UF: Long COVID continues to plague victims

The symptoms of COVID-19 can be terrible enough in the days and weeks after infection by the coronavirus. Many people, however, soon discover the microscopic invader won’t allow them to return to their normal lives even months after infection. It’s an especially insidious side of the coronavirus that makes vaccination all the more important — COVID-19 as a chronic illness.

It’s known as long-haul COVID-19, or long COVID. It can cause nagging and potentially dangerous symptoms, like intense fatigue and a racing heart, to name just a few.

Dr. Kartik Cherabuddi, a UF Health associate professor and epidemiologist in the College of Medicine’s division of infectious diseases and global medicine, discusses the plight of people suffering from long COVID and how vaccination remains the best hope for avoiding these debilitating symptoms.

Question: What is long COVID?

Answer: People who’ve been infected by the coronavirus or had COVID-19 sometimes develop longer-term, often serious and debilitating symptoms that are commonly called “long COVID.” We’ve seen patients with long COVID symptoms six to 14 months after infection, with symptoms often relapsing. It’s a condition that affects multiple systems of the body, including the lungs, heart, and brain, among others.

The most commonly described symptom is severe fatigue — a feeling of utter exhaustion, energy drain or bodily dysfunction that is not necessarily triggered by exertion and is not always relieved by rest. The next most common symptoms are “brain fog” and memory issues. In addition, we’ve seen heart rates that fluctuate between very high and normal with even minimal activity or postural changes and that don’t respond well to medication. Also, mental health issues sometimes occur. Additionally, breathlessness, having a cough “that you can’t get rid of,” muscle aches and intermittent headaches can be seen. But overall, the most common symptoms we’re seeing are fatigue, brain fog and heart rate changes.

It doesn’t appear to matter how severe a form of COVID-19 people experience. Whether they got a mild, severe or even critical case of COVID-19, all can be susceptible to long COVID. A high number of people around the world are impacted by long COVID. For example, almost a million people in the United Kingdom have self-reported long COVID as of June.

Q: What is the impact of these symptoms on the lives of patients?

A: Long COVID symptoms can be quite severe and disabling, preventing people from their regular, normal activities at work or at home and significantly impairing their daily life. Even milder symptoms can prevent long COVID patients from returning to a normal state and the relapsing nature of the illness makes it unpredictable. People are having to take prolonged sick leave or even having to quit their jobs. Students aren’t able to go to school. Rehabilitation and recovery can be prolonged.

Q: Do we know why long COVID impacts some patients?

A: We don’t know for sure, but there are a few areas of research that people are working on. One possibility is that symptoms are the result of direct damage to the lungs, nerves and other organs caused by the immune system’s response to the coronavirus, especially among those with a more severe form of COVID-19. Often, patients develop microclots in blood vessels that can lead to these changes. The immune system protects us from viruses. But in COVID-19, if infection is not controlled early, the immune response itself can go into overdrive and harm patients.

Researchers are examining other possibilities. Some of the antibodies produced as a result of infection in patients might be attacking the body. Or perhaps long COVID is a post-viral syndrome that we also see with other viruses, such as Epstein-Barr or even influenza, that result from a prolonged period of immune dysregulation and prolonged recovery. It might be that some people are unable to completely clear the virus from their body. We could, of course, be looking at a combination of all these potential mechanisms.

Q: Are young, healthy people susceptible to long COVID?

A: Yes, they are. Hospitalizations with the delta variant across the country are occurring in folks 10 to 15 years younger on average than what we saw in our previous surge. A large number of people are getting infected, and many with mild illness are developing long COVID. Greater numbers of young people are becoming sick than in previous surges. And it is inevitable some of them will develop long COVID. Recent data reveal that long COVID is less common in people who are already vaccinated. It’s especially troubling to see these disabling symptoms in a younger, otherwise healthy person who might have been able to run a half-marathon but now can no longer walk around the block.

Q: What is the treatment for long COVID?

A: Unfortunately, we do not have highly effective treatments. We educate patients on their own self-care and self-management of symptoms. Physicians work to control symptoms. It’s also important to get different medical specialties involved given the wide array of organs impacted. Those might include primary care, rehabilitation, pulmonary medicine, neurology, cardiology and mental health services, to name a few. At UF Health, the UF Health Interstitial Lung Disease Clinic, physical medicine and rehabilitation, and others provide care to many of these patients.

We’ve also seen that vaccinating long COVID patients who are unvaccinated can sometimes improve symptoms. We think it could be that this addresses residual coronavirus in patients or that it allows the immune system to reset.

While the long COVID journey can be tough and sometimes prolonged, many people do recover and, in some cases, completely so. People living with long COVID need our trust, empathy, advocacy and long-term support.

Q: How important does vaccination against COVID-19 remain given how difficult it can be for patients to recover from what can be a long, lingering illness?

A: It remains crucial to get vaccinated. A COVID-19 vaccine is highly effective in protecting you from the coronavirus, and it is especially effective in preventing severe disease, hospitalization and ICU admission. The overwhelming majority of hospitalized patients are unvaccinated. Almost all patients who die of COVID-19 are unvaccinated. Nobody wants to be disabled six months after they’ve been infected. We have a solution — extremely safe and effective vaccines that minimize the chance of becoming seriously ill and decrease your chance of getting long COVID to begin with. The shots of prevention are the smart choice and avoid unnecessary chances with this deadly and disabling virus.

COVID-19 long-haulers have formed various support groups, including the “COVID-19 Long Haulers Discussion Group” on Facebook.