Long-Hauler Syndrome: What We Know About Post-Covid Symptoms, Explained By a Top Disease Expert

One of the scariest aspects of Covid is that it seems to affect everybody differently. Some people get severe symptoms, others are asymptomatic and may never realize they have it — and now, doctors and scientists are seeing that some Covid patients who have seemingly recovered are experiencing lingering, long-term symptoms months later. Have you seen "Long-Hauler Syndrome" in the headlines? That's what we're talking about. 

Here to answer our questions about the syndrome is Dr. William Li, internal medicine physician, research scientist and author of Eat To Beat Disease — who's currently at the forefront of Covid research.

What is Long-Hauler Syndrome? 

"Long-hauler syndrome — or as it's now being called, long Covid or post-Covid — doesn't even have an official name yet because it's so new. But doctors are starting to see this with Covid survivors," Dr. Li says. "These are people who actually got sick and got better, but then they're actually having a scary constellation of symptoms months after they've gotten infected. And they can be super mild and annoying or it could be completely disabling. The symptoms can shift and change. Chris Cuomo shared his acute bout with Covid, but then he started to have post-Covid syndrome, as well as the actress Alyssa Milano, who's been talking about some of her symptoms, including hair loss."

"This is a picture of lungs before and after Covid," the doctor explains.

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"Not everybody has this, but some people, we believe, are actually carrying this kind of damage on the right hand side."

"We are making steps every day in figuring this out," Dr. Li continues, "and I think that's really important to understand. From a medical research perspective, we need to understand what's happening inside the body so we can help people recover. The virus attacks us and then it's gone, but it leaves a footprint that is damaged that we need to repair. The best analogy that I could give you is: think about having a dinner party with your good friends, and one of them brings a whole bunch of uninvited, rowdy guests that come in and they destroy the furniture and trash the house. And then everybody leaves — that's the coronavirus leaving your body — but the house is damaged, and you gotta sort of figure out how to put everything back. That's where we are with these long haulers. We think it's actually putting the house back together, so doctors have to unite, listen to patients and we need to pay close attention to what we're hearing, because this is a completely unexpected finding. It could have huge consequence to our health system."

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Who is at risk for long-hauler syndrome?

"This is a real condition," the research scientist says. "We don't know yet who's going to get it, but it's much more common than we thought. And you can get these symptoms — and this is important — whether you've had a mild case of Covid or a severe case of Covid. Interestingly, we talked about fever in the early part of this pandemic. Only 7% of people who have this long haul said they even had a fever in the first place. This is why we have to all be careful." 

What parts of the body does long-hauler syndrome affect?

"There are three things that we're learning that seem to be problematic," Dr. Li explains. "Blood vessels are involved and that's what I study. Inflammation, which we already know is not good for our bodies, and our nervous system."

"One of the biggest areas of concern is the heart," he continues, "and we're beginning to see symptoms like racing heart or palpitations. A heart normally beats a little bit faster when you're running or exercising, but it should beat on a regular basis, and when a heart rears up and goes fast, it could be a real problem. There is one study from Germany that showed that up to 70% of people who recovered from Covid can actually have changes in their heart, and we don't know if it's reversible or permanent. And it's consistent with what we're finding out in autopsy. We don't know if this happens to everyone. These are the most seriously affected people, but it wakes us all up to basically say that we have to actually be careful."

"We're also seeing brain fog, which is another major disabling symptom which is tied to the nervous system. Young people can be affected, too." 

Is there any good news, according to Dr. Li? 

"We have the power of medical research and science on our side," he says. "And if you've actually gone through Covid and you're having symptoms and you're watching the show, then what you need to do is advocate for yourself. Covid's already been kind of a DIY experience from the get-go, but there is support out there. What's really amazing is there are non-profits with resources. There's one group called Survivor Corps, founded by patients that are mobilizing themselves for the answers. You can also look for medical clinics that are now starting to specialize in post-Covid recovery."

"We have to remember one positive thing," the doctor continues. "We are our own best caretakers of our health. Number one priority: don't get Covid in the first place. So we have to keep wearing a mask and washing our hands and social distancing. And don't forget, the principles never change. Get good sleep, stay active and eat great food."