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In the Lab #3 Hope for Long Covid
Recorded: Jan. 9, 2025 Duration: 1:05:40Space Recording
Full Transcription
Thank you. Hey, how's it going? Is this thing on?
It looks like it is. Hey, Stanley, how are you doing?
I'm good. We had to evacuate last night.
Yeah, I was going to ask how things are going there because both you and Rohan, like you're both in the LA area. I know he had to
evacuate as well. Yeah, it seems like it's really widespread and impacting a lot of people.
It's really hard to explain just, yeah, how unprecedented, crazy, just, yeah, the whole thing feels and surreal.
But gosh, too, I got to say, it really makes you think about the role community plays in our lives.
And like, you know, we get so confident that life is easy on certain levels.
But wow.
Definitely. Definitely.
Yeah.
Yeah.
I feel like things like that really help put things into perspective.
Yeah, totally.
I'm having some kind of headphone issue.
Can you hear me?
Yes. Just something. Can you hear me? Yes, just sending a message over to Rohan, and then we can dive into today's topic.
Yeah, give it some time.
Hopefully he's doing good, and I just sent to a bunch of people.
Also, I sent the email to the Twitter people, and so hopefully we can take a meeting with them next week.
Great.
Yeah, I think the more support kind of from HQ
to keep getting Desai into the mind space,
mind share of everyone, the better. Welcome back.
It seems to be working pretty well.
I haven't fully tried that yet just because it did not work previously.
And so I would love to hear updates if it's reliable.
This will be a good live fire exercise.
So far, so good.
What's really nice about this, though,
is it's like way easier to kind of share it with people
and send it around, you know?
Definitely, Yeah.
I feel like it's way easier to manage everything when it's on the web client or desktop version
of it.
Awesome.
We have Rohan here, so we'll be coming up in a moment.
Hey, welcome.
Hey, guys. Apologies for being a little late.
We are evacuating Los Angeles for fires.
Oh, Rohan, so nice to meet you.
I so hope you and all your people are okay.
I was telling Aaron I just evacuated last night from Venice.
Oh my gosh. Yeah, everyone's okay. Where did you guys end up going?
We're in Lancaster, our show north. So we're good and safe and just you know been such a day though of on the phone with people trying to make sure everyone's in the
right spot and man i was just telling aaron too like on on you know one of the themes we'll be
talking about today it's good to be a part of a community isn't it
yep this is true realize it now more than ever well this I think will be such a fun
conversation and I can't wait to kind of have Aaron give us an intro as people filter in and
open the door but maybe this is even a good excuse to have you on again you know when we're in a
settled place because I honestly feel like long COVID is one of the most important topics in the world right now.
I would love to do that if you guys have space next week even.
We'd be happy. We're going to be at the JPMorgan conference.
But we could find a time and do another one.
Aaron, would that be okay with you?
Cause that would even work really well
because it's so fun Rohan.
Twitter has actually reached out
because of some previous spaces that we did
and said they want to kind of support the DeSci ecosystem.
So maybe help drive some cool attention
to these conversations.
That would be amazing.
Yeah. I mean, more people are aware of long COVID.
I would love that. Definitely. Yeah. And Stanley and I have been talking about on this topic and
finding better solutions for long COVID both hits home for the both of us. So we're super excited to have this conversation whenever you're
available, have cool updates, which I think will be coming at like lightning speed as everything
keeps growing forward for long COVID laps. And I'm just so pumped to see what that looks like
over the next couple months into the years moving forward and how much impact that can have for so many people.
Thanks so much for saying that.
I feel a lot of responsibility, I think our team does, to move this forward.
A lot of people need help.
Thank you guys so much for it.
I feel like sometimes people don't know.
They don't know that long COVID exists even.
So it's something that needs to be talked about.
And, you know, and on that topic, you know, this is like this new series where we're launching.
So we're getting everything together and started.
And but yet for me, this is like a really special episode because I think
this will actually be the first time I'm talking about my own experiences as a long COVID patient
publicly, and I'm a little nervous. Well, don't be nervous. We can all share. I think that's the,
I'm really glad you're willing to open up, especially
publicly, because I think a lot of people, if you look at the numbers, I mean, there's
a lot of people who are out there going through the same thing and not talking about it.
It's so true. And then I'm blasting out the link. We'll be getting some more people coming on.
This is not our usual time.
And I do think that the key to Twitter space is consistency.
So we'll even maybe filibuster for a second.
But Erin, is there any chance you might like to just kind of give a little intro to what the show is and what our goals are here?
Yeah.
Yeah, so I guess we can start at the beginning of time, which was a couple of years ago when we first connected.
I had the pleasure of interviewing Stanley conversations about DSI, as well as really diving into the science of it
all and talking to the scientists leading this movement and really driving some of these
solutions forward. And so DSI Mike, formerly Bankless DSI, had a conference, I guess,
I had a conference, I guess, almost two years ago, year and a half ago now.
And then for the past year, I've been hosting a weekly DSI mic space with my co-host Merrick.
And just in recent convos, especially as DSI has kind of come into the mind space of so many more people recently.
Oh, Crypto Shrimp's on here as well.
He really helped get the initial Bankless DCI conference going
and has been a co-host for a lot of the different spaces as well.
May I say Crypto Shrimp, the DCI superhero?
Yes, that's a great, great name for him.
And tying back to just what we were touching on at the beginning, like all of this is really this community effort that creates these different evolutions is really highlighting some of those scientists, an idea that Stanley came
up with of really diving into the lab, diving into those conversations from a more scientific
perspective. And that's what we're doing here today. This is episode three and talking with
and talking with Rohan from Long COVID Labs.
Rohan from Long COVID Labs.
Yay.
Thank you guys for having me.
Rohan, and seriously, man, just so excited to hear the story and dig in.
And yeah, just so curious, like, how did this become an issue that you, you know,
realized was probably the most important issue in the world right now?
And then how did this project start?
I'm really just so excited to hear, man. Yeah, well, it started being the most important issue in the world for me
because I got sick and then I got long COVID. And so I was working on other projects. I have
an academic background, neuroscience, a little bit of virology and um but mostly a neuroscience and
then a health care background and um in march of 2020 i got i got coveted 19 and really mild
initial infection and then just kind of had a slow degradation of symptoms for two and a half years
and i started to get desperate and um you know like a lot of other
people with lung COVID tried a lot of different things I went from you know basically taking like
nothing no pills or supplements to having a huge drawer full of every type of supplement and herb
and this and that that I could try to find that would alleviate my symptoms.
And eventually I stumbled across this paper
that came out of the NIH where they did an autopsy
of people that had died from not COVID
like months and months after their initial infection.
And that autopsy paper actually showed virus,
replicating virus in the body and brain of people
way after their initial infections.
And that was kind of scary, but it was also a huge light bulb moment because I thought,
well, maybe this is just the virus that's just sticking around in my body.
So that means I need antivirals.
And so I started experimenting with antivirals.
I did an experiment, which actually just got published now, like three years later,
a series of case studies
which was using paxavid for an extended course of time like the study results i also felt better
during this during the administration of that and then felt a little worse afterwards and then i
combined paxavid with another drug which is a long-acting monoclonal antibody called evusheld
and i did three treatments over three months.
And by the second treatment,
all my symptoms completely disappeared
and I've been symptom free now for more than two years.
And so, yeah, what we're doing at Long COVID Labs
is trying to figure out how to scale that to more people.
And if there are, yeah, if there are ways to do it cheaper
than I did, I paid out of pocket and probably didn't do
things in the optimal way and so working with the best scientists that we that we know to to figure
out what are the real mechanisms here and how do we really cure this thing scalably for people
hey um can you guys hear me i'm so sorry i know you said a microphone adjustment, Twitter spaces, you know.
Well, amazing and so interesting.
And Rohan, maybe just to kind of set a baseline for the audience too, like what is long COVID?
Like what are the symptoms?
Do we know what causes it?
And then how common are post-viral syndromes?
Like are there other post-viral syndromes? Like, are there other post-viral syndromes
that are similar to COVID that, you know,
like how does this all fit into the, you know,
the scope of virology and medicine?
Okay, so that is such an interesting question.
And actually, it turns out that there are a lot
of post-viral, post-infection conditions that have unfortunately not gotten the medical and research attention that they probably deserve over the years.
There are things like ME-CFS, which may be related to infections.
Of course, Lyme disease, which may also be related to pathogens.
So there's actually a long history of people getting sick and then not getting better after. It's just with COVID, there's been so many
people. No, I mean, it's like a national public health issue. And I'm so sorry to be silly,
but I do ask a leading question because I actually, my first role in precision medicine was
at the Stanford Genome Technology Center working on ME-CFS. And really, it's kind of shocking how
close the symptomology of those conditions are, right? I don't think it's a coincidence. Yeah.
And hopefully with so many people sick with long COVID, maybe ME-CFS will get a little bit of love now as well and we'll be able to find joint mechanisms potentially.
And Erin, have you heard of ME-CFS before? The CFS is chronic fatigue syndrome.
It's like the CFS is a chronic fatigue syndrome.
Yeah, definitely.
Was diagnosed with a handful of years ago and so have very personal experience or knowledge with it.
Oh, look at me putting my foot in my mouth there.
But wow. I mean, can I just say what an incredible trinity of people we have for this conversation?
I feel kind of blessed
to be here. And that's the thing is it really is looking so, you know, the symptomologies are so
close. It seems like we might, you know, start calling at least some varieties of ME-CFS like
long flu or, you know, long common cold or whatever it is. But like, how do we understand
this too? Because like one thing that's confusing for me is like, you know, long, common cold or whatever it is. But like, how do we understand this too?
Because like one thing that's confusing for me is like, you know,
because I'm actually part of some support groups for long COVID patients.
The symptomology seems so different.
So like, Rohan, what are these viruses doing to us, man?
Well, that is the question, the $50,000 question or whatever the game show was.
Well, we know that viruses can persist, right, after an initial acute infection.
And even in the last few years since the pandemic began, there's been a lot of research showing that potentially some of the neurodegenerative disorders that we didn't always associate with viruses and pathogens may actually have some links with those infections, like, for example, multiple sclerosis and Alzheimer's disease. as one example of a pathogen find ways to evade our immune system and kind of hang out and when
they're hanging out and they're replicating even at low levels they can mess things up a little
bit they're using our cellular machinery they're you know not supposed to be there and and um and
that can cause issues and so i think there's probably two broad groups of symptoms or targets
that we could be thinking about with long COVID,
and this may be the case with other viruses. I don't know. But in my mind, one hypothesis is
that you've got viral persistence happening and targeting viral persistence with, for example,
antivirals, like I did, would be the top of the list for dealing with that set of problems.
And you may have secondary issues
downstream of that we talked about neurodegeneration just now but even things like autoimmunity may
be triggered by having persistent virus and lots of cell types in the body and so
dealing with then the body creating auto antibodies where it starts to think oh my gosh like
this cell seems a little weird because it has a persistent pathogen.
And maybe I should try to flag that as something that the immune system should take care of.
And over time, that can lead to a lot of problems as well.
And so there may be different buckets of things that are downstream of persistence of the pathogen.
Wow. I mean, I have to say, you know, I had this experience. I came from physics. And when I was a physicist, I thought we were working with the most complicated systems in the world. But it is so hard not to be humbled by biology. It's like each of our bodies contain universes. different little creatures and bits of information interacting and in so many different ways.
Wow. I mean, I have to say, you know, I had this experience.
And yeah, virus is just devious the way they kind of repurpose and interact with other
systems.
I have to say that also, Aaron, I'm so curious too, to hear a little bit about like, what's
been your experience as a CFS patient learning about COVID?
Is this kind of like a reflection you've kind of thought of or been aware of
before?
Yeah. So unfortunately the increase in the number of people who contracted
long COVID and had some terrible complications of it has actually been the impetus or ignition for accelerating a ton of research on conditions
such as chronic fatigue syndrome or POTS or autonomic dysfunction broadly.
And it's super unfortunate that it took millions and millions of people having all of these complications for that
research to be advanced. But now that's actually how we're starting as a society to be able to
better understand some of these connections. And the real kind of bummer of this all is,
if that funding would have been allocated to the spaces previously,
potentially a lot of people who are now suffering from long COVID, it could have been completely
prevented in other types of ways beyond just like preventing COVID spread. You know, I really
couldn't agree more. And I also, you know, think there's so many tools that are sort of reaching maturity that let us see
these like really subtle interactions that happen in our biology more clearly. So
for so many rare diseases or under understood diseases, I feel like long COVID has this small
silver lining that it will grow these conversations about, you know, our real
complexity as patients and the need to really be precise about how we understand each other.
I have to say though, also Rohan, I'm so excited that we're setting an intention of having
this be a version one of the space because I'm going to, Aaron, I'm trying to share a
video and the web interface is not,
I was trying to put it in the thread.
I wonder if maybe you could attach it.
I just sent it on Discord.
But I'm going to actually see Rohan if I can get this hero of mine and someone who's almost
like a sister to me.
This was my biggest first mentor in medicine, Dr. Ami Mok.
And she was the
translational medicine director at the Stanford Genome Technology Center when I was there,
and she was a lead on ME-CFS. And she's over at Genentech now, but I know this is an area she's
really passionate about. And I have to say, hearing you guys talk about this, because she was
explaining to me some of the thinking about these like new retroviral therapies.
So, yeah, I would I would have to I would pay to hear you guys talk.
I'll tell you that. But maybe we could touch on those therapies, too, because it sounds like this is some of what the Long COVID Labs project is going to be working on.
Right. And so the idea is kind of that like the body's virology has been disrupted
and then, you know, you guys are doing something to normalize it or should I be thinking about it
in a different way possibly? Yeah. Part of what we're doing with Long COVID Labs is accelerating
research focused on treatment for Long COVID. That's been
a huge point of concern for a lot of the Long COVID community and frankly, a lot of the scientists
in the space as well. A fair amount of funding was allocated to researching COVID, but it was
very focused on basic mechanistic questions and the possibility of viral persistence has,
and the possibility of viral persistence has, parallel, adaptive, even clinical trials,
focusing on lots of different potential antivirals for SARS-CoV-2, the virus that causes COVID-19.
And so that's really the first goal of this DAO, which is to just accelerate parallel clinical trials so that
we can start to figure out whether there are antivirals or combination antivirals like I did,
different dosing patterns, different durations of medicine that cause a reduction in symptoms
and biomarkers even associated with long COVID.
even associated with long COVID.
Wow, now that is like so interesting.
And would you say too, this is something
that might be interesting to say,
say like, like Aaron is a CFS patient too?
Like, are these things that are sort of what we're learning
about these applications in long COVID
or applying to some of these other post-viral
conditions? I'm super interested to, and I apologize if there's latency. I mentioned when
we started the space, we were evacuating from the fires in Los Angeles, some on my phone. But I would love to hear more, Aaron, about your experience with ME-CFS.
My guess is that there are shared mechanisms, and that may be one of the seminal papers that came out of, for example, the long COVID literature,
the COVID literature was the fact that such a high percentage of patients had autoantibodies, antibodies that are targeting their own cells.
And so I wonder if there may need to be some combination of attacking viral persistence and
then perhaps downstream effects of that like may need to be a second class of drugs that are used in parallel over an extended period of time
in order for the immune system to start to reset. These are theories and hypotheses, but these
are things. Yeah, I'm curious if others have thoughts, but this is kind of the research that
we need to do. And so the faster that we can get great science out there and spending way too much
time writing grants and getting most of the really cool research unfunded, if we can help
facilitate this and speed it up, I think we're going to start to get answers very quickly.
Oh man, that is so interesting. And with the latency too, I always think with Twitter spaces,
you never know
how it's gonna go and that's the fun though is we're just having a fun flexible conversation
it's like when you're at the coffee shop and some motorcycles drive by you know nothing nothing's
perfect except the fun of it all um and and yeah it's so interesting because like it really was
um in terms of like diversity of phenotype pretty fascinating to see how like CFS
presented in patients like both in terms of their symptomology but also you know what kind of data
was indicative and just for example we found that you know disease state was very like well
predicted in many patients by vocal quality and then in some patients, not at all.
And so it just sort of goes to show
how complex the nervous system is
and all these supporting systems.
And it really is a problem for the precision medicine age.
So I'm so interested to hear that.
And yeah, and then I think, Erin,
did I send you an Instagram post
that I was hoping to add to the thing?
I'm trying to find it.
And then just please forgive me.
I'm a little fumbly today.
I don't have Instagram on my phone.
So if you did, I can't see it.
No, I will find the link and try to share it.
Forgive me.
I think it's on like WhatsApp or something.
But anyway, it's actually a picture of me from maybe like three or four months after I had COVID.
And this was pretty early in the pandemic.
And when I had COVID, I had some pretty bad blood clotting.
And I had some pre-existing neurological conditions going into it.
neurological conditions going into it. So it was, Rohan, just a hell of a thing, man. I think about
So it was, Rohan, just a hell of a thing, man.
a year before COVID, I'd worked my way from like a wheelchair to a cane. And then, man, did COVID
set me on my butt. And so, yeah, for the last year of the pandemic and then the first
period after, I was, you know, in a wheelchair and then really doing a lot of rehabilitation. And
it was so challenging. And it just made me think too, just like how many people are,
you know, dealing with this all over the country. And, you know, honestly, like I would even just
say like post pandemic, it felt to me like society's just not quite firing on every cylinder.
And I do wonder if that's not unrelated, right?
Because probably a lot of people, you know, aren't in a wheelchair,
but might be having, you know, cognitive fog, maybe too.
And so I'm kind of curious your take on that,
like the kind of broader public health, dare I say, crisis of long COVID.
First, I'm so glad you're sharing your own personal and struggles because I think if we don't talk about this, it's very easy to just sort of pretend
it's fine. And the truth is a lot of people are struggling. I mean, COVID and long COVID
conditions are occurring anywhere between 10 and 30 or 40% of people that have COVID-19 have these symptoms that last for weeks afterwards and don't dissipate. brain fog which is a cute phrase um i mean fog is kind of like mysterious and kind of sexy but um
but there's a lot of there's a lot of data for example the uk biobank study showing literal brain
damage and atrophy cognitive dysfunction loss of iq points between three and nine points
after a coven 19 infection even mild asymptomatic infections and
healthy college students, when you follow them on these cognitive assessments over a year,
they'll swear up and down a year later, but they're completely fine. But then you notice,
and you can see and you can measure cognitive issues and just think about how many infections
people are having. Maybe it's once or twice a year. If you're losing three, four, five, six, seven IQ points every time, it doesn't take long for that
to become a cumulative societal issue. And you have to wonder if there are reasons why not only
disability claims are spiking and chronic disease spiking, but also things like car accidents and motor accidents
and even airplane accidents. I don't know if these things are connected. We have to find out,
but I think that the writing is on the wall that we don't want to allow persistent viral
infections to happen. It's not good for us. It's something we should be avoiding. And if we can't
avoid it, we need the tools in order to
decrease the damage or eliminate the damage for ourselves and so sooner i think to your point we
can talk about this and acknowledge it's a problem the faster then i think we can actually start to
solve it in a way that allows us to have the most health weekend as a society you know oh dude i i
am um it just makes me so happy that, that, that this project exists,
like, like, seriously, I have a little, little teary-eyed and, um, um, and, and I think that
too, man, like, I feel like we got to start supporting each other, like what, what Aaron
was talking about, about community. And, you know, I think these are solvable problems and what you guys are doing is just so beautiful.
And it does look like Aaron was able to add this Instagram post.
And so just on this note of community and, you know, finding strength together, I just thought you guys might get a kick out of this.
Like my best friend here in Venice is a gentleman named Ike Ketcher, who's the world's biggest bodybuilder.
And it was so sweet. He took me kind of under his wing when I was trying to get out of the chair.
And we would go down to Muscle Beach in Venice and he would help me get through my PT, man.
So it's just exciting. You know, it's like I feel like we can kind of assemble the Avengers to try to, you know, solve this.
You know, seriously, I think you're right right though. I think that this is a crisis. I think that for people like me with
severe effects, it's substantial. And I, I think, yeah, it's like, we got to solve these problems
for everyone. And, and then do, do forgive me if I, if I want to start getting a little bit more
nerdy, cause I'm, I'm so curious about, you know, to, to do whatever degree you guys are,
or have it figured out or able to talk about it. I'm so curious about, you know, to do whatever degree you guys are,
or have it figured out or able to talk about it.
I'm so curious about what kind of methodologies
you're thinking of following and yeah, very interested.
Like what kind of data are you thinking
of collecting on patients?
Yeah, happy to talk about it.
And thanks for sharing that Instagram post too.
That's cool.
I got to follow you guys after we get up the space.
But, you know, I was mentioning that I experimented on myself in 2022.
And this is where, you know, some of the impetus for starting long COVID labs came from.
The first thing I tried was Paxabit, an extended course of it.
Paxabit is a viral replication inhibitor.
So I guess let's get a little bit nerdy,
not too nerdy for a second and just talk about,
you know, how viruses work, right?
So there are these super tiny little nanomachines
that can get into you in different ways.
In COVID's case, usually you breathe them in
and then they start to replicate
and they go from your lungs and your respiratory system, perhaps into your blood and then start to seed your organs.
And so you have some inside of cells and some outside of cells and different medicines and medications.
They can target virus at different stages of its own life cycle, its own little virus life cycle, and also different types of cells that it might be in, different parts of your body.
And so with viral replication inhibitors, those are very small molecules.
They're small antiviral molecules.
And the good thing about those molecules is that they are so small, they can get into
a lot of places that are harder for what are called biologics or larger molecules to get
what are called biologics or larger molecules to get into. And so, you know, Paxavid actually did
into.
help me when I took it for an extended course of time while I was on the drug. When I came off of
it, you can imagine something that's stopping replication kind of just freezes the virus
wherever it's at. And for a while, you know, you're kind of paddling water,
maybe you get your head above the water a bit but as soon as you remove the virus well the virus starts to multiply again
and it comes back and so that led me to take a cue from HIV research, which is almost always using combination treatments.
Typically, a certain medication, that's the problem with the virus that can mutate.
You give it a drug, and then maybe kill all of it, and then what you do is you end up killing
all of us, all the pathogen that responds to that drug
and you keep all the ones that don't.
And so that's not a good idea.
So combination treatments are really great
for system pathogens and stuff.
So that's the right.
I tried pathogen,
and I combined it with a long-acting monoclonal antibody
called Heavy Shop,
which was made by a pharmaceutical company
called AstraZeneca, a big pharma company.
That is basically a mix of two human antibodies,
much bigger molecules, different mechanisms of action
that are designed to stick around in your body
like three months or so.
So I just combine those two things together,
different mechanisms, different types of drugs
in repeated treatments, And that cured my symptoms. And I think in
talking to scientists, wow. I just have to say that is so interesting. Hey, Aaron, Rohan is,
I can hear him pretty well, but he's cutting a little in and up for me. Is that for you too, or is it my connection?
Yeah, no, I had a similar listening experience. Was able to get the gist of it, but was questioning it a couple times.
Thank you. I just want to make sure it was in me because I'm evacuated too, but that's the thing, right? Community, we can all cope and move forward positively together. And Rohan, I believe almost everything you said went through, but what he was
sharing, just maybe for the audience who aren't familiar with some of these things, is we have
these things called antivirals, and these are molecules that disrupt the biological function
of a virus. And then there's other things, like also Rohan mentioned monoclonal antibodies and so this would
be someone has found an antibody that targets the viral particle and they've cloned it and so
basically they're giving you an infusion of an antibody that's going to be hunting down the virus
and then what Rohan is sharing is it was you know something where taking one of these things
seemed to impact the disease state you know which is happening at the one of these things seemed to impact the disease state, which
is happening at the intersection of these very complex layers of the human biological
interactome.
But it returned.
It maybe was suppressing the replication of a virus, but then when that was adjusted,
it came back.
But then what he's saying, and this is just what's so exciting,
is that with the right combination of treatments,
it seemed to have had a long-term impacting effect.
It seemed to have corrected the imbalance in the body's virum.
Is that a good summary, Rohan?
You nailed it, Stanley.
Can you come with me every time I need to talk about this?
Oh, bro, listen, like I said, me and Aaron's mission here is to tell these critical stories.
And I just on a personal level, man, I got your back. Like anything I can do for your project, please let me know.
It's I genuinely think for health, for science and for society, like one of the top three most pressing topics.
And yeah, it's just, I made a statement before too, that we're in this interesting moment.
And I like to think about, you know, right after the microscope was invented. And, you know, what
a privilege it was to have been one of those first people looking at this invisible world all around
us through a microscope. And I think we're in a
similar moment because our biology is exquisite. You know, we have our instructions stored in
genetic information that executes through transcription and creates proteins and
metabolites. And then all these different, you know, layers of biological data dance together. And the full complexity of life is at that
intersection. And yeah, we just have the tools to do the kind of stuff Rohan's talking about,
like interact with a couple of those layers at once, and then also measure it and kind of see
what's happening. And so, you know, I think this is this field they call precision medicine, and we're just at the start of it.
Oh, very exciting, everybody. We have an actual protein engineer in the audience, so maybe it would even be fun to invite Amelie on the stage if we feel like it.
But yeah, Rohan, this is actually kind of cool.
So Amelie works with me on AI-driven protein engineering.
works with me on AI-driven protein engineering. And so we've actually done some work with things
like, say, the SARS-CoV spike protein. And that's a very interesting thing, too, is down the road,
we might scan your biological interactome and then generate some custom proteins.
That is super interesting. I would love to hear more about the work that you guys have done. some custom proteins.
That is super interesting. I would love to hear more about the work
that you guys have done.
And it brings us to the bioharmers,
which is something we could talk about for a long time.
Oh man, I can't wait to hear that.
And then some of the methodology on the patient.
So, but yeah, maybe we can,
for the question and answer period,
and then also for our second show next week,
maybe we can even kind of dig into some of those more details.
But yeah, so what is kind of the plan?
Would you wanna maybe tell us a little bit about like,
are there, is there a plan for a first patient cohort or a
way to approach that yeah so the way that we're doing this is starting case studies so one um
science is expensive and the fastest way to do things is to actually start with case studies
that's often where research actually begins. And so we're working with
clinics and have published this protocol, which we'll soon be publishing open source
for everyone as well, that basically uses a combination approach for small molecule antivirals
plus a long-acting monoclonal antibody, similar, well inspired by the treatment protocol I did myself. And we'll see how that affects
people. Hopefully there'll be some signal in the noise there and that will then scale to 30 patients
in a clinical trial looking at these two types of therapeutics in combination.
One of the bigger picture though, I think is, you know, maybe we hit this out of the park right on the first try, but most likely we will need to adjust the molecules that we're using, the dosage and the duration.
we're hoping to do with this current, this current fundraise that we're doing for Long
COVID Labs with our token is to actually build a adaptive, decentralized parallel engine
where we can run a lot of these trials in parallel testing, different types of drugs,
different types of combinations in a regular statistical framework that will allow us to
actually pick winners more quickly
and hopefully find cures more quickly too.
Wow.
This is just so cool.
And, you know, Rohan, I actually, if it's okay, might even just send you my email and
maybe we can jump on a call with Amelie because we actually have a non-profit foundation
that does molecular engineering for different projects. And it might even be that we could
create some kind of targeted protein together. And I think that's one of the really interesting
things is like the Interactome is just so high dimensional. And so potentially just gumming up
the works of one thing or another thing, once know, once we can, you know, do that systematically and measure the impact, there might
be, you know, way more tools in our tool belt than we even know right now. But we are kind of getting
into the last 15 minutes of this show. And again, this is like kind of us getting in the groove for
the new year. So thank everyone so much for coming. And I hope you guys will be will be back and, and, you know, share, share with your friends that we're having
these conversations because we want to grow the movement. But yeah, I did think it might be really
fun to have some people come up and ask questions. So anyone who would like to request a question,
please come on up and, you know, quite frankly, Amelie too would love it if you wanted to come
talk a little bit about viral proteins. But Daniel,
I saw you requested and thanks so much for joining us, man. How are you doing today, bro?
Yeah, I'm doing great. And yourself?
Dude, I'm in such a good mood. This rocks. I have to say, this has been one of my favorite
shows I've done in a long time. Yeah. So I'm an advocate for those living with a chronic SARS-CoV-2 infection, and I do come
with a distinct advantage, and that is that I've lived with HIV since 2015. So I've
talked long about drug repurposing, and, you know, there's some issues, you know, I commented on one of
Rohan's posts about this. And, you know, we've seen resistance develop to Paxlovid already. And
really, you know, we don't, we need to have an objective test, which would be a viral load test if we're going to, you know, trial any medications.
Because the people with long COVID have gone so long without any antivirals that, you know, they're going to have a very large viral load.
So, it's unlikely that they're going to experience some kind of massive symptom improvement with
a viral load as large as it is because there's only so much, it's referred to as a log copy
reduction, that is going to take place with each pill.
And, you know, the other issue with Paxlova being prescribed as it is,
is it's boosted with ritonavir,
which is a protease inhibitor that has long been disfavored in HIV medicine because of the tremendous side effects that it carries.
And the side effects include those that people are complaining of,
namely endothelial dysfunction.
It leads to foam cell formation, which is contributing to folks' atherosclerosis.
They're already experiencing that.
It can actually lead to Cruchfeld-Jakob disease and kidney stones that won't pass for two
years.
There's journal articles that talk about that.
It impairs myelin maintenance with oligodendrocytes in the brain.
It impairs or impacts sperm quality.
So there's a lot of things that are of concern.
One of the other major concerns and the source of drug resistance is that SARS-CoV-2, like
HIV, productively infects microglial cells, which we've known since 2021.
And that is the primary source of drug resistance in the HIV positive when they discontinue therapy.
The process is called CNS escape.
And so when therapy is discontinued, that virus will actually leave the brain and reseed peripheral tissues, and then it can be transmitted in a forward direction.
And, you know, this is a respiratory disorder or disease or virus, rather.
And unlike what we do in HIV medicine, there is no genotyping of an individual's virus. So, you know, we don't know
if that person has a resistant strain to Paxlovid or not. And if they do, then they're not going to
see any benefits whatsoever. So, you know, and, you know, it's not just those living with long
COVID that are impacted, but it's those that are being
prescribed Paxlovid to escape hospitalization and death in the acute phase.
So, you know, there are other, yeah, there's other boosters.
For instance, Kibikostat is used in Gilead's regimens.
It has demonstrated efficacy against SARS-CoV-2, which, you know,
is in journal articles. And so, you know, the building of a complete regimen that people could
take is totally possible. Interesting. Daniel, I'm so sorry, if I could just say,
how did we get so lucky to have you jump up and share this wisdom with us, bro?
Yeah, well, you know, I've been advocating for, you know, dude, I've been advocating for folks with long COVID and have talked about drug repurposing forever, sharing journal articles.
So, yeah, I mean, you know, I've benefited from very, you know, strong advocacy, you know.
No, I love that.
And Rohan, this is pretty cool, right?
I mean, this is the whole idea that we're casting a net and connecting the people to lead a, you know, community research project.
And Daniel, Rohan, go ahead.
Sorry, I was just going to make a stupid joke.
Why don't you make the joke first?
I want to even.
I'm sorry.
It's so silly, but I'm just, dad jokes.
It runs in my family.
As Daniel was talking, I was thinking,
you know that song, like the knee bones
connected to the ankle bone?
It's a good thing they don't have the virum in there
because it'd be like the virums connected to the, you know you have 30 minutes uh you know sharing everything that's
connected okay well that was a dad joke um yeah i mean daniel you and i talked years ago
and i thought i had a really good conversation because I think I agree with a lot of what you're saying.
I'm curious what you think we can do.
I think combination approaches are smart
given the resistance that could be developing.
We're already seeing some early publications
talking about that, particularly Paxilib,
and God knows Paxilib and ritonavir in particular
aren't the best, but what else is FDA approved or at least allowed to be sold in the United
States that we can repurpose quickly?
What are your thoughts there?
Yeah, so I've talked about Travada in the past.
There's a study that's going to be done.
Amy Proow at PolyBio called me after she heard me being interviewed by Dr. Murphy.
And she called me on the way to Montana, and I talked to her about the study.
And I sent her a number of journal articles.
And then she finally got around to launching that trial.
Now, this isn't medical advice, so no one go and do this,
but this is what could be done if you wanted to.
You know, if people looked at this and said,
yeah, this makes total sense, let's go for it.
In HIV medicine, you have a protease inhibitor or you have an integrase inhibitor,
and they sit on top of what is referred to as a double-nuc or an NRTI or nucleoside reverse
transcriptase inhibitor.
And then they're boosted. Some medications are boosted. So what theoretically could be done for individuals to have a full
regimen is you would take the main ingredient in Paxlova, which I can't ever remember the name of
it. Then you would put that on top of Travata, which has TDF and M-tricitabine in it and
then you boost it with Cabicostat and you would have a full regimen for SARS-CoV-2
like you do for HIV and it would really be that simple and then you can take a viral load test and show that it works.
And then, boom, there you go.
That would be all that would have to be done.
And then that's it.
You have a full regimen.
You've got the protease inhibitor.
You have two NRTIs.
And you have the booster that would boost it.
And that's really about it.
And you can get the Travada would be $16.
It would be $300 and something for the Kavikostat through Gilead, which would be a separate prescription.
And then whatever the main ingredient of, you know, impact slovid, whatever that would cost.
You know, because that is one of the biggest things.
Again, why I've been so concerned about drug repurposing is, number one, this virus relies upon the ACE2 receptor, which is in the kidneys and the liver, right?
kidneys and the liver, right? And there are minimum requirements from a kidney standpoint,
a minimum creatine clearance rate for the kidneys and a child abuse for the liver.
And if you don't have that, then you don't take the first pill. If you do take it and it's at a
do take it and it's at a, you know, a reduced dosage, then you have an issue there where it's
not being suppressed at the level it needs to be, which that's one thing if it's a sexually
transmitted disease. It's another if it's a respiratory virus. And then, you know, the cost,
you know, an HIV regimen is $3,600 a month.
So, you know, if we're interested in keeping as many people alive as humanly possible,
these drugs are going to have to be cheap, you know?
Then the other thing that we've not talked about that is of concern, and we've seen it.
We've seen people talk about CMV reactivation.
We've seen people talk about EBV reactivation.
We've seen people reactivate tuberculosis.
One of the reasons why medications are initiated as quickly as humanly possible in the HIV-positive population
is to prevent the development of what is referred to as immune system reconstitution inflammatory
syndrome. If an individual has CMV in their body and they initiate antivirals or they have TB and they initiate, then they
can develop those conditions.
Now, what's of concern is if they have CMV in their body, they can actually develop anitis.
And that untreated leads to blindness, as does a mycobacterium avian complex infection.
So, you know, are we ramping up medications to treat opportunistic infections
in people that we're going on boarding and virals in?
I seriously doubt it.
So, you know, you have to make sure that their vitamin D levels are sufficient,
that their gut isn't leaky.
And, you know, there's a whole lot of things that have to be taken into consideration or, I mean, the mess is just going to get, you know, bigger and bigger and bigger,
you know, and there's going to be more strain on the hospitals,
more medication shortages for treating all
of these damn things that could potentially pop up.
You know, so, and I mean, it's not like we haven't seen this before and know what's going
to happen.
So it's, yeah, it's nothing that deserves a willy-nilly approach because, you know, there's
a lot of people's lives that are in jeopardy.
Daniel, I'm curious.
Given you've, I think, experimented with some of this and worked with some people as well who have tried maybe this exact stack of medications or at least some of them. What are your thoughts on dosing?
I don't think you were here for the beginning of what we were talking about,
but essentially one of the things we're proposing is using adaptive trial design
to sort through dosages and durations, combinations, et cetera.
But what have you seen thus far in terms of dosages and time?
Yeah. have you seen thus far in terms of dosages and time? Yeah, so I have one. As far as the dosages are concerned, you know, unless there's impairment
in the kidneys and the livers, then, you know, they should be initiated at the full strength.
You know, there's really no reason to do any dosage adjustments unless the body can't tolerate it.
And that will give you the best suppression possible.
So, and that was at the full strength of Truvada.
As far as what I've observed in people, there was a woman that I worked with.
a woman that I worked with I don't know if she's in this room I haven't seen her
I don't know if she's in this room.
I haven't seen her.
but I performed a mocha a Montreal cognitive assessment on her oh her
neurologist also did and we both came back with a 22 out of 30 which anything
less than a 26 is considered to be pathological. She failed the serial seven where you subtract 100 from seven until you're told to stop.
And she had other deficits as well.
She had numbness in her scalp and, you know, a lot of other neurological issues going on.
So she initiated Trivada.
I followed up with her that Sunday to see how she was doing,
and she was able to successfully complete the Serial 7.
And her subsequent MOCA score was a 28 out of 30.
So she went from... Her subsequent MOCA score was a 28 out of 30.
So she went.
It's breaking up a little bit for me.
Yeah, shoot.
I'm so sorry.
Because Daniel, I think it's cutting out.
I just got a little unheurable.
So thank you so much for jumping up, though. And Aaron, also, I mean, I'm happy.
I got a little time, so I'm happy to go over, but yeah.
Go ahead after you.
Yeah. Just wanted to make sure we're, we're,
yeah, you've been cutting up a little bit, Daniel. So,
this was great being able to get the gist of what some of the different knowledge and experiences that you're able to kind of bring into this conversation and being able to.
Daniel, I think your signal is a little bad.
So we're going to end the questions for this week from you.
And we're just about at the end of the show, too.
But we do hope you'll join us next week because I actually would say, too, I would pay to listen to a podcast of just you guys talking virology.
But, yeah, Erin, what do you think?
And should we wrap up the show for today or see if there's any other questions?
I feel like this was such a good convo and I'm just so excited for next time, actually.
I feel like this was such a good convo and I'm just so excited for next time, actually.
Yeah, I would love for anyone else who has a question for Rohan to come up on stage or feel free to leave a comment down below, send a DM over to the Dtsai Mike account.
And would love for that to be added into the conversation here. We'll be having a follow-up convo with Rohan as
well and want to be cognizant of everyone's time. So Rohan, if you have to go, I also want you to
be able to make sure we covered the COVID token and any other kind of recaps that you might want to share as well?
Yeah, well, I mean, this has been such a great conversation, and I'm looking forward to doing another one. I'm hoping that if we keep talking like this, beyond the... There's a lot of
conversations, I think, about long COVID and the disability you can feel and the seeking community,
and those are important conversations too.
But I think it's really past time that we get to the brass tacks of what our
mechanisms and what our potential approaches and can we rapidly scale
treatments and research that leads to treatments.
And so this has been such a great conversation.
I really appreciate it.
If anybody does have questions, I do need to run them,
but please shoot me up to my Twitter.
And I'm going to, oh, sorry, Ron,
I wasn't trying to talk over you.
I think my latency was a little off,
but I was just going to say, we'll let you run
and please, you know, get to safety.
And let me also say, we have a big network
of DSI nerds in LA.
And so anyone in LA who's dealing with the fires
in the DSI community and
needs support, please reach out to me and we'll see what we can do to connect you to kind folks
in the area. Rohan, I really got to say to you as a long COVID patient, God bless you, sir. Thank
you so much for what you're doing. And like I said, as Aragon said, yeah, you have my sword, sir, I will do anything
I can to help your project. And on a personal level, I'm just so impressed by your ability
to kind of go back and forth from, you know, this kind of complex virology to the experience
of patients to public health. And, you know, as we're kind of trying to launch this show
to really, you know, at a time when there's some stuff going on in the world that ain't
so good, like, you know, share that there's heroes like you out there, like fighting for patients.
I just, I don't know. What do you think, Erin? I feel like this couldn't have been a funner
conversation for, you know, in the lab in the new year. Completely. Yeah, this is such a great way
to kick it off. And also for our long COVID labs to be kicking off 2025, I'm so excited for what's to come.
More combos here.
Rohan, feel free to drop off.
We can do some closing remarks.
Thanks so much, guys.
Thanks.
Yeah, and for everyone, forgive me for shilling, but tell your friends, because this is really
the kind of thing where community is the capital.
And so we have a chance to make things happen
differently in the whole world, in the world of science than they would otherwise by just, you
know, retweeting, sending a link, you know, thinking of any cool nerdy person in your network
who you think might have fun talking about this kind of stuff. Let them know. We'll be back here
next week. And I think we can make some really incredible things happen in this space. And you know what else, Erin? We need a theme song. We do. So if anyone has
some musical abilities and is interested in helping us make a theme song for this,
definitely please reach out. Maybe that's our top request right now. But I recently retweeted a post I made earlier today of a whole bunch of
other awesome D-sized spaces happening over the next 24 hours. And even since I posted that,
I saw a few more happening. So there's so many incredible conversations going on right now. If you have some type of expertise, background experience, either in the sciences or in Web3 and aren't sure how to apply that to push different solutions forward, please reach out and we can point you into a project that might be most aligned with your interests.
can point you into a project that might be most aligned with your interests. Otherwise, keep
tuning into these spaces, come ready with questions, ideas, or referrals of awesome projects we should
be talking about. And we'll see you hopefully on more spaces tomorrow. Otherwise, back here
at the DCI Mike next week. We have a regular scheduled time every Wednesday, 5 p.m. UTC, noon EST.
And we'll keep doing these in the lab episodes as well.
Still figuring out the best time for that.
So if you'd like this time, let us know that.
If you hated this time and just liked the topic, but wished it was some other time, let us know that too.
So we can make these the most impactful combos they can be.
Yeah.
And yeah, wishing everyone a wonderful rest of your day.
Thank you guys so much for being here.
Let's go out and do some science, change the world.
Let's do it.
Have a great weekend, everyone.
Bye.
