I want to talk to you about, actually sent in some questions about this to NIH, but then we hit the shutdown and you guys weren't able to respond to it. So, but since I have you here, what I sent in was there was a New York Times article about a study and it was in one of the Lancet journals. So I think it's Lancet's infectious diseases. So it's a good journal. And it talked about long COVID and what it did was, what the study concluded was that if you were vaccinated, you were less likely to get long COVID. And so when I, and so this appears in the New York Times and I already knew when I, cause so the NIH put out a bunch of funding for long COVID. A friend of mine who's at one of the big research institutions on the East Coast was a part of applying for that grant that their university won. Got a big study center grant and I was talking to this researcher later and was like, how are you studying long COVID because they haven't even defined what it means right now. So like they were passing out money from the NIH to study something that did not even have a medical definition. So I knew this was going on. So when I read the New York Times piece, I pulled up the study and I looked at it and here's what I found when I look at the methods, what it tells you is that they studied long COVID in patients from people who were vaccinated, unvaccinated, from January of 2022 till January of 2024. And they were studying what they called PSC, which is a way of defining long COVID. But that definition for long COVID was not even put out until May of 2023, more than halfway through the study. And I was, so I read this, I'm like, how are you studying something that you don't even know what it is that you're studying until more than halfway through the study? What is the value of this study? First off, and then what is, how did the New York Times not read this study the way I did and realize that this study is kind of bunk. And I feel like that a lot of we put out all this money to study long COVID. There are people that I know who have long COVID. And from the beginning, I and other people that I've spoken to researchers have all been concerned about what the value is of the data we're getting back when we were like, cause this guy over here is studying long COVID that he thinks means this, this other researcher is studying long COVID over here and they define long COVID with all these other things. It's not like depression where if you're a guy at University of Washington and you're studying depression and you're a guy at Yale University, you're studying depression, they're both studying the same things. They know what it means because it has a definition. Everyone's just studying like their own particular idea of what they think long COVID is. And so what is the value of all that data when you try to combine it together? Because everyone's studying a different thing. I mean, so long COVID is one of those things where like, we spent, I think, one and a half billion dollars or more between 2020. Yeah, I mean, it's a lot of money. And, you know, it's one of those things where like, there's patients are understandably frustrated. A lot of the money that was spent on long COVID and NIH between 2020, 2021 and 2025 or 2024 was on trying to get a definition of long COVID.
As you say, that study that, you know, like I looked at that study, the Lancet study, and it struggled with the definition of long COVID. It called this post-acute sequela of COVID-19 PASC. It was like one of these, was like they defined it based on symptoms. And some of the symptoms are quite nonspecific, right? Do you have headaches? Are you fatigued? So the definition of long COVID is, it's still challenging. I've seen now some recent work that, because the key thing is like, how do you distinguish long COVID from other post-acute sequela of infectious diseases? There are things where you can get the flu and you can get longer-term outcomes from the flu, right? There are other disease conditions that sometimes produce symptoms that overlap substantially with long COVID. I know, Lyme disease, for instance, I've heard, right? And others, ME-CFS. ME-CFS, you know, was another one that like has very, very, you know, someone that I know thinks they got ME-CFS because they got a viral infection. They think that's what triggered the whole thing. An old med school colleague of mine just did a really interesting study using on Epstein-Barr virus and some long-term consequences of Epstein-Barr virus. Anyway, so the point is that it's very difficult to distinguish long COVID from some of these other things. And it's important to be able to distinguish because the treatment that you might have might be different for long COVID versus long flu or long EBV or whatever, right? And we didn't, spent a billion and half dollars. That billion and a half dollars did not produce a clean definition. And people are still arguing over the definition. The person that I first spoke about this with on the, at the university on the East coast, the MD, PhD researcher out there, he pulled out of this study specifically because he saw these problems coming. He helped to win the grant and then he's like, I don't want to be involved in this. This seems like really messed up. I can't like, I'm going to go back to my regular research.
Yeah, well, I read that study. There were lots of problems that study when you identify is absolutely true, like, cause they, they didn't have a definition of long COVID until 2023, I think it was. And yet they use data from before based on clinical diagnoses, somehow inferring long COVID before the definition like a clean code existed. So it had some methodological problems like that. The bigger methodological problem with that study was that it looked at kids, but it looked at kids who had, who were like, went to the doctor because they had COVID. Well, most kids, I mean, COVID infection was really mild acutely for most kids. And so it wouldn't have necessarily produced a doctor visit. So they're missing a lot of people who never showed up to the doctor. A lot of kids who never showed up to the doctor, their denominators are wrong. Anyways, there were a lot of methodological problems with that study. Okay, so I want to ask you something about this because I this gets into it's like you've you agree with me that this this study had serious problems. But like, here's the thing that happened. That study made it into a very prestigious journal, right? And then it made it out of that journal onto the page of the New York Times. And I just feel like so much of the discussion we've been having around long COVID, which, you know, there's apparently millions of people with this condition, tens of millions of people with this condition in the United States. And we're having like, we're not even studying it effectively. And we're having these like weird, you know, misinformed discussions about it, like in the academic literature and in the media. I think it's very frustrating for people who have these, who really are sick and we didn't spend, I mean, I'll tell you flat out, I think we threw a bunch of money away from the NIH. We should have defined. We should have defined this condition first. When I first saw it, I was like, we should put out some money first so that the community agrees upon a definition of what they're going to study. Then we release more money. Once we agreed upon what we're studying, we have a definition of what we're studying. Then let's start to study. Even if the definition is wrong, let's agree upon a definition so we're all looking at the same thing. And I just feel like they just threw the money out and it's very frustrating.
