By Sara McCloskey

A recently released study is helping to determine the most common symptoms of a major clinical and public health concern.

The World Health Organization and the Centers for Disease Control and Prevention define long COVID as any signs, symptoms or conditions that continue or develop after a COVID-19 infection. The symptoms include a wide range of ongoing health problems that can last weeks, months or even years.

In late May, the first analysis was released of an adult patient group that is part of the Researching COVID to Enhance Recovery (RECOVER) initiative, funded by the National Institutes of Health (NIH), which aims to better understand, treat and prevent long COVID symptoms.

The RECOVER initiative includes several research topics with different colleges, universities and hospital systems participating from across the country. A team of researchers and clinicians at the VCU School of Nursing is leading one of the research groups focused on understanding the long-term health effects of COVID-19 in infants, children, adolescents and young adults.

“It is clear to public health experts that COVID-19 will not be the last pandemic to affect this generation,” said Patricia Kinser, Ph.D., endowed professor and assistant dean for research at School of Nursing and co-leader at the regional RECOVER site. “Unfortunately, due to many factors, we will continue to see large-scale infectious diseases affect our population. Hence, we need to learn lessons now that can be applied in the future to ensure the health and wellness of all.”

What is long COVID?

Early on during the COVID-19 pandemic, people who were previously healthy and contracted the virus began to report new symptoms and were not fully recovering from the infection. Some of these symptoms lingered for four weeks after getting sick, while others relapsed over time. For some people, being sick with long COVID has impacted their quality of life, how much money they’re making and healthcare costs.

Long COVID is known by several names, including postacute sequelae of SARS-CoV-2 infection (PASC), long-haul COVID and post-COVID conditions (PCC).

“We are just scratching the surface of our knowledge regarding long COVID ... Here we are three years after the first identified COVID cases, and we are just starting to develop operational definitions of long COVID,” said Jeremy Turlington, M.D., a cardiologist and intensive care physician at the VCU Health Pauley Heart Center with expertise on the impacts of COVID-19 on the heart. "Once we have a working definition, we can start to look for changes in the body caused by the virus and then work on treatment.”

Many things are still unknown about this condition. Federal health organizations and partners are working to better understand why some patients experience long COVID — and others don’t — and whether some groups disproportionately impacted by COVID-19 are at a higher risk developing long COVID symptoms.

Defining the most common symptoms of long COVID

There were 12 symptoms identified in the recent RECOVER initiative study, which researchers say can be used as a basis to define and diagnose long COVID in patients as well as a starting point for more studies.

These symptoms, in order of prominence among those surveyed, include smell / taste loss, postexertional malaise (worsening symptoms with exercise), chronic cough, brain fog, thirst, heart palpitations, chest pain, fatigue, lack of desire for intimacy, dizziness, gastrointestinal (GI) problems, abnormal movements and hair loss.

In clinical practices, Turlington says up until now diagnosing long COVID has been difficult because patients can have so many different symptoms. While the time frame when symptoms appear is not exact, Turlington has seen patients improve over time.

“As multiple organ systems appear to be affected by COVID/long COVID, it makes it hard for one sub-specialist to make a diagnosis and not miss something if they are focused on their specific organ system,” Turlington said. “When I see patients with long COVID symptoms, I try to make it very clear we are still learning about this disease process and our understanding today may change in the future. It is also important to acknowledge that their symptoms are real, as many patients feel like it is “all in their head” when tests are negative or inconclusive.”

RECOVER researchers also saw a difference in the symptoms identified by patients who got sick earlier in the pandemic compared to later. For example, those who had COVID-19 before the Omicron variant became the dominant strain of the virus in November 2021 experienced more severe long COVID symptoms. This means the first strains of COVID-19 may have different long-term effects on patients than the newer variants.

VCU-led research to better understand long-term effects of COVID-19

This new emerging illness is being researched nationally as well as by VCU and VCU Health team members to better understand symptoms, prevention and treatment options for a variety of patient populations.

As part of the RECOVER initiative, the VCU School of Nursing is still enrolling families in the region to better understand how and why the virus is impacting some children and young adults long after the original infection.

“By following young people over the next few years and evaluating their emotional health, physical health, and learning abilities, we hope to be able to uncover targets for treatment options,” Kinser said. “The findings from this study will also be helpful for understanding how other viruses cause long-term effects and how we might help those individuals as well.”

Families who are involved in RECOVER are compensated for their time and are provided copies of all the children's test results, such as heart function, lung function, learning/ cognitive testing, so they can share with their personal providers. All young people with prolonged symptoms are welcome to participate in RECOVER, whether or not they know their symptoms are due to a COVID infection.

Other researchers from the VCU School of Medicine are trying to understand the impacts COVID-19 has had on smell and taste. In the early stages of the pandemic, smell loss was considered a cardinal symptom of COVID-19 infection, but by analyzing a national COVID-19 database, the VCU research team found that this is now rarely the case for the most recent variants. The team reported this June that the prevalence of smell loss was decreasing, but the new data shows an even larger decline since last year.

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