEAKER_00

No, absolutely. I mean, that was a um uh and you know, I'll I'll I'll complete two things here because you know, I I I think sometimes um these are things that the community needs to hear as well. Um uh there are ways to provide feedback and there are ways to not provide feedback. Um, you know, and and I don't say it in terms of uh wanting to protect my precious little feelings, but I do say it in terms of actually the person who authored that section is a person who lives with an infection-associated complex chronic illness, is a DPT, um, and uh which is a doctor of physical therapy and actively treats many, many people uh who have long COVID MECFS and others, uh, you know, hypermobile L as Download syndrome. Um, so it was written from a point of view of deep empathy uh as well as extraordinary clinical knowledge. Um and I do understand that the language was ambiguous. Uh and and obviously we said, okay, we can understand where a misunderstanding is happening, and we can understand the stakes of not wanting the wrong person to misunderstand this language. But I think it's also important for the community to sort of uh internalize that, like a human being is on the other side of this, you know, a human being actually in this case who has the lived experience because around 40% of our providers in our clinic uh or our staff in our clinic have lived experience of IACCI. And that's a very intentional uh hiring process that we go through because we want that lived experience um in our clinic. So um, you know, what we're what we're trying to get to with the role of exercise and the role of, I mean again, symptom titrated uh uh symptom titrated uh physical activity is that uh first and foremost, uh when some people have pots, and if I can get slightly technical, if you were to do a full autonomic suite evaluation on you know a thousand people with long COVID, meaning uh tilt table tests, so they they get on this div this contraption that has the pine. I've had that. Pops them up and down. Um, we're measur at the same time we're measuring how much you're sweating, we're measuring what your blood pressure is doing, what your heart rate is doing, et cetera. Um if you do that sort of autonomic suite assessment on a thousand people with long COVID, the literature tells us that probably 700 will test positive for disordinomia broadly. They will meet some sort of criterion for being diagnosed with it with a dysordinomia. Um, if you zero in on that, probably around 20% of that 700 people, so maybe 140 people, um, will have what we call significant cardiovagal dysfunction, which means that their blood pressure is actually kind of okay. Uh, their blood pressure doesn't move around all that much, but their heart rate really does fluctuate quite a bit. The literature tells us that that sort of subset of the subset, they're the folks who are going to actually tolerate exercise okay. And they're the folks, and believe me, they they exist, uh, who are going to tell you, but actually, exercise really helps me, you know, like um you know, and and you're you're online, possibly chronically online, as much as I am. And you often see this when the debate happens, right? You see this, like there's a whole bunch of people who are like, you know, don't say the word exercise and avoid, you know, like we need to avoid exercise. And then there'll be one person that pops up and is like, actually, exercise really helped me. And, you know, I'm sorry to say that, but you know, that's my my lived experience. Um, and so what we're starting to see in the literature, and what we're starting to see in our own clinic as well, is that's those are those folks, those those people who have cardiovagal dysfunction and nothing else, which we can identify with the tilt table test by looking at the way that their heart rate changes, but not their blood pressure during certain provocation tests, those are the folks who are most likely to be that person in the Twitter thread who says, but but but exercise is really helpful for me.

SPEAKER_02

Yeah, I I probably should have prefaced that I was not one of those with a pitchfork. Oh no, I know the and the and the you know the the flame on the end of the whatever they call that, uh store storming the the castle of uh your clinic.

SPEAKER_00

And look, I mean, I also know that like uh what I also want to wanna pre you know well uh not preface anymore, but uh postface uh pro uh with with the idea that prologue Yeah, I was gonna say, what is the prologue? Uh but I I also want to say that like again, we we always act on feedback. We always take feedback and we uh we try and make our services better, our clinicians better, everything that we're doing better. Um but with you know, my my gentle reminder, because I shield a lot of my team from from this sort of thing, you know, um, my gentle reminder is that like we're always gonna act on feedback, but you can you can deliver the feedback in a way that doesn't make someone cry on the other end of the computer, you know, and and we'll still act on it just just as strongly and just as seriously. Sure.

SPEAKER_02

And and I'll circle back to that. It it uh you know, on the on that topic of uh post-exertion malaise or post-exertion symptom exasperbation. Um, I was a marathon runner and triathlete. Uh I was actually training for a half marathon that was supposed to be on March 15th of 2020, uh, literally six years ago. Um the world shut down. It's it's odd to even think back to that time. Airport shut down, world shut down. And I virtually ran the race because I was actually supposed to push my uh team Hoyt uh buddy Liam in a race. I ran that, even though I was already feeling sick, but again, mile onset, because I mean a runner's mentality is if it's above the head, you continue to train. And if it's flu, you you don't, you know. So I'm like, well, I'm gonna damn it, I'm gonna run this uh you know, 13.1 miles. I did. I actually felt pretty good. Went out for dinner that night, and the next day I had a crash that uh was unlike anything I'd ever seen. And within two months, that was my uh yeah, within two months, I couldn't run a mile. Um, so it was a severe drop-off. So it certainly wasn't wasn't deconditioning because that's the other, you know, you know, they'll jump right to, oh, well, it's deconditioning. I'm like, well, no, I was I was heavily trained to run a 13 mile race, but uh yeah, anyway, I digress as we often do on the uh on the podcast. Um I I do want to thank you though, uh, because you you you did respond quickly and you know, because tra uh uh exercise, you can't exercise your way out of long COVID is a good general statement. There are there are there are you know uh corner cases uh and conditions of that prism, perhaps, uh, that have had some relief or success.

SPEAKER_00

Um and and you can't and more specifically, you can't exercise yourself your way out of PEM. And um, and under, you know, like as we continue to learn with Rob Wust's brilliant work, um, and David Sistram's brilliant work, post-exertional malaise is such a physiological phenomenon uh that can now be measured. You know, it's not easy to measure it. You need a muscle biopsy if you're if you're following Wust's protocols, and you need to do invasive CPET if you're following um uh uh Sistrum's protocols, invasive CPET basically being they put a catheter into your heart and they put you on a treadmill. But um Yeah, I've had that one too. Yeah. You've had it all. I've done it all, yeah. Um but the point is it can be measured. Um and uh and it's a phenomenon that we're just starting to understand, and it's a phenomenon that categorically we know is harmed or exacerbated by unnecessary, undue exertion beyond the energy envelope that you have. Gotcha.

SPEAKER_02

Um I want to switch gears just a little bit. Um first off, long COVID does not discern between demographics, socioeconomic status, although you can be impacted socioeconomically by your ability to go to clinics, like I had the privilege of doing. Um but it has become political, unfortunately. Um research grants, um Catherine, Dr. Catherine Young had a graph uh for some research. I saw it on Vox as well. Uh Vox, not Fox, uh that uh NIH new fund fundings are down 91%. Uh there have been hundreds of millions of dollars of grants that have been canceled. Uh the National Cancer Institute budget was hacked by 40%. Um how do we I mean that's depressing. All of those things are very depressing. Where do you see that going? I know you were part of RFK Jr.'s roundtable last September. You know, the first 10 minutes I was enthused. I'm like, wow, they've got the right people in the room. Um, I know speaking to Akiko, you know, um, that was uh what November? Um been a few months now. Yeah, she there was no follow-up. So he called it RFK Jr. called it a consortium. Um, by the way, they had a consortium in January that they canceled. Uh so this was like I guess a re re-jiggered uh uh consortium, if you will, in September. Um maybe a two-part question. You know, how do you see the landscape going, knowing that you know we we need to tap into those resources and anything specific you can talk about? Uh, I know there's been follow-up online. I think Amy was actually uh you know on an HSS panel uh in the last week, but um maybe two-part uh question. That landscape, I know that's you know, uh scary, um, but then any anything specifically you can talk about in terms of any follow-up you might have with uh you know the consortium, you know, round two.

SPEAKER_00

Yeah, I mean, I I think um uh it's government. Government always moves slow. Uh I mean there there's a reason why I think five percent of our funding across across my division um uh comes from NIH. Uh, because when you're involved in disruptive innovation, you you can't wait for government to to make decisions on things. Um and uh and and so uh the way I interact with government is always cautiously and just, you know, like I'll believe it when I see it kind of thing. Like words, words are nice, but actions are much, much better. So it's it's really my my posture is always show, don't tell. Sure. Um uh and you know what I I will say is it was encouraging to have the engagement, it was encouraging to have uh, you know, a HHS director say, I believe in these illnesses, I believe in vaccine injury, I believe in chronic tick and vector-borne illness, and we want to, you know, increase the level of education. Um, and I also will say that that since then, you know, we've had conversations with representatives from ARPA H and HHS about like what's what's gonna be done about it. Like uh, you know, is there gonna be an ARPA H mechanism that pushes you know aggressive and you know uh and and meaningful discovery work in long COVID? Um and you know, to to the extent possible, you know, the the promise that HHS made at the end of the consortium meeting was we'll get resources online. And one of the first things that they did was take our manual and put it online, put it on the HHS.gov website. Um, so I you know I can't fault them on that front. Um, what I will say. You know, on the con side of things is in general, um no matter what side of the political spectrum you you land on, the the neutral thing that you can say about this administration is that there's just large sweeping change, right? Um you can call it positive, you can call it negative, but it is large sweeping change. Um and that always brings with it chaos. And unfortunately, in government, creating chaos lengthens timelines. And I think that that's a hundred percent what we're seeing here is that there is chaos, and there is lengthened timelines between what someone says that they're going to do and what actually happens. And so um I'm continuing to engage uh with uh you know with HHS in good faith, of saying, like, you know, and and frequently am saying, look, you don't need to give the money to me. Like, I don't, you know, whatever money theoretically exists, like I don't usually do federal funding, but like spend some money on some good bets, you know, like fund a monoclonal antibody clinical trial, fund, you know, work into spike protein biomarker discovery. Like these are the things that that should have been done in 2020, should have been done in 2021. If you really want to be a heroic administration around long COVID, that's how you do it. Right.

SPEAKER_02

It I think the answer's got to be a combination of things, meaning I uh if we wait for the government, um, you know, that that's the wrong strategy.

SPEAKER_03

Yeah.

SPEAKER_02

Um, having said that, they've got you know what, uh billions of dollars uh available um that we should pour into you know monoclonal as an example. Um so we can't give up. It it but it's it's uh maybe that's why they have elections is maybe the only way to uh sum that up. But I'm I'm hoping that uh we can at least apply enough pressure to get that consortium back together again because those were world experts in the room talking about the topic. Um I think the community is little over awareness. I mean, I representative, I think it was Klyburn, had a committee back in 2021, uh, and Monica Devore Gutierrez um from Texas was there, and that was all about we'll explain what lone COVID is. But here we are, you know, you're the September meeting looked a lot different in that there were more experts in the room, and they were talking about, you know, uh meaningful trials and next steps. Uh, I just certainly wish that they would uh you know get that group back together again and and have some tangible action and you know unfreeze these uh the this grant money.

SPEAKER_00

Yeah. I um agree there.

SPEAKER_02

Yeah, so maybe um now that we've completely depressed the audience, I kind of had the same same uh conversation with the Kiko. Uh I know you announced uh is it Ferrion? Um there's some there's some uh peer review studies. Um you could just talk for a few minutes about some of the the trials that you're seeing, and and I know Ferrion is one of them. Um it was interesting, you know while you are are chatting, um I've certainly tried to do my part. You know, um my experience with rhythm was um it had its benefit because it it helped me, at least in in North America, with my disability journey because I had so much documentation about multi-system damage to my body. But one of you know, another trip I took was up to Van Elzeker's lab. This is uh paper, I believe I was one you know part of this study, but it's you know it's all anonymized. But he had a combination uh PET MRI scan to look at uh neuroinflammation that would lead to you know cognitive issues. Um I sound like I uh don't have cognitive issues, but there are moments when my wife will ask me a question and I uh she gets a blank stare and it resembles a lot like uh my dad's dementia. But anyway, I wanted to pop up that uh slide from Van Elzeker's, but uh if you could, you know, uh cheer us up with maybe some of the trials in the the Ferryon uh peer-reviewed study.

SPEAKER_00

I mean, you know, first and foremost, what you pulled up isn't isn't that just a beautiful figure uh uh in terms of when people tell you there are no biomarkers for long COVID, and you show a figure like that where we're seeing very clear neuroinflammation in this cohort of people who experience cognitive depair uh cognitive impairment, even when the cognitive impairment is dynamic. So, as you say, you can host a podcast one moment and you know, and then the next moment be asked a question and completely blank out because that is the nature of dynamic disability. Um even though people are experiencing that in long COVID, we still have folks like Van Elzeka able to show it on a scan uh very, very, very, very cleanly. Um and uh, you know that that that figure is really one of the you know, sort of the crux of what we were trying to get at with the Farion device, where um it is a it's a first in-class novel piece of technology that uses a therapeutic technique called micro Tesla magnetic therapy. Basically, the founders of this company sort of read about MMT, micro-Tesla magnetic therapy, some sort of like a couple of early papers in the 70s and 80s, where everyone was like, Yeah, this is a thing, but like it's hard to make, so we're not gonna, you know, like we're not gonna build it, but it's a thing. And they said, okay, well, let's let's build this thing. Um and uh effectively what this device does is it sits on your head, it it pulses low energy magnetic fields from one side of the device to the other, so that you um it and the sort of like area that it accesses is the whole brain. And um what these low energy magnetic fields in animal models appear to trigger is something called mitohomesis. So it stresses your mitochondria in your nervous system just enough that um it results in an anti-inflammatory effect in the brain. And it uh in animal models again, it reduces neuroinflammation. Um, we're yet to prove that it reduces neuroinflammation in in humans, but what we did was the next best thing. We took individuals who had long COVID and cognitive impairment, and their cognitive impairment had to be validated by a neuropsychologist, and it had to be um their cognitive scoring had to be abnormal. So it wasn't um, you know, uh it so we we we didn't include folks who reported cognitive impairment, although we obviously believe folks who say, listen, I have cognitive impairment, but when they sit with a neuro uh neuropsychologist, they score normal, which is a large proportion of people with long COVID. It was individuals who actually scored as impaired. Um and uh they got randomized into either a placebo arm or a treatment arm, active treatment arm. Um the trial itself was triple blind. What that means is that the therapist that was providing the therapy did not know if they were providing the placebo or the real therapy because the device just sort of turned on, made some noises, and either provided an intangible magnetic field or it didn't. Um, the patients were, of course, uh blinded to whether they had been randomized to treatment and assessment. And then we had individual assessors who were, you know, only their only job was to assess patients that were sent to them, and they were also blinded. They didn't know if the person was in the active treatment arm or the placebo arm. So um what was very exciting about this trial was that we saw uh improvements in cognition that we would call sort of moderate-sized effects. So people went from being cognitively impaired mildly to not being cognitively impaired, uh, or not, and and also in some cases not even reporting cognitive impairment. It wasn't all the patients, but uh participants, but it was a large proportion, and it outperformed placebo, which is something that is super exciting, uh, especially in the absence of a biomarker, just being able to say generally providing this therapy uh was helpful. The other thing that really got us excited about this trial was it's a first in human trial, meaning we have done animal studies, but this was the first time that this trial was being done in a human. And so usually when we transfer from animals to humans, we do what's called a safety feasibility trial, which is exactly what this trial was. The primary endpoints were safety. Did it cause any adverse events? And feasibility, did people use it the way they were supposed to? And full marks on both of those. So we had no adverse events, and uh, from a feasibility standpoint, we had 100% adherence to the protocol because long COVID patients are the best, as we all know. They, you know, they will do everything that you you ask. Um, so safety feasibility, tick, tick. Um, you rarely in a first-in-human trial, rarely do you expect to see efficacy signal because you don't know how to dose in people um, you know, when you've only been dosing in mice prior to that. But uh especially with a totally novel uh therapeutic intervention. So what you typically do is you do the lowest possible dose that is least likely to cause adverse events, and you just hope for the best. Um and in this case, you know, the dosage that was selected was still enough to cause cognitive gains. And what was particularly cool about this trial was we went from baseline to four weeks of therapy, and then we had an eight-week follow-up. So they stopped the they stopped the therapy after four weeks and then went away with their lives, and four weeks later came back for another assessment. And what we saw was from baseline to treatment to eight weeks, people continued to improve cognitively. Um so we're feeling pretty bullish about this. Um, the these results are hopeful and strong. Um, I know that cognitive impairment is one of the most concerning symptoms that that most you know, most people with long COVID and other infection-associated chronic conditions and illnesses will tell us, look, you know, I can live without movement if you tell me I have to live without movement, but I want my mind, you know?

SPEAKER_02

Right. You know, I actually um, you know, I've got a blog post. Uh uh hard to keep track of all the the media and I've got to try to migrate to Substack, but I digress. Uh did you have a blog post about kind of the so the disability journey in the US, whether it be private insurance or social security disability? I went in for an interview uh and they wound up springing a Pearson's cognitive test on me. Um the timing was perfect because it was afternoon, and as I I could tell as I walked through this thing, fatigue increased. My cog cognition just went in the toilet. Um it is uh I I agree with you. Yeah, if you could if you could address one of the symptoms, that would be great. But that was you know, that wound up, you know, uh pushing my disability application over the goal line, and you know, I'm on both private disability and and social security disability to a myriad of of things. And um, I think if I could work, try and show up to work one day, I would have to leave early and I would call in sick for the rest of the week, is is fundamentally it. But uh that's exciting uh to hear about that trial. Um how best to is Twitter Twitter is probably a good place for people that are interested in that to you know go through your thread and find information about that, uh, but also to find the manual. Um, what's the best resource for people to go and hear more about that?

SPEAKER_00

Yeah, I mean, uh definitely uh following us on Twitter, both both my personal, which is at Patrino Lab, and then uh at Core Sinai, uh C-O-R-E S-I-N-A-I. Um those are two really good places to just see all the clinical trials that we're running. Core Sinai is is frequently just like retweeting uh all of the trials that we're running. We're also on Blue Sky. Um, and we uh we we we try to we try to spend more and more time on Blue Sky because it's it's friendlier. Um so that's that's nice. Um and then also, yeah, we you know we have a website um at on the Mount Sinai website. If you just Google the the Cohen Center uh for recovery from complex chronic illness and Mount Sinai, the website shows up. Um and then we also are on Instagram. I am personally, my personal Petrino Lab Instagram is is a hot mess. I'm terrible at being on Instagram, but Core Sinai uh is is run by uh one of our amazing um uh uh uh amazing sort of educational directors, Violet, and it she does a phenomenal job. She's keeping everyone engaged and and and keeping everything going. We also do a monthly AMA, you know, ask me anything, where I just sort of get on and field questions.

SPEAKER_02

Um Yeah, I think you've got one this week, but although this will this will probably be pushed out and published after that, uh but before the end of March. But the AMA, how what's the cadence of that?

SPEAKER_00

Once a month. We we we try to do Oh, M is monthly. And it's monthly, yep. And and it's just anyone can come on and ask anything. Uh some of the questions have been pretty wild, and uh some of you know some of the questions are quite good, but um and we also just try to sort of edit those and and get them out so if you can't join synchronously, you can at least watch asynchronously.

SPEAKER_02

Yeah, I will uh uh I will post a couple of your interviews from last week because I don't think we we hit the tip of the iceberg of the promising trials uh that you spoke about last week as it maps to that long list of symptoms, you know. So I'll post that to my Twitter uh and um we'll link it in this podcast because I I think it's a much longer answer. Um, but I want to be respectful of your time as we're running um uh at the top of the hour. Do you have do you have one minute left uh to close? I have one last thing for you. Absolutely I do.

SPEAKER_03

Yeah.

SPEAKER_02

Okay. Um I'm gonna punish you like I did at Kiko. Uh, one of the things we do here on uh the Butterfly Pavilion uh podcast is movie quotes. It started out as me stumping my daughter on movie quotes. I use movies as uh uh part of my long COVID parody videos uh because I think you need entertainment, you need laughter, you need humor uh to deal with this. Uh so I am gonna spring a movie quote on you, and the idea is I I state the quote and you gotta try and guess what movie it's from. I'm not gonna use the name of the movie like I do with Nikki and give away the answer. Uh so but I'll give you a clue. This is a Western uh movie ballroom saline. Ballroom settings, excuse me. Um you're wanted lone COVID doctor. I reckon I'm downright popular. Are you a lone COVID patient? Man's gotta do something for a living these days. Dying ain't much of a living, boy. Any idea?

SPEAKER_00

I I I don't know. I'm feeling like a uh Val Kilma tombstone.

SPEAKER_02

You were very you're very close. Uh but it is the Outlaw Josie Wales, uh, which is one of my favorite movies, and has got some classic lines like dying ain't much of a living, uh, which I thought was appropriate because we're dealing with patients, and I will I will die from this um because I've layered on stage four cancer. Um, but I've tried to flip the switch and we talk about trying to bring light into darkness uh because it's a dark topic. Um we started this conversation, I think, with you know, it this is a very dark topic, but uh some days easier than others. Um yesterday was a good day. Um today's been a good day, so I I will take that. Um thank you so much for your time, David. And any any parting comments?

SPEAKER_00

Oh, well, thank you for what you're doing. Uh, I think it's so important to uh keep hope alive and uh you know, just in general, uh how incredible you have been over the years. Like um uh I'll just turn this into an ad for you in terms of like definitely when I'm feeling uh you know a little bit down, you can always I can always get a laugh from some of the content that you're producing and um and and and putting out there that with the the sole goal of just getting people to laugh and bringing people together. So I I can't can't tell you how much we appreciate what what you're doing out there in the well it uh you can't tell me how much I appreciate that.

SPEAKER_02

I I I started you know doing a lot of that is you know, nervous energy, part therapy, uh part advocacy, and also trying to attack some of those gaslighters that we talked about at the top of this, because this is uh very real uh and uh you know there's some brilliant minds uh trying to trying to help those in the in the long COVID community. So with that, I'll let you go and thank you so much for joining the Butterfly Pavilion Podcast.

SPEAKER_00

Thank you, Tyler. We'll talk soon.

SPEAKER_01

Our final jeopardy is named this castlighter in a picture. Write down your answers and how much you're willing to wager. This cuckoo for Coco Put, the COVID denier, opposition women on airplay with money, and with last name, and lastly, speaking bust correctly. If I come singing correctly, it is sneaking busty, you know.