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Long-term COVID-19 recovery, aka COVID “long-hauler” syndrome, continues to challenge both clinicians 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, and multicenter studies, experts shared what is known and what evidence remains elusive in a February 12 media briefing sponsored by the Infectious Diseases Society of America.
To be considered post-COVID-19 syndrome, symptoms should persist for at least 4 weeks after acute SARS-CoV-2 infection. Many patients, however, experience symptoms lasting 2 to 6 months or longer.
Fatigue appears to be most common, followed by dyspnea and other pulmonary complications, Allison Navis, MD, assistant professor in the Division of Neuro-Infectious Diseases at the Icahn School of Medicine at Mount Sinai in New York City, said during the briefing.
Neurologic symptoms, particularly “brain fog” and numbness or tingling throughout the body, as well as mental health challenges including post-traumatic stress disorder (PTSD), also have been reported anecdotally, she said.
Symptoms of post-COVID-19 syndrome can be similar to those experienced during acute infection.
Symptomatic Infection Precedes Most Cases
People who experienced asymptomatic SARS-CoV-2 infection rarely appear to progress to persistent post-COVID syndrome, said Kathleen Bell, MD, Kimberly Clark Distinguished Chair in Mobility Research at UT Southwestern Medical Center in Dallas.
However, “we are certainly seeing people who were not hospitalized who were acutely ill and managed it at home” present with post-COVID syndrome, said Bell, who is also professor and chair of the Department of Physical Medicine and Rehabilitation at UT Southwestern.
Navis agreed that in her experience most people with long-term effects either managed acute infection at home or were hospitalized. “There were maybe one or two people who probably had asymptomatic infection and came in with a mild long-COVID syndrome,” she said.
Hazards Linked to Hospitalization
For some patients, being hospitalized for COVID-19 in and of itself can lead to long-term recovery issues. For example, inpatients who spend a high proportion of time in a prone position could be more likely to experience peripheral neuropathy, Bell said. The associated arm and leg weakness can be particularly important in people with diabetes.
Furthermore, a long-term hospital stay 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,” Bell said. These adverse effects are not unique to COVID-19 but are also reported in other people who spend weeks or months in critical care, she added.
Some people with mild mental health concerns might have been compensating well before their experience with COVID-19, but the stress of acute infection and hospitalization exacerbates their condition, Bell explained.
A local outbreak can also increase risk for mental health issues. The spike of cases in March and April 2020, for example, “was a very scary time here in New York City,” Navis said.
“Some people were isolated in their apartments, hearing the sounds of ambulances and sirens, and were concerned about their own health and survival,” she said, adding that it also triggered anxiety, depression, or PTSD for some.
Consensus and Guidelines in the Works
The World Health Organization issued updated treatment guidance for COVID-19, including for people with persistent symptoms, on January 26.
The Centers for Disease Control and Prevention is working on guidelines for diagnosis and management of people with post-COVID syndrome, “which is very exciting,” Bell said. The recommendations are expected to emerge from an event about 3 or 4 weeks ago in which the agency brought experts together to share their models of care.
The National Institutes of Health is also interested in developing protocols, Navis said.
Many specialized teams and clinics have emerged to address the growing population of COVID-19 “long-haulers.”
Interestingly, although many centers initially drafted their own protocols for treating this patient population, “we are starting to look alike,” Bell said.
The COVID-19 recovery clinics at Bell’s 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.
It’s unknown what proportion of people with COVID-19 will progress to post-COVID syndrome. “The expectation would be that it’s likely that most people will get better over weeks to months, and approximately 10% to 15% will have longer-standing problems,” Bell said. Larger studies should help clarify the figures.
Although it’s generally accepted that more men than women develop COVID-19 and die, it remains to be seen if the risk for long-term effects differs among men and women. Navis reported a fairly equal distribution of cases by gender in her experience.
How vaccination might prevent or mitigate post-COVID syndrome also remains an open question. The vaccines “are so new, that would be a crystal-ball question,” Bell said.
Bell predicted it will take about 6 months for answers to these and other unknowns about post-COVID syndrome to emerge from larger, prospective studies.
Damian McNamara is a staff journalist based in Miami. He covers a wide range of medical specialties, including infectious diseases, gastroenterology, and critical care. Follow Damian on Twitter: @MedReporter.