Should People Be More Worried About Long COVID?

This transcript has been edited for clarity.

Maggie Fox: Welcome. I'm Maggie Fox, consulting editor to WebMD and Medscape. I'm here with Dr Eric Topol, editor-in-chief at Medscape. We're talking about long COVID, which affects at least 13% of people after they've been infected with COVID, according to the US Centers for Disease Control and Prevention. That adds up to millions of people who could be affected by severe fatigue, heart symptoms, brain symptoms (known commonly as brain fog), and a range of other problems.

There's no specific treatment, and it's not clear how long some of these people will be sick. Yet, Americans in general appear to have largely given up on protecting themselves from COVID. Dr Topol, I wanted to talk to you about that. Is that something people should be thinking about when they're deciding what their own risks are?

Eric J. Topol, MD: Well, first, Maggie, it's great to be with you, particularly on this important topic. Long COVID is not getting nearly enough regard of its importance and, as you mentioned, the lack of any treatment. It's a really vexing situation where we have millions of people, and we don't have anything to offer except supportive type things. The real issue here is that at the moment, we aren't doing enough to give the recognition to these people that this is a serious matter that we want to avoid.

The only way to avoid long COVID is to not get infected, or, if you've had COVID, to not get infected again because there's still risk even if you've had a prior infection. Why should you go all out to keep yourself protected? Because you don't want to get this, and the problem is that it's unpredictable.

It chiefly affects people with mild to moderate COVID. People in their 30s and 40s are the group that are showing up with these protracted symptoms. They can be quite debilitating. There's only one surefire way of preventing it, which is not getting infected. The vaccine and boosters provide some protection, but it's not entirely clear whether it's 50% (more or less). But there is some protection, and that's another reason to stay up with vaccines and boosters.

Fox: So what I hear you saying is that people can't predict if they're going to be the ones who get long COVID or not. Being young and healthy doesn't protect you.

Topol: Right. I haven't had COVID, and I don't want to get COVID. I'm an older person, but I'm not as afraid of dying from it or even of the hospitalization as much as I am of getting long COVID because it's unpredictable. We know a bunch of the triggers for our immune systems going haywire, such as persistence of the virus in reservoirs in our body or remnants of the virus or autoimmunity that's set off by the infection.

We know some of the biology of this condition and how it resembles myalgic encephalomyelitis/ chronic fatigue syndrome. We know that much, but the problem is that it's a roulette wheel. If you get the infection, even if you start getting better days later, you could, a month later, start getting the symptoms of long COVID. And that's what is so unpredictable.

Fox: And these symptoms can be really debilitating, right? You don't just feel a little sick. Some of these people are very fatigued, can't think straight, can't exercise at all. What are some of the other symptoms?

Topol: Well, I have not only colleagues but patients who I'm following. It's just remarkable how bad this can be. Some are young, in their 30s. They were athletes, and now they can barely walk a block or two. They're just so profoundly tired. They have symptoms such as chest pain, joint aches or severe headaches, and as you mentioned earlier, brain fog.

There are about 50 different symptoms that are part of the mosaic. It seems to separate into two different major categories; one, which is the immune system with the symptoms that were just mentioned. The other is the peripheral nervous system inflammation — the dysautonomia. They stand up and all of a sudden, their heart rate takes off to 100, 120, or more. They get lightheaded, and that's holding them back.

That seems to be more of the peripheral nervous system, whereas the more generalized inflammation is perhaps more common. But no matter which way you go, it can be highly compromising to daily activities, no less to work. People I know who got infected in March or April of 2020 are still suffering 2-2.5 years later. They may have had some improvement, but they're still suffering.

It's a very serious matter. And we're not making the progress that we need to try to come up with remedies. We don't even have a biomarker to be able to assess improvement through objective data and tracking. So we're still way behind.

Fox: This sounds like a very serious condition that people should be thinking about. But so many people seem to be willing to give up, in general, on the threat of COVID, even the threat of acute COVID. Why is that? Is this a messaging failure? And if so, whose failure is it?

Topol: Well, I don't know. One thing is that the rate has gone down with the Omicron variant. Whereas it was clearly in double digits (12%-15%) earlier, it appears to be more in the 6%-7% range now. So the frequency of knowing people — family members and friends — who are affected is lower recently compared with the past year. That may be one of the reasons why the awareness is not as high, but it could also be because a lot more people are vaccinated and staying protected with boosters. That does help. Vaccines and boosters may not only reduce the incidence of long COVID but they may reduce its severity or hasten recovery. It may be that it's less of a threat than it was earlier in the pandemic, but it's still a major threat. If you take 6% — or whatever it is — of people with the current variants, it's still a lot of people that are getting hit with long COVID.

But otherwise, we have not done nearly as well as we should with the awareness. We know, of course, many places around the country have set up multispecialty long COVID clinics. But they can't possibly serve the huge burden of people who are suffering now. Some will improve. Some will recover fully, of course.

A big nationwide study in Scotland showed that a limited number of people have full recovery. Most of them, 40-something percent did not recover fully between 4 and 6 months out. That gives you a sense of how long this can last, and I wish we were making more progress.

Fox: You're painting a picture of millions of people possibly affected. They're sick for a long time. Do you worry about the risk of having millions of people affected by long COVID perhaps for years, unable to work or only able to partly work?

Topol: Yes, this is the long tail of the pandemic, the long residual. People have focused on deaths and hospitalizations as the severe outcomes throughout the pandemic only because we didn't prospectively get data about recovery from the acute illness.

If you go forward... As we get further and further along in the pandemic and eventually achieve containment of the virus, what do we have to look forward to? Well, unfortunately, the sobering reality is that we're going to have millions of people who are still, in one way or another, having these enduring, very troublesome symptoms. And hopefully before long, we'll come up with treatments that will reduce the toll and help hasten the recovery. We desperately need that.

The United States has put in more than $1 billion to NIH to come up with treatments. Hopefully, they're going to click at some point.

Fox: Are people hearing that message, though, perhaps and thinking, well, even if I got long COVID, they're working on it, and I'd be cured at some point? Could that be playing into the psychology?

Topol: If you talk to the folks who are affected, and they're so strongly compromised from what their baseline was before long COVID, they would not think in those terms, that it's okay because there will be a treatment. It's very clear that this is a group of people who wish they'd never had to experience these symptoms and are eager to get back to their lives and full ability to function.

Fox: What's the message to people who haven't gotten long COVID yet or haven't even gotten COVID yet? What would you tell them about their risk?

Topol: Well, first, it's been exaggerated that everyone's going to get COVID. I want to debunk that. Not everyone has to get COVID or get COVID multiple times. That's a defeatist attitude.

You still can protect [yourself] from getting COVID. There are simple things you can do, whether it's high-quality masking and being careful about indoor settings and groups and that sort of thing, but also getting your vaccines and boost as much as you can to stay maximally immune protected against the virus.

We're not doing that in general because, in part, the long COVID awareness is not nearly high enough. It is taken seriously by the people who are affected but not by the medical community or the general public.

Hopefully, we are going to change that over time, and that will motivate people to be much more careful and not have this defeatist attitude, thinking, I'm going to just get it. I'm not going to worry about protection. We know those things work.

Fox: And people who say, "Well, I've had it once it wasn't so bad, so I'm not so worried about it," again with the long COVID, people don't know if maybe the second or third time they're infected, that's when they'll get long COVID.

Topol: That's right. Just because you've had it before doesn't mean you're not susceptible. And that's something to emphasize because there are people who've never had COVID. And all those people who've had an infection who have a false confidence that they're protected from getting long COVID. It's not true at all.

Fox: What would your final message be to the physician community and to the community in general?

Topol: Well, it's time to really gear up the awareness, the respect, and the empathy for people who are suffering. We have to be as supportive as we possibly can and do whatever we can to accelerate effective therapies. I'm confident that we will get to the bottom of this, but it isn't going to be soon enough.

We're so far along in this pandemic. People were first getting hit with long COVID in spring 2020. And here it is approaching winter 2022, and nothing has been validated. We've got to rev this thing up and come up with treatments.

We'll probably do better on the dysautonomia sooner than on the mosaic of immune symptoms because there are things in the pipeline that appear promising. But we've got to do everything we can to aggressively pursue effective therapies.

Fox: Dr Topol, it's such a pleasure speaking with you. Thanks for joining us today to talk about this.

Topol: Thanks, Maggie. Hopefully we'll make some progress here.

Fox: Let's hope.

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Cite this: Eric J. Topol, Maggie Fox. Should People Be More Worried About Long COVID? - Medscape - Oct 20, 2022.