CDC's new guidance for treating COVID-19 long-haulers warns against relying on labs, imaging results alone

A male primary care doctor and his patient sit across from each other talking. Both are wearing masks
New Centers for Disease Control and Prevention guidance outlines the "broad spectrum" of symptoms COVID-19 long-haulers face after acute infection and advocates for patient-centered care approaches targeting quality of life and function. (Getty/Geber86)

The Centers for Disease Control and Prevention (CDC) released new interim guidance late Monday for healthcare providers treating patients with post-COVID conditions—an umbrella term the agency is using to capture a wide range of physical and mental health issues that sometimes persist four or more weeks after an individual’s COVID-19 infection.

Sometimes referred to as “long COVID,” the conditions can present among COVID-19 patients regardless of whether they were symptomatic during their acute infection, the agency wrote in the guidance.

Post-COVID condition patients have demonstrated a “broad spectrum” of symptoms that may affect several different body systems, the CDC wrote. These include heart palpitations, cognitive impairment, insomnia, diarrhea and post-exertional malaise, a worsening of symptoms following physical or mental exertion, according to the guidance.

The agency wrote that, based on current information, many patients’ post-COVID conditions can be managed by primary care providers. Treatment should include patient-centered approaches that can optimize their quality of life and function, the CDC wrote.

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“Healthcare professionals and patients are encouraged to set achievable goals through shared decision-making and to approach treatment by focusing on specific symptoms (e.g., headache) or conditions (e.g., dysautonomia); a comprehensive management plan focusing on improving physical, mental and social wellbeing may be helpful for some patients,” the agency wrote.

Notably, the CDC warned against relying on diagnostic results as the sole means of assessing a patient’s condition, as a “lack of laboratory or imaging abnormalities does not invalidate the existence, severity or importance of a patient’s symptoms or conditions.”

Individuals with post-COVID conditions should also continue to practice established COVID-19 prevention measures, such as wearing masks and avoiding crowds, the agency wrote. COVID-19 vaccines are still recommended regardless of infection history, with the CDC noting that it is looking at ongoing research to determine whether vaccination may improve post-COVID condition symptoms.

The CDC said its guidance is likely to be updated as more information on post-COVID conditions is available. As such, the agency said it “will continue to work in collaboration with federal, state, local, academic, and community partners to better understand the long-term effects of SARS-CoV-2 infection.”

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The interim guidance was lauded by the American Academy of Physical Medicine and Rehabilitation (AAPM&R), which said it played “a significant role” in helping the agency develop the guidance.

"Long COVID or Post-Acute Sequelae of SARS-CoV-2 infection is affecting millions of Americans,” Steven Flanagan, M.D., vice president of AAPM&R and a professor at New York University Langone Health, said in a statement. “This new guidance for frontline providers will greatly improve the speed and quality of healthcare's response to people suffering from Long COVID. It will help them regain quality of life and become active members of our community once again."

Study: 23% of COVID cases experience prolonged conditions

The release of the CDC’s interim guidance was followed the next day by the release of a large-scale analysis indicating that more than 23% of patients who had COVID-19 experienced one or more post-COVID conditions 30 days after their initial diagnosis.

Conducted by independent healthcare cost and insurance nonprofit FAIR Health, the study reviewed a private healthcare claims database to identify nearly 2 million COVID-19 patients for analysis.

Post-COVID conditions were more common among patients who were symptomatic or had severe cases but still were not rare among those who were asymptomatic. Half of those who were hospitalized for COVID-19 developed post-COVID conditions, the nonprofit wrote, whereas 19% of asymptomatic cases went on to develop a post-COVID condition.

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Pain, breathing difficulties, hyperlipidemia, malaise and fatigue and hypertension were the five most common post-COVID conditions among the patients, in descending order. Most, but not all, of the post-COVID conditions measured by the organization were more common among females than males.

The long-term risks of COVID-19 also included a higher risk of mortality following acute treatment, the group found.

Half of one percent of patients who were hospitalized for their COVID-19 infection and discharged died 30 days or more after their initial diagnosis. Compared to those who were not hospitalized, hospitalized and discharged patients were 46 times more likely to die 30 days or more after the initial diagnosis.

“This analysis of the largest population of COVID-19 patients so far studied for post-COVID conditions makes several notable findings … [that] are significant for all individuals who have long-haul COVID, as well as for providers, payors and policy makers,” FAIR Health wrote in the white paper study.