David Sousa, MD, has been seeing patients suffering from long COVID-19 at Morristown, N.J.-based Atlantic Health's COVID Recovery Center for nearly two years.
An estimated 16 million adults in the U.S. have lingering symptoms after COVID-19 infection, and up to 4 million people are out of work because of their symptoms, according to an Aug. 24 report from the Brookings Institute. Experts and patients say the government is not providing enough relief or resources for what one advocate called the "greatest mass-disabling event in human history."
A group of COVID-19 survivors with long-term symptoms protested outside the White House Sept. 19, calling for more federal support for those with the condition after President Joe Biden said "the pandemic is over" in remarks he has since clarified.
Dr. Sousa spoke with Becker's last October — alongside Fred Cerrone, MD, another physician at Atlantic's long COVID-19 clinic — about their experiences one year after the clinic's inception. Nearly a year later, Dr. Sousa checked in with Becker's about the current status of the condition.
Editor's note: Responses have been lightly edited for length and clarity.
Question: Have you seen long COVID-19 symptoms evolve over the pandemic? If so, how?
Dr. David Sousa: The one thing I've seen with COVID is that it's a heterogeneous disease that people experience differently in the acute process and the way they experience COVID for those who develop long-term symptoms. I do think that it's envolved in a sense that we know things like vaccinations or other things that decrease the severity of COVID tend to minimize the risk of long COVID. But in terms of the symptomatology, the way we're evaluating people, I think it really is a patient-specific thing, where people's bodies experience this disease differently.
Q: Are there any most common symptoms you've observed in the patients you treat?
DS: One of the most common symptoms we see is fatigue. Restlessness is another. We have [also] been seeing a lot of anxiety, depression, that sort of stuff. Those are the most common symptoms that we see, but it's been pretty consistent from the beginning to now.
Q: Since we spoke last year, do you have any updated stats on the number of vaccinated patients in your clinic?
DS: I don't have those exact numbers. We're trying to get our data set to give us those numbers.
Q: How many long COVID-19 patients is the clinic seeing weekly?
DS: I'm not sure if it's sort of a summer low or if it's a change in symptomatology. It's really tough to tell what these patterns are. But we were previously seeing about 10 to 12 patients a week, and for the past couple of months we've been down to maybe six patients a week. I don't know that that is anything we can draw conclusions off of yet. Because [during] summertime sometimes people are less likely to see doctors, so we don't know whether that's a change in a disease or whether or not that's just a matter of scheduling and patient preference. That's one of the things that we have on our radar that we're trying to tease out.
Q: How have protocols at the clinic changed since its inception?
DS: They haven't changed a lot. We have had more team members, like we have a multidisciplinary team that is involved [now]. We've involved our speech and language pathologist to help with brain fog, to do neuro testing, neurocognitive rehab. But really a lot of addressing long COVID is working out a lot of the symptoms the same way you would work it out if they didn't have COVID and then trying to provide the necessary services. The other thing that we've added is we're enrolling some patients with some symptoms into our home or rehab programs.
Q: What developments have been made into the study of long COVID-19?
DS: That's still to be determined. There are a lot of different studies coming out now, describing the population of people, trying to look at [the] mechanism of disease, which is still not well understood. We think about something that just started in 2020, and how long it takes us to really figure out mechanisms used for other conditions. I think we're still in the early stages.
Q: Going off of that, what else is still unknown?
DS: I think the one thing that both medical providers and patients want to know is mechanism. A lot of times in medicine, what you're trying to do is try to treat the root cause of problems right. And I think the exact mechanism of COVID is still unknown.