Validating Long COVID

Before COVID, I was a generative artist and musician, so I traveled a lot. I did a lot of workshops on introducing machine learning and artificial intelligence to people who didn't really know anything about it. That's not something I'm able to do anymore, unfortunately.

I got COVID in March of 2020. At the time, lockdown had just started. I really did not think I would be dealing with symptoms for more than 2 weeks but never could have imagined I just would never get better. The first time I heard about long COVID was in Fiona Lowenstein's New York Times op-ed, which was in mid-April 2020.

And in that op-ed was a link to a support group on Slack that they had created. And I joined that and there were thousands of people from the first wave -- almost all mild, acute cases, almost all younger people -- and realized that something really terrible was happening and people weren't talking about it.

I think one of the biggest misconceptions about long COVID is that it's continuing symptoms of COVID, and that's not true. A lot of symptoms of long COVID are symptoms of two illnesses that can happen after viruses. So I've been diagnosed now with something called myalgic encephalomyelitis and dysautonomia, which are two conditions that come after viruses, and that we should have been prepared for because every virus, not just COVID, causes at least some percentage of people to have these conditions.

The symptoms for this include, basically, a really high heart rate when I'm standing or sitting up, cognitive dysfunction, gastrointestinal issues, sometimes new onset allergies, and things like that. But the key symptom is called post-exertional malaise, and that's a very weird symptom. I had never experienced anything like it before getting sick.

If you've ever had a phone that doesn't hold a charge and you just have to constantly keep charging it, it basically feels like that in your body. So you can do a little bit of stuff, and then you have to go lay down. And then you do a little bit of stuff and go lay down. And it's very frustrating and that happens every day. It's just at what point does that happen?

So generally, when I get post-exertional malaise, I go into a blackout room. I'm generally wearing my sunglasses and noise-canceling headphones, so I can do a rapid decrease of the sensory input around me. I'll stay there until the post-exertional malaise is gone, which on a good day, can be 30 minutes, and on a bad day, it's the whole day.

Slack is a really great format for a support group because it has different channels. And they had a channel for data nerds, so I am a data nerd and I joined that channel. I met a lot of other people who eventually became the Patient-Led Research Collaborative. And we put out the first-ever research on long COVID responses, and that was enough to be able to bring to the WHO and CDC and say, look, this phenomenon is happening. We need to do something about it.

So one thing that was really magical and beautiful was that during this period, where our brains were changing so much, we still-- at least for me, I still found this avenue to be useful. Patients are just always ahead of the research community because you see trends in support groups and in talking to other patients. Though we have some understanding of why it happens, we don't totally understand how to treat it.

And we also funded a clinical trial. One of our main goals right now is to really try to speed up clinical trials. And I think we personally feel like we need to keep working on it because we're making a huge difference in this space and we want to feel like we have a chance of recovery and to not live our lives like this.

Currently, long COVID is the third-leading neurological illness in the U.S. One in 18 adults in the US has long COVID, about the same as diabetes. This is not an issue that is going to go away anytime soon. I'm really proud of the Patient-Led Research Collaborative because we've done a lot of work to improve the lives of people living with this condition. And I'm really grateful for my co-leads, in particular. I often say we were just sharing one brain. I'm very, very honored to be named a Health Hero.