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As U.S. COVID-19 Cases Ease, Questions Remain About Lingering Effects

STEVE INSKEEP, HOST:

The easing of the pandemic, at least in the United States, gives us a little more head space to think about the aftermath. And part of the aftermath is sure to be the lingering health effects of COVID. Let's think about this for a minute. Thirty-three million official COVID cases in the U.S. alone, and some of those people, maybe millions of them, have had symptoms for more than a month after their initial illnesses. For at least some of those people, we can say there is a diagnosis and treatments that can help.

NPR's Allison Aubrey joins us, as she does most Mondays. Hey there, Allison.

ALLISON AUBREY, BYLINE: Good morning, Steve.

INSKEEP: Let's start with the big picture. How many people are experiencing long-term health problems here?

AUBREY: You know, the estimates really vary. But surveys suggest up to 10% of people have lingering health problems. Now, there's no clear system for tracking this, so the numbers just aren't concrete. And I'd say part of the frustration, Steve, is that there's such a range of symptoms, from fatigue and brain fog and shortness of breath. There just haven't been easy answers. Doctors haven't been able to say when or if people will get better.

This was the situation that Jennifer Minhas was in in the spring of last year. Let me tell you about her. She's a 54-year-old nurse. She lives in San Diego. She says her brain fog was so bad that she couldn't, like, key a four-digit code into her phone.

JENNIFER MINHAS: I wasn't really able to complete a full workday. My head just felt heavy. I couldn't sit up at my desk. I had, like, profound fatigue. And I could sit there making toast, just standing up making toast, and my heart rate's 125.

AUBREY: Now, this is an unusually rapid heartbeat. And it would happen every time she stood up. Her heart would just race. And this was really strange because before COVID, she had been very active and fit. But it turns out that this was a key symptom, this rapid heartbeat, that eventually led doctors to diagnose her with a syndrome called POTS.

INSKEEP: Which doesn't sound too appealing - is that an acronym?

AUBREY: Yeah, it's a mouthful. It stands for postural orthostatic tachycardia syndrome. Now, tachycardia is just a medical term for a rapid heartbeat. And it's basically a blood circulation disorder. And if you have never heard of it, you are certainly not alone. The syndrome predates COVID. It's known to come on after viral infections. It's estimated that about one to 3 million people have it. But here's the strange part. A lot of doctors don't know about it because it's only in recent years that the syndrome has gained any recognition at all.

I spoke to Pam Taub about this. She's a cardiologist at UC San Diego.

PAM TAUB: POTS happens - many people after a viral infection. So when I started seeing some of these COVID long-haulers, I immediately recognized that they were suffering from POTS. But, you know, POTS has always been a condition that's been dismissed as being more of a psychiatric issue. But that's changed as we've done more research and have really shown that there is real biology behind POTS.

AUBREY: The theory of what happens is that after a virus, the immune system mistakes antibodies to the virus as something harmful, and they attack the part of the nervous system that regulates a whole bunch of functions in the body, including breathing, heart rate and blood pressure, and that's why all these symptoms. But the good news is that there are treatments that can help people feel better.

INSKEEP: Well, I want to ask about the treatments. But first, you - we just heard someone say that this was dismissed as a psychiatric issue. Why would that be?

AUBREY: Well, for reasons unknown, the condition affects a lot more women than men. And women tend to develop autoimmune diseases more often than men generally. Dr. Taub says before the biology of this had begun to be understood, before it was recognized that a lack of sufficient blood flow caused the brain fog, the symptoms could be mistaken for, you know, stress or anxiety or the idea that it was all in your head.

TAUB: Well, unfortunately, I think what happens is - even before COVID, we'd seen that our POTS patients were on average having about a one- to two-year delay in diagnosis. And the reason is their symptoms are very nonspecific. They're typically young women. And you know, they start complaining of things like brain fog, fatigue. And they're usually dismissed.

INSKEEP: Is she's saying politely that women were just not taken as seriously by doctors as maybe if they were men?

AUBREY: That's what she's saying. And there's survey research to show that typically women had a longer time to diagnosis than men. And POTS patients see five or more doctors before they're diagnosed. And Jennifer Minhas can relate to all of this. Her doctors did lots of heart tests to make sure her heart was OK. And it was. She had no clots, no heart attack, no arrhythmias. So at first, her doctors didn't know what to make of her condition.

MINHAS: And so, yeah, my primary doctor first thought it was anxiety. That's not my typical personality (laughter). So yeah, it was disconcerning (ph).

INSKEEP: Although it must be a relief to finally get a diagnosis and know that it's not all in your head, so to speak. So what treatments has she received?

AUBREY: Well, the first treatment is to start drinking a lot of fluids, basically just a lot of water. It sounds so simple, but this helps to expand the volume of plasma. Given the dysfunction in the autonomic nervous system, the body's ability to regulate blood flow is just damaged in people with POTS. Exercise can also help. And Jennifer Minhas says what's also been helpful for her is a medication that's called ivabradine which slows the heart rate. She says she noticed the effects right away.

MINHAS: Within a couple days, I already started feeling better. Your body just feels like you're getting better blood flow, you know? Your brain's working better. Your muscles work better.

AUBREY: And this makes it easier to exercise and just to go about daily life. So she actually is doing better. Now, many POTS patients require ongoing care. Symptoms can wax and wane. But she has improved.

INSKEEP: Of those several million people with lingering effects of COVID, how many have this specific syndrome?

AUBREY: You know, the prevalence just is not known. There's no central system to track this. I mean, the experts I've spoken to, including at Johns Hopkins and Stanford where there are POTS specialists, tell me they've seen more patients with this post-COVID. Now, there are specific diagnostic tests. So certainly, not everyone with brain fog will be diagnosed with this. And there are many, many other post-viral health problems that are unrelated to POTS. The National Institutes of Health recently announced $1.1 billion in research funding to better understand the myriad causes and potential treatments for all of these people with long COVID.

INSKEEP: Allison, if somebody is listening at home and they haven't been diagnosed with this but they're thinking, wow, maybe that's me, what should they do?

AUBREY: You know, I think it's worth bringing this to the attention of your primary care doctor. There are referral clinics for people with dysautonomia. POTS is a form of dysautonomia. And probably the best thing would be for a doctor to decide if the symptoms fit enough that a referral would make sense.

INSKEEP: Allison, thanks for the update. Really appreciate it.

AUBREY: Thank you, Steve.

INSKEEP: That's NPR's Allison Aubrey.

(SOUNDBITE OF THE ALBUM LEAF'S "BLANK PAGES") Transcript provided by NPR, Copyright NPR.