Thousands of COVID-19 survivors continue to grapple with symptoms many months after they were first infected.
Brain fog, fatigue, even sexual dysfunction are among the symptoms people endure weeks and months after their acute COVID symptoms fade.
On some occasions, the virus reveals a pre-existing disease or causes another to inflict the patient.
But there is still much unknown about so-called long COVID, which ongoing research at Duke University and elsewhere aims to clarify.
Two Duke pulmonologists spoke Wednesday with the media about symptoms, treatments and what remains unknown about long COVID.
On what constitutes long COVID
Dr. Coral Giovacchini (a pulmonologist and critical care specialist with Duke Health and an assistant professor of medicine):
“Groups have created different definitions and so what we initially mean now, when we talk about long COVID is symptoms that last beyond the four weeks of what we would consider the acute illness.”
“… And the NIH is defining this still currently as anything after four weeks, and this is an evolving definition for us.”
“Long COVID itself can include a host of different symptoms after the acute infection, it’s usually an extension of what you have sometimes from your acute infection, but can also include other new things.
The most common things that we see are persistent fatigue and persistent shortness of breath symptoms, it can also include a bunch of different things like palpitations, things that we’ve heard referred to as brain fog, memory issues, ongoing insomnia problems, neuropathic problems and a host of different things.”
On what is known about the prevalence of long COVID
Dr. Loretta Que (a pulmonologist with Duke Health and a professor of medicine):
“When you look at the literature and when you look at what we see here at Duke, the literature quotes anywhere from 10 to 50% of patients can have long COVID or developed long-COVID symptoms. I think, on average, it’s about 30% that’s quoted.”
“Over here Duke we’re seeing numbers that are similar to that, if you look at that also is somewhat dependent on the symptom that you’re describing post-COVID because if you look at brain fog, even up to 80% of patients are quoting brain fog after COVID, so it is, it is a burden on patients and it’s a problem that they’re trying to deal with and that we’re trying to help them with.”
Difficulty confirming symptoms are long COVID and not a different illness
Dr. Loretta Que:
“What I’m seeing with COVID is something similar to what I see with other chronic illnesses, so if you look at diseases like Lyme disease, for example, a lot of these patients can develop prolonged fatigue, fibromyalgia—that’s muscle aches and pains—difficulty concentrating, difficulty breathing. So all of those symptoms that I see with chronic diseases I’m also seeing with COVID and long COVID.”
“How do you tell the difference? It’s hard to know. We assess the patient when they come in. Our clinic at Duke primarily focuses on the lung effects of COVID.
And so, if someone comes in and they’re complaining about shortness of breath or chest discomfort … post-COVID then we see them.
And we often find that if they had some form of lung disease prior to COVID, then whatever symptoms they had before COVID have been amplified after COVID.”
“I think what we’re seeing is a combination of the acute effects of COVID and then the amplification of disease after they’ve had COVID.”
“COVID can unmask disease, (it) can be something predating or can be something that’s been unmasked or something new.”
Dr. Coral Giovacchini:
“Another part of the definition that’s evolving right is that we want to make sure that there’s not something else going on, and so it’s really important for patients to present if you have these symptoms rather than just saying, “Oh, I have ongoing long COVID or post-viral syndrome.'”
“Because, and you know, even though it feels like it through this pandemic time, not everything is COVID and you really want to make sure that what we’re treating and what we’re seeing is not something else that’s maybe being masked by what you might think is COVID.”
Are there any risk factors that can predict long COVID?
Dr. Coral Giovacchini:
“That’s another interesting question, another part of the literature that is sort of evolving as we follow this along. I think what people think of as historical risk factors for severe disease, so things like age, underlying comorbidity, … high blood pressure and diabetes are not actually the things that pan out in terms of risk factors for COVID … or for long COVID for some people.”
“That’s been quite a surprise, when they develop symptoms later or have ongoing persistent symptoms and the most consistent thing that’s been panned out so far in some of the cohort studies, in the literature, is the number of symptoms that someone presents with.”
“So if somebody has more than five different types of symptoms that they’re presenting with, with their acute COVID infection, that may predispose (them) to ongoing long COVID and symptoms. They don’t necessarily need to be the same symptoms, but that probably is something that predisposes, regardless of the initial severity of your disease.”
“So even patients who are managed as outpatient or have mild disease but have a host of symptoms when they present, may be more likely to get long COVID symptoms in the future.”
“It’s certainly not something that means that you will develop long COVID if you have that many symptoms, it’s just that that’s something that we’re seeing as a potential risk factor.”
“I think the other surprising thing for some patients and people following this is that again, it does not relate to the severity of your disease, so these patients can have had mild disease, or maybe a short hospitalization and still end up with long COVID symptoms. They’re also tending to be younger patients than we think of as those who might get severe disease.”
“Patients who are showing up with long COVID symptoms tend to be on the younger end of that spectrum. So maybe in the 40 to 55 range and even younger patients we’ve seen this pan out.”
The likelihood breakthrough infections lead to long COVID
Dr. Loretta Que:
“Well, we still are seeing long COVID post-vaccination. The numbers are way lower so (there’s a) marked reduction in these numbers of patients that are presenting and … seem to be different than what we see with those who have not been vaccinated. So the severity of their post COVID seems to be reduced.”
“… When I look at their lung findings on a CT scan or chest X-ray or lung-function studies, they are not as affected as those who have not been vaccinated.”
How effective are antiviral medications in limiting long COVID?
Dr. Coral Giovacchini:
“I think that’s the hope for a lot of folks, but it is certainly too soon to know if it’s going to have a difference in terms of long COVID symptoms. I think … the goal of antivirals is to reduce the severity of disease and reduce the symptom burden, but again, long COVID can happen in patients who may or may not have had severe disease, and so it’s an area that will be interesting to see how that unfolds in the future as more patients get treated with antivirals that are coming out.”
Are long COVID symptoms as severe as in the acute COVID phase?
Dr. Coral Giovacchini:
“I think, for a lot of patients, because for some patients fatigue that goes on for months can be extremely debilitating and maybe more ‘severe’ for them in terms of their daily functioning, than perhaps their initial respiratory symptoms were up front.”
“And so I think it just it depends on the type of symptom that the patient is dealing with. … For a lot of patients, that can be very severe in terms of their ongoing daily life ability to function, particularly some of the brain fog and mental effects.”
How does long COVID affect children—vaccinated and unvaccinated?
Dr. Loretta Que:
“Long COVID in children is an issue and we still don’t know the long-term impact of that.”
Dr. Coral Giovacchini:
“There are data that are now coming out of countries who had higher (cases of COVID) before we did, and so we have a little bit longer-term data.”
“Countries like Italy and Israel and the UK … have shown that long COVID in kids is evolving and is becoming an issue for them, with rates of about 40% of kids still having ongoing symptom effects at an average of 162 days. So in that five and a half, six months follow-up range most of their symptoms can be things like fatigue, like adults have, but are also turning into some of the cognitive effects like memory attention disorders in kids and some anxiety.”
“Now, there has been a lot of question of this in the literature as whether or not these mental effects are coven related or pandemic related, which is going to be a whole other thing to figure out, especially in the children population.”
“But it is certainly something to follow in kids because what we’ve historically been talking about again is that this is mild disease in kids so even the children who are … outpatients can have ongoing effects and it’s something that parents and pediatricians need to be watching out for in the future, as we follow these kids along.”
Will diagnosing long COVID become easier over time?
Dr. Loretta Que:
“A lot of what we do in medicine is trying to unravel these puzzles. I think that’s a great question, because we have a lot of ongoing research that’s been done to help us … better identify these patients and the NIH is devoting research dollars to the development of new research platforms to help us in this endeavor. Right now, it’s a broad constellation of symptoms.
I suspect it’s going to continue being a broad constellation of symptoms, just like when anybody presents with viral-like illness and we have to do an evaluation, but it might be that in the future, we might have a more targeted approach to doing so. That’s our hope.”
Are there long COVID symptoms that surprised you?
Dr. Loretta Que:
“I’ve seen patients with sexual dysfunction with long COVID. It’s not a strange abnormality, but it’s odd for me because I’m a lung doctor and they presented with sexual dysfunction and pain.”
Dr. Coral Giovacchini:
“Yeah, … I have seen the same, and I think that can be shocking for some patients. I would go back to the ongoing taste abnormalities for patients. I think a lot of patients feel like that is a very strange manifestation, even if they didn’t have loss of smell or taste.
Some of their favorite foods can just be almost intolerable to them going forward and it’s a challenging thing we don’t have a treatment for. And so it can also cause a lot of weight-loss problems in patients or weight gain, depending on their taste alterations.”
What should people do if they suspect they have long COVID?
Dr. Loretta Que:
“There are multiple studies that (are) looking at long COVID and not just within the pulmonary division and so, if you go to the Duke Hospital website, you can look at some of the different trials that are ongoing and see which one you might qualify for.”
If you care about long COVID, please read studies about how Long COVID could harm your immune system, and findings of why some people get ‘long COVID’ while others don’t.
For more information about COVID, please see recent studies about why people with blood Type O less likely to get COVID-19, and results showing that scientists find a new drug that could prevent COVID-19.
Written by Steve Hartsoe.