Although most people recover from COVID-19, the disease is causing devastating side effects that can last weeks or months after illness. Post-COVID, also known as long COVID or long-haul COVID, is defined as experiencing lingering side effects three months following COVID-19 infection. It can range in symptoms and severity, and it can be quite distressing and debilitating.
Many questions remain about the disease and those who continue to suffer from it. Experts around the world and at University of Utah Health are working to understand the associated health effects, who suffers from them, and why, as well as whether long COVID can be prevented and if there are any treatments for those who are suffering.
Jeanette Brown, MD, PhD, a pulmonologist and director of U of U Health’s COVID-19 Long-Hauler Clinic, answers questions about long COVID based on patient data.
What type of patients are being seen?
Patients that were both hospitalized and patients that were not. The majority of patients seeking help were not hospitalized for COVID-19.
Long COVID is really affecting people who are younger. Patients range from ages 18 and older, but the average age group is between 20 to 50 years old. More women are seen than men as well.
What are some of the most common symptoms?
Some of the most common issues are:
- Brain fog, difficulty thinking, word finding
- Loss of taste and smell (which has come back for most patients and has been more common among patients who were infected earlier in the pandemic)
- Ringing in the ears
- Hair loss (which typically improves, and hair will grow back to normal)
- Postural orthostatic tachycardic syndrome or POTS
Some uncommon symptoms include:
- Nerve pain, similar to complex regional pain syndrome (CRPS) or Guillain-Barré syndrome (GBS)
- Severe weakness, like paralysis, but symptoms are not persistent
Some of these symptoms are very frustrating for patients and disruptive to their daily life. Some patients can’t work because of their symptoms are so debilitating.
How long are symptoms lasting?
It's variable. Some long-haul patients that were infected in the beginning of the pandemic still have persisting symptoms. Other patients have symptoms that have increased and decreased over time.
Is long COVID more common among certain virus variants?
That’s not known yet. Some long-hauler patients that were infected by early variants are now getting Omicron, and we don't know whether that will affect them. So far, anecdotally, some patients have reported that their symptoms are really different or worse with Omicron.
More patients are also being seen at the clinic. Initially, the clinic was focused on helping patients by navigating them through the health care system and providing them with long-term care. Now, we are seeing patients with repeat infections due to the Omicron variant. Because of that, the clinic is now working on increasing access for follow-up appointments.
Are there any common underlying medical conditions among long hauler patients?
Patients with asthma and chronic morbidities are more common. These patients tend to get more severely ill and require hospitalization during COVID-19 infection. But there have also been many patients with no prior medical history.
Are long COVID patients recovering?
One thing that's been really striking about caring for long COVID patients is the variety of symptoms. One patient may have concerns about abnormal smell and taste that have persisted since the beginning of the pandemic, while another patient may be experiencing blood pressure issues and nerve pain. Then the next patient may have continued headaches.
Some of these patients are getting better over the course of weeks to months, but some patients have symptoms that continue to persist. We're still waiting on more data to come out that gives us a better understanding of this question.
What about children and long COVID?
There is not much data on pediatric long COVID. It's typically reported as a lower percentage of children that end up with long-haul symptoms, but there are some children that experience long COVID.
What should people do if they have long COVID symptoms and aren’t believed?
Doctors have to take into account that other conditions exist. For example, one patient complained of fatigue and was found to have gastrointestinal bleeding and severe anemia. So, it's important for us to remember other things exist, but it's also important to be adaptive and sensitive to what patients are experiencing. The key is finding a health care team that supports and listens to you.