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One Condition Offers Possible Diagnosis On Plight Of COVID-19 'Long Haulers'

SCOTT SIMON, HOST:

Thousands of people known as long-haulers have been suffering from COVID-19 symptoms months after they contracted the virus. Although they no longer test positive for the virus, many still experience chronic fatigue, brain fog, hair loss and other symptoms. There may be an answer as to why this is happening. For some. It's a condition called POTS, which we will have explained. It affects about 1% of the population. But there are treatment options. Lauren Stiles joins us. She's president of Dysautonomia International. That's a nonprofit dedicated to improving the lives of people with autonomic nervous system disorders. She's also research assistant professor of neurology at Stony Brook University School of Medicine in New York. Thanks very much for being with us.

LAUREN STILES: Thanks for having me.

SIMON: And POTS is short for...

STILES: Postural orthostatic tachycardia syndrome.

SIMON: And that means what?

STILES: POTS is an autonomic nervous system disorder. And most of us don't have to think about our autonomic nervous system when it's working properly. But it's the part of the nervous system that controls our heart rate, our blood pressure, our digestion and many other automatic bodily functions. So people with POTS have a problem with their autonomic nervous system, and it can cause lightheadedness, shortness of breath, fatigue, headaches, GI motility problems and much more because the autonomic nervous system regulates all of your different organs and systems in your body. So when it's not working properly, you can get a lot of different symptoms.

SIMON: And, Professor, what makes you see a connection between long-haulers, as they're called, and POTS?

STILES: Well, the research is still preliminary, but in COVID, it's looking like a subset of these post-COVID syndrome patients have an autonomic nervous system problem. And some of those patients are meeting the POTS diagnostic criteria. So at least with those patients, we do know that there are some treatments that should be able to help them feel somewhat better.

SIMON: Treatments such as...

STILES: The most important initial treatment most people are given is to increase their salt and fluid intake. And this is because people with POTS actually have low blood volume. They actually don't have enough blood, which contributes to their symptoms and - like dizziness and lightheadedness. After that, we usually add a very tailored, specific exercise plan, not just jumping on a treadmill right away but a reclined exercise program. And then, often, medications also have to be added to the treatment. Most patients see some improvement with treatment over time, but it isn't magical improvement.

SIMON: I freely confess I had not heard about POTS until this week. Are you concerned that not enough is known about it, and it is so unfamiliar, very good doctors who are treating COVID patients won't know about it and won't know what to look for?

STILES: Right. So before COVID, POTS patients had an average diagnostic delay of over four years. And the average patient saw over seven doctors before they were diagnosed with POTS. So it looks like we're seeing an increase in awareness and recognition that this is a problem in a subset of the COVID patients. And with that, you know, we should be able to help these people by getting them diagnosed as soon as possible.

SIMON: How should patients speak up for themselves if they need to?

STILES: So if you're feeling very lightheaded, and you're having lots of tachycardia, which is a racing heart, your doctor can check your heart rate and your blood pressure laying down and then standing up again. That's called orthostatic vitals. And any doctor's office can do this. And that can give your doctor an initial hint as to what might be going on.

SIMON: Professor Stiles, is there a group of the population that seems to be more susceptible than others?

STILES: So the average age of a POTS patient is somewhere between, you know, 15 and 50. And it's 90% female.

SIMON: Ninety percent.

STILES: Yes, it's a very female predominant condition. So we don't yet know if those same numbers will be reflected in the COVID population because, obviously, COVID itself is affecting adults and children in a different way. And so we need research to understand if that same demographic profile is who is impacted with post-COVID POTS.

SIMON: Lauren Stiles is president of Dysautonomia International. Thank you so much for being with us.

STILES: Thank you for having me. Transcript provided by NPR, Copyright NPR.

Corrected: December 9, 2020 at 12:00 AM EST
An earlier headline incorrectly said a "new" condition could shed light on why some people still suffer symptoms months after contracting COVID-19. The condition, postural orthostatic tachycardia syndrome, is, in fact, not new.