COVID-19 has been around for just a year, so research about the long-term impact of the disease is sparse, but early data indicate that around 10% to 15% of those infected have symptoms for many weeks, even months, after tests show their body is no longer infected with the SARS-CoV-2 virus.

Two medical experts – Kathleen Bell, M.D., University of Texas Southwestern Medical Center professor and chair of the Department of Physical Medicine and Rehabilitation, and Allison Navis, M.D., assistant professor in the Division of Neuro-Infectious Diseases, Icahn School of Medicine at Mount Sinai – shared this data and other information about what is known about COVID “long-haulers” during a Feb. 12 media briefing hosted by the Infectious Diseases Society of America. You can watch a recording of the briefing here.

Among the most common persistent symptoms are fatigue, brain fog, headaches, loss of smell, rashes and gastrointestinal issues. In some people, the disease triggers depression, neurological challenges and diabetes. Both physicians said there is much uncertainty about why some people experience post COVID-19 symptoms for so long.

“We don’t know if [the long-term symptoms] is [caused by] COVID itself or [is caused by a] post-viral syndrome,” said Navis. “We do see [these symptoms] with other viruses and sometimes they last a year and then resolve.”

Of those that develop long-term systems, the majority were not hospitalized for COVID-19, but rather were “mildly” ill – meaning they were sick with symptoms, but not sick enough to need hospitalization, according to Bell.  In addition, most of them had some form of pre-existing condition prior to COVID-19 illness, such as hypertension, she said. However, some patients did not have pre-existing conditions prior to infection, she said.

“We have seen people perfectly healthy have a tough course with COVID,’ Bell said, adding that the medical community is expecting more data about post-COVID-19 symptoms in the next six months.

There are no standard guidelines for treating post COVID-19 illness, but the National Institutes of Health and the Centers for Disease Control and Prevention are working on it, Navis said. Increasingly, medical centers around the country, such as Mt. Sinai and the University of Texas, have created post COVID-19 treatment clinics.

“For most people, the treatment ends up being symptomatic and supportive care,” Navis said of neurological symptoms related to COVID-19.

If you are looking for long-term COVID-19 stories, stay on top of the ‘long-hauler’ story as more data emerges about it in 2021. If you are looking for patients to talk to, check out the Twitter feed of Alison Sbrana. She is an advocate and board member of Body Politic, an online wellness organization that has created a support group for those with post COVID-19 symptoms. The group is spearheading research on the post SARS-CoV-2 illness as well.

Here is some additional reading:

• Long-Term effects of COVID-19 (Centers for Diseases Control and Prevention)
• Trying to make sense of long COVID syndrome (National Institutes of Health)
• Patients, clinicians seek answers to the mystery of ‘Long COVID,’ (Center for Infectious Disease Research and Policy)
• The problem of ‘Long Haul’ COVID (Scientific American)
• Denied treatment, some Covid long-haulers could become lifelong-haulers (Stat)
• Long-Haulers are redefining COVID-19 (The Atlantic)

Bara Vaida (@barav) is AHCJ's core topic leader on infectious diseases. An independent journalist, she has written extensively about health policy and infectious diseases. Her work has appeared in the National Journal, Agence France-Presse, Bloomberg News, McClatchy News Service, MSNBC, NPR, Politico, The Washington Post and other outlets.