Some patients have symptoms that last and last, even if they weren’t very sick

(SACRAMENTO) — If you survive COVID-19, you may have something else to fear, and it has nothing to do with how sick you were.

For some people — and there seems to be no consistent reason — symptoms can last and last, sometimes for months. The name many of these patients call themselves is “long-haulers,” but it does not begin to describe the confusion, anxiety and distress that long-term COVID-19 patients endure.

“It’s scary for them,” said Nicholas Kenyon, a UC Davis Health professor and leading pulmonary and critical care expert. “They want to know, ‘Why am I still out of breath? Why am I still tired and coughing after months? Am I ever going to get better?’”

The answer for them is not clear, and certainly not simple. That’s because even defining the problem is not simple.

There are no precise statistics on the number of long-haul patients — people who, in theory, have recovered from the worst impacts of the coronavirus, tested negative, but still have symptoms that can last for weeks or months. The Journal of the American Medical Association in a recent article, as well as a study from a team of British scientists, estimate about 10% of COVID-19 patients become long-haulers. That’s in line with what UC Davis Health is seeing, Kenyon said.

But it’s hard to quantify because it’s hard to define the length of time that lingering symptoms fit the long-haul COVID category.

“Even after a month, it gets frightening,” Kenyon said. “People ask, ‘What’s wrong with me?’”

No limits to who long-haul COVID affects

Long-term COVID-19 appears to affect every kind of patient — from people who were hospitalized with severe COVID-19 to those with very mild bouts who recovered at home. It appears in regions with both high rates and low rates of COVID-19 infections. It attacks people who were battling other conditions before contracting COVID-19 and people who were completely healthy. And it hits both the old and the young.

“We’ve seen this in patients across the gamut, and there does not appear to be any clear connections in the cause,” Kenyon said. “What’s new is this is affecting some people who are quite young who were very healthy and never had other illnesses.”

It is not uncommon, Kenyon said, for patients who were hospitalized for a long time — whatever the reason — to take months to get back to feeling normal. But even those COVID-19 patients are inconsistent. Most recover on a steady, if sometimes slow, upward line, but some have symptoms that persist for months.

“We have experience helping people who were hospitalized with other severe viral infections, but this disease is so new, there is still much to learn,” he said. “We don’t know why a few hospitalized patients continue to have symptoms and others don’t. We aren’t even exactly clear what all the symptoms are.”

Common symptoms of long-haul COVID-19

The list of symptoms is long, wide and inconsistent. For some people, they are nothing like the original symptoms they had when they first were infected by COVID-19. The most common include:

• Coughing
• Ongoing, sometimes debilitating, fatigue
• Body aches
• Joint pain
• Shortness of breath
• Loss of taste and smell — even if this did not occur during the height of their illness
• Difficulty sleeping
• Headaches
• Brain fog

That last one is among the most confounding. Patients report being unusually forgetful, confused or unable to concentrate even enough to watch TV.

“That sort of brain fog can happen to people who were in an intensive care unit for a length of time, but it is relatively rare,” Kenyon said. “But this is happening to all sorts of patients, including people who had mild cases and were not hospitalized.”

Symptoms for long-haulers are not uniform. Some report severe chest pain along with more general body aches. Others have chills and sweats or gastrointestinal issues. Some people have reported feeling better for days or even weeks then relapsing.

For others, it’s a case of just not feeling like themselves.

“There are patients who can go for a run and test completely normal,” Kenyon said. “But they still don’t feel right. They aren’t back to their old selves, but we can’t fully define what’s wrong. Telling a patient who feels bad that they are fine and there is nothing we can identify is not a decent answer for them, or for us.”

Trying to explain long-haul COVID-19

The problem for patients and experts trying to help is the same one that physicians and infectious disease experts face with COVID-19 in general — it’s so new that science is only beginning to grasp it. And long-haulers have only recently gotten the attention of some experts who were first engaged with trying to slow the pandemic or care for dangerously ill patients.

The vast majority of long-haulers test negative for COVID-19 and there is no specific test to give them for lasting symptoms of the coronavirus, said Nam Tran, an associate clinical professor of pathology and laboratory medicine and senior director of clinical pathology in charge of COVID-19 testing at UC Davis Health.

“Unfortunately, we don’t know enough about the virus to test for its lingering effects,” Tran said. “There are questions about why their fatigue goes on and on, and science just hasn’t solved them yet. We’re all learning in real time.”

The most common theories about long-term COVID-19 patients include the hypotheses that the virus remains in their bodies in some small form, or that their immune systems continue to overreact even though the infection has passed.

“The idea that the virus is somehow persisting has been discussed,” Kenyon said. “This doesn’t mean the virus is growing or that we can test for it, but this might mean their bodies are reacting to it or it’s still triggering ongoing inflammation.”

Some infectious disease experts, including Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, have speculated that long-term COVID-19 might be a form of what is called chronic fatigue syndrome, or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Unfortunately for long-haulers, ME/CFS is not well understood, either.

What is being done to help COVID-19 long-haulers?

As with many other COVID-19 issues, it’s hard just knowing how long some of the symptoms might last when the disease was identified barely 10 months ago. Learning how to treat these patients also requires time.

“First, we have to discover what we can about the disease and how to treat it,” Kenyon said. “That takes time and experience. Then we all have to share the information with other physicians and the public. We don’t have that system of sharing in place yet for long-haulers.”

Early in the pandemic, pulmonary care chiefs around the U.S. gathered virtually on Sunday evenings to talk about caring for patients and to share information to help each other progress. Kenyon said he’d like to see something like that resume to discuss caring for long-term COVID-19 patients.

“It may not seem to be as much of an emergency as in the first days of the pandemic, but this is just as important,” he said. “Because of the pandemic, we don’t have some of our usual routes of communication, like in-person meetings and conferences.”

Also, because the disease is so new, much of the information about long-haul COVID-19 cases and care is anecdotal. That is changing, however, and UC Davis Health is working to bring its expertise together to help patients.

“These people need our help,” Kenyon said. “We don’t want anyone to have to go step-by-step through each symptom or to go through a list of referrals to find out what’s happening to them. We are uniquely set up to care for these patients, and we will.”