First-of-Its-Kind Program Explores Most Common Long COVID Symptoms

For up to 30% of the people who contracted COVID-19, full recovery isn't immediate. A new study—one of the first to specifically track long COVID patients—shows that these people continue to experience symptoms like mood disorders, fatigue and lethargy, and cognitive impairments like brain fog for months.

The study is based on data from the first 100 patients who participated in the COVID-19 Activity Rehabilitation Program (CARP) at the Mayo Clinic in Rochester, Minnesota. CARP is a multidisciplinary program that evaluates and treats patients who have post COVID-19 syndrome. The syndrome is often referred to as long-haul COVID or long COVID.

The patients were evaluated between June 1 and December 31, 2020, an average of 93 days after their original COVID-19 infections.  

Eighty percent of participants said they experienced unusual fatigue, while 59% had respiratory problems, and about the same percentage said they had neurological or cognitive issues.

Other symptoms included:

• Mood disorders
• Sleep disturbance
• Mental health symptoms

About one-third of the patients said they had difficulty performing basic activities of daily living. Only one in three patients had gone back to their usual level of work activity.

Most had no underlying health conditions before their infection, according to lead study author Greg Vanichkachorn, MD, MPH, medical director of CARP. And many were not even severely ill when they contracted COVID-19. “In fact, only 25% of the patients that we have seen at our clinic were hospitalized as part of the acute infection," he tells Verywell. "They had very mild illness and were able to manage their symptoms on their own or were just treated by their primary care provider at home.”

For most patients, results from laboratory and imaging studies were normal or did not lead to a specific diagnosis, despite the presence of debilitating symptoms. The May study was published in the journal Mayo Clinic Proceedings.

A Widespread Problem

Long COVID continues to be a widespread problem. Based on a review of the records and surveys done at the Mayo Clinic, Vanichkachorn estimates that anywhere between 10% and 15% of patients who have COVID-19 infection will come down with a prolonged condition. Other reports say the
incidence is as high as 30%, he says.

Determining how many people have long-haul COVID may be difficult because many are just living with the problem, he says. “There's still a lot of people out there I think who are suffering," he adds.

Because of the size of the pandemic and the number of people who contracted the infection, there will be thousands of people who will need care for long-term COVID. Diana Berrent, founder of Survivor Corps, an organization offering support to COVID-19 long-haulers, tells Verywell it's a “massive scale problem."

Wide Range of Symptoms

The CARP study is part of ongoing research at the Mayo Clinic on long COVID and the symptoms that are associated with it.

“Right now, we don't have a diagnostic understanding of what's going on,” Vanichkachorn says. “The symptoms of post-COVID syndrome are so nebulous and there are so many things that go into what a person experiences as part of it–pre-existing health, coping mechanisms, socioeconomic status, and things like that."

Berrent agrees. “The heterogeneity of this is confounding, and it's part of the problem. How do you quantify something that presents in such myriad ways?” she asks. “Long-term COVID is a constellation of symptoms of which each person has their own particular subset, and no two cases are going to be exactly the same.”

Many patients with long-haul COVID develop dysfunctions of the autonomous nervous system, called dysautonomia, Vanichkachorn says. This can affect the functioning of the heart and circulation, the nervous system, and the gastrointestinal system.  He adds that there are many similarities between long-haul COVID and chronic fatigue syndrome or fibromyalgia.

Catching Long COVID Early

The Mayo Clinic’s long-term COVID program is exceptional because it enrolls patients as soon as they are diagnosed with the virus, Berrent says. “There's nowhere else that's done that," she says. "They're able to capture the longitudinal data on each patient from there on out, which is extraordinary.”

CARP combines staff from different medical fields. It provides physical and occupational therapy and brain rehabilitation, as well as mental health support for patients. The program was done in both face-to-face and virtual settings.

Recovery from long-haul COVID appears to be better when patients are treated as soon as possible. “We have seen some people recover early on—four to five months after their infection,” he says. “Our population is just an observation, but those people tended to get care earlier for their condition versus later.” He adds that patients can experience setbacks if they try to do too much too soon as they are recovering.

Vanichkachorn says that the primary care system in the United States will have to gear up to treat patients with long COVID. “A lot of things that we can do for treatment can be done by the primary care force.”

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.