Find the latest COVID-19 news and guidance at Medscape’s Coronavirus Resource Center.
Long-term recovery from COVID-19, also known as COVID’s long-hauler syndrome, continues to challenge doctors and patients, with evidence on how best to manage the most common symptoms based primarily on cross-sectional studies and anecdotal reports.
Until a clearer picture emerges from larger, prospective, multicenter studies, experts shared what is known and what evidence remains elusive at a February 12 news conference sponsored by the Infectious Diseases Society of America.
In order to be considered post-COVID-19 syndrome, symptoms must persist for at least 4 weeks after acute SARS-CoV-2 infection. Many patients, however, have symptoms that last 2 to 6 months or more.
Fatigue appears to be more common, followed by dyspnea and other pulmonary complications, said Allison Navis, MD, an assistant professor in the Division of Neuro-Infectious Diseases at Icahn School of Medicine on Mount Sinai in New York City, during the briefing.
Dr. Allison Navis
Neurological symptoms, particularly “brain fog” and numbness or tingling throughout the body, as well as mental health problems, including post-traumatic stress disorder (PTSD), have also been reported anecdotally, she said.
The symptoms of post-COVID-19 syndrome may be similar to those experienced during acute infection.
Symptomatic infection precedes most cases
People who have asymptomatic SARS-CoV-2 infection rarely appear to progress to persistent post-COVID syndrome, said Kathleen Bell, MD, Distinguished President in Mobility Research at Kimberly Clark at UT Southwestern Medical Center in Dallas.
Dr. Kathleen Bell
However, “we are certainly seeing people who have not been hospitalized who were acutely ill and have managed to deal with it at home” with post-COVID syndrome, said Bell, who is also a professor and head of UT Southwestern’s Department of Physical Medicine and Rehabilitation.
Navis agreed that, in his experience, most people with long-term effects managed the acute infection at home or were hospitalized. “There were maybe one or two people who probably had asymptomatic infection and came with a mild long-term COVID syndrome,” she said.
Risks related to hospitalization
For some patients, being hospitalized for COVID-19 alone can lead to long-term recovery problems. For example, inpatients who spend a great deal of time in a prone position may be more likely to develop peripheral neuropathy, Bell said. The associated weakness in the arms and legs can be particularly important in people with diabetes.
In addition, long-term hospitalization can trigger adverse mental health outcomes. “We have people in the hospital for 3 months, and in a large percentage we are seeing mental health symptoms, including PTSD, anxiety and depression,” said Bell. These adverse effects are not unique to COVID-19, but are also reported in others who spend weeks or months in intensive care, she added.
Some people with mild mental health problems may have compensated well before their experience with COVID-19, but the stress of acute infection and hospitalization exacerbates their condition, explained Bell.
A local outbreak can also increase the risk of mental health problems. The peak cases in March and April 2020, for example, “were a very scary time here in New York City,” said Navis.
“Some people were isolated in their apartments, listening to the sounds of ambulances and sirens, and were concerned about their own health and survival,” she said, adding that it also triggers anxiety, depression or PTSD for some.
Consensus and guidelines in the works
The World Health Organization published updated treatment guidelines for COVID-19, including for people with persistent symptoms, on January 26.
The Centers for Disease Control and Prevention are working on guidelines for diagnosing and treating people with post-COVID syndrome, “which is very exciting,” said Bell. The recommendations should come from an event about 3 or 4 weeks ago, in which the agency brought together experts to share its service models.
The National Institutes of Health is also interested in developing protocols, said Navis.
Many teams and specialist clinics have emerged to serve the growing population of COVID-19 long-haulers.
Interestingly, while many centers initially developed their own protocols to treat this patient population, “we are beginning to look like ourselves,” said Bell.
The COVID-19 recovery clinics at the Bell and Navis institutions focus on multidisciplinary collaboration, including general medical care and specialists such as pulmonologists, cardiologists and psychiatrists, as well as rehabilitation specialists, to address specific symptoms.
Remaining Issues
It is not known what proportion of people with COVID-19 will progress to post-COVID syndrome. “The expectation is that most people are likely to improve over weeks to months, and approximately 10% to 15% will have long-standing problems,” said Bell. Larger studies should help to clarify the numbers.
While it is generally accepted that more men than women develop COVID-19 and die, it remains to be seen whether the risk of long-term effects differs between men and women. Navis reported a fairly equal distribution of cases by gender in his experience.
How vaccination can prevent or mitigate post-COVID syndrome also remains an open question. The vaccines “are so new that it would be a crystal ball issue,” said Bell.
Bell predicted that it will take about 6 months for responses to these and other unknowns about post-COVID syndrome to emerge from larger prospective studies.
Damian McNamara is a team journalist who lives in Miami. It covers a wide range of medical specialties, including infectious diseases, gastroenterology and intensive care. Follow Damian on Twitter: @MedReporter.
For more news, follow Medscape on Facebook, Twitter, Instagram and YouTube.