Scripps Research computational biologist Julia Moore Vogel recently moved back to upstate New York to get help from family members with her severe fatigue caused by long COVID, a condition she has coped with since July 2020.
The former distance runner estimates the disease has reduced her stamina by 90%, forcing her to use an electric wheelchair to do physical activities that used to be effortless. But Vogel has found ways to keep participating in science, helping to push the quest for potential treatments forward. One trial now underway uses wrist-worn motion-tracking devices to help people with long COVID better pace themselves to reduce the debilitating exhaustion that long COVID often causes.
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“What we’ve learned is that there seems to be this sort of cliff you can fall off of that we call post exertional malaise,” Vogel said. “If you do too much all at once, you can really exacerbate your symptoms.”
The device, she said, is analogous to a cellphone battery, helping to estimate when a person’s energy reserve is near the edge of that exhaustion cliff.
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“A lot of people have found that, through continuous monitoring, they can see when their body battery is getting low before they even feel it and proactively rest,” Vogel said.
With a doctorate from Cornell University and participation in multiple research communities, Vogel, 39, has a rare perspective on the debilitating condition that impacts millions worldwide.
As the fifth anniversary of the pandemic in California arrives, she took time to discuss the challenges experienced daily by those who continue to experience severe symptoms months or even years after coronavirus infection.
Q: Do we really understand how many people have long COVID and, more importantly, how many have been fighting this syndrome for many years?
A: The best data out there for overall incidence is the Household Pulse Survey from the CDC (Centers for Disease Control). They’ve stopped collecting the data now, but it says that between 5% and 6% of U.S. adults have long COVID at any given time. But I think this is probably an underestimate, because so many people are not testing for COVID anymore, and I’ve had many people say to me, ‘oh yeah, I never considered this as long COVID until you put it in front of me.’ A lot of people just don’t make the connection. In the first year of the pandemic, there was this hashtag “count long COVID” because you could see how many cases, how many hospitalizations, how many deaths, but long COVID just wasn’t tracked, it was nowhere.
Q: How much progress has been made over the past five years to determine the true cause or causes of long COVID?
A: Amazing progress has been made in basic biology. Micro blood clots, immune system dysregulation and dysfunction of the microbiome in the gut and mitochondria inside cells have been documented. We don’t really know yet what’s the chicken and what’s the egg, and we don’t know if it’s different across different people. Those are all questions we hope will be figured out through more research and clinical trials.
Q: What is the current research landscape around long COVID?
A: Our wrist-worn wearable trial has been live for a year, and we’re actually at the point of analyzing the data now, and we have a pharmaceutical trial that’s in the planning stages now. Once the FDA gives us the green light, we’ll be able to talk about it publicly. There are probably 50 trials in the planning stages or early stages for long COVID, and I feel like we’re finally, just this year, starting to make some progress toward understanding treatments. When I first got sick, I thought, ‘OK, I’ll just need to hang on for three to five years, and then we should have some symptom management, but I feel like we’re still at that point where we’re three to five years away.
Q: We recently heard from a local resident with long COVID that a trial that seemed to show some significant results in some patients was summarily canceled before it could finish. What has held back trials so far?
A: I’m actually helping co-author a piece about this phenomenon. This has happened in about five different trials where there were reports on social media of people saying, “I’m in this trial, and I feel amazing, this is definitely working,” but the trials are either underpowered overall or it’s only like 10% of people who are benefiting. We need to better understand this phenomenon, because it’s really disappointing when a company goes out of business and the data just kind of evaporate. We really need to know more about the differences between people who are responding and who are not responding. I do have hope for the RECOVER-TLC initiative at the National Institutes of Health. I’m on one of the committees that’s reviewing agents to prioritize, and they have received about 400 submissions. They have the funding to do really well-powered trials, and I’m optimistic about that.
Q: What do you wish that the average American understood about long COVID?
A: My primary wish is that it be understood that anybody can get it after COVID infection, and that includes reinfection. If you got out of your first infection free and clear, you’re still at risk. My main ask of people at this point is to just put on a mask in places like doctors’ offices, grocery stores and public transit. In addition to people with long COVID, there is the immunocompromised group that is also at a really high risk of death if they become infected, and for those folks, vaccination often doesn’t work well. Many don’t often go out in public, but they still need to go to their doctor’s office or to get food. I would also tell the general public that if they know someone with long COVID, to provide community support to the extent they can. If that’s bringing over a meal once a week or folding their laundry for them or whatever it is, ask what you can do to help them, because it’s really hard to ask for help, and it’s even worse to ask and be told no. Being that person that someone can rely on in the absence of broader societal support can make a world of difference.
Q: What would you do if you were made national long COVID czar?
A: I would improve how we count cases, I would focus on finding new treatments and I would focus on streamlining the disability application process. It can take years and years for many people with long COVID to prove that they’re disabled enough to get the disability support that they have paid into the system for and are entitled to receive. I would also work to get the Long COVID Moonshot bill passed, including substantial investment in expanding the clinical trial portfolio so that we can identify effective treatments.
