Hannah Davis: A 360° on Long Covid

TRANSCRIPT

Eric Topol (00:00):

Hello, this is Eric Topol, and it's really a delight for me to welcome Hannah Davis who was the primary author of our recent review on Long Covid and is a co-founder of the Patient-Led Research Collaborative. And we're going to get into some really important topics about citizen science, Long Covid and related matters. So, Hannah, welcome.

Hannah Davis (00:27):

Thank you so much for having me.

Eric Topol (00:29):

Well, Hannah, before we get into it I thought because you had a very interesting background before you got into the patient led research collaborative organization with graphics and AI and data science. Maybe you could tell us a bit about that.

Hannah Davis (00:45):

Sure. Yeah. Before I got sick, I was working in machine learning with a particular focus on generative models for art and music. so I did some projects like translating data sets of landscapes into emotional landscapes. I did a project called The Laughing Room, where there was a room and you went in and the room would listen to you and laugh if it thought you said something funny, . and then I did a lot of generative music based on sentiment. So I, I did a big project where I was generating music from the sentiment of novels and a lot of kind of like critical projects, looking at biases in data sets, and also curating data sets to create desired outcomes in these generative models.

Eric Topol (01:30):

So, I mean, in a way again, you were ahead of your time because that was before ChatGPT in November last year, and you were ahead of the generative AI curve. And here again, you're way ahead in in the citizen science era as it particularly relates to the pandemic. So, I, I wonder if you could just tell us a bit I think it was back, we go back to March, 2020. Is that when you were hit with Covid?

Hannah Davis (01:59):

Yes.

Eric Topol (02:00):

And when did you realize that it wasn't just an acute phase illness?

Hannah Davis (02:06):

for me, honestly, I was not worried at all. I, my first symptom was that I couldn't parse a text message. I just couldn't read it, thought I was tired. an hour later, took my temperature, realized I had a fever, so that's when I kind of knew I was sick. but I really just truly believed the narrative I was going to get better. I was 32 at the time. I had no pre-existing conditions. I just was, you know, laying around doing music stuff, not concerned at all. And I put a calendar note to donate plasma two weeks out, and I was like, you know, I'm going to hit that mark. I'm going to donate plasma, contribute, it'll be fine. And that day came and went. I was still, you know, pretty sick with a mild case. You know, I didn't have to be hospitalized.

(02:49):

I didn't have severe respiratory symptoms. but my neurological symptoms were substantial and did increase kind of over time. And so I, I was getting concerned. Three weeks went by, still wasn't better. And then I read Fiona Lowenstein’s op-ed in the New York Times. They were also very young. They were 26 at the time, they had been hospitalized, and they had this prolonged recovery, which we now know as Long Covid. and they started the Body Politic Support Group joined that saw thousands of people with the same kind of debilitating brain fog, the same complete executive functioning loss, inability to drive, forgetting your family members' names who were all extremely young, who all had mild cases. and that's kind of when I got concerned because I realized, you know, this was not just happening to me. This was happening to so many people, and no one understood what was happening.

Eric Topol (03:49):

Right. extraordinary. And, and was a precursor, foreshadowing of what was to come. Now, here it is, well over three years later. And you're still affected by all this, right?

Hannah Davis (04:02):

Yes. Pretty severely.

Eric Topol (04:04):

Yeah. And I learned about that when I had the chance to work with you on the review. You were the main driver of this review, and I remember asking you, because I, I didn't know anyone in the world that was tracking Long Covid like you and to be the primary author. And then you sent this outline, and I had never seen an outline in all my years in academic medicine. I never saw an outline like this of the review. I said, oh my God, this is incredible. So I know that during that time when we worked on the review together, along with Lisa McCorkell and Julia Moore Vogel, that, you know, there, there were times when you couldn't work on it right there, there were just absolutely, you would have some good days or bad days. And, and that's the kind of, is that kind of the way is, how it goes in any given unit time?

Hannah Davis (04:55):

I think generally, I, I communicated as like 40% of my function is gone. So, like, I used to be able to have very, very full days, 12 hour days would work, would socialize, would do music, whatever. you know, I, I have solidly four functional hours a day. on a good day, maybe that will be six. On a bad day, that's zero. And when I push myself by accident, I can get into a crash that can be three to seven days eas