A new definition of long COVID

More than 65 million peopleopens in new window around the world are living with long Covid, a condition that spans over 200 symptoms and can disrupt work, school, and daily life for years. New research on the condition, as well as a formal definition from the National Academies of Sciences, Engineering, and Medicine (NASEM), is providing a road map for how health care professionals can help.

While new Covid-19 cases have lessened, “there are still people out there struggling with this as a long-term issue, and psychologists have a tremendous amount to offer them,” said Douglas Whiteside, PhD, ABPP, a clinical neuropsychologist and a professor of rehabilitation medicine at the University of Minnesota Medical School.

Treating long Covid typically requires a team of providers who focus on rehabilitation and symptom relief, because no cure exists for the condition. Psychologists are an important part of those provider teams because they can help address some of the most common and disruptive symptoms of long Covid, including depression and anxiety, sleep problems, fatigue, and pain.

“The most important things to know are what the symptoms are, how to assess for them, and where to direct patients and their families to get further help,” said Christine Koterba, PhD, ABPP, a pediatric neuropsychologist at Nationwide Children’s Hospital in Columbus, Ohio, and a clinical associate professor of pediatrics at The Ohio State University.

Here is how psychologists might encounter long Covid in their work and what they need to know to support their patients.

[Related: Covid-19 information and resources for psychologists, health care workers, and the public]

The 2024 NASEM definition describes long Covid as “an infection-associated chronic condition that occurs after Covid-19 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems” (A long Covid Definition: A Chronic, Systemic Disease State with Profound Consequences, NASEM, 2024opens in new window).

NASEM outlines key points about the condition, including that it can range from mild to severe, affect any of the body’s organ systems, and begin either immediately after an acute Covid-19 infection or following a delay of weeks or months. Long Covid is diagnosed with a clinical assessment, either with or without a past positive Covid-19 test, because it has no known biomarker.

The definition provides explicit examples of common symptoms and requires them to last for at least 3 months before a diagnosis can be made. It also includes a statement on equity, highlighting that long Covid can affect “children and adults, regardless of health, disability, or socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity, or geographic location” to steer practitioners away from stereotypes that could impact diagnosis. Some data indicate that people in socioeconomically deprived settings face a higher risk of the condition.

One hope is that the definition will help shift the view of long Covid to the medical condition it is so that its symptoms are not viewed by providers, insurance companies, and the public as psychosomatic in nature, said Jacqueline Becker, PhD, a clinical neuropsychologist and assistant professor of medicine at the Icahn School of Medicine at Mount Sinai in New York, who is behind the recent effort to enhance long Covid awareness, documentation, and screening among health care professionals.

“Long Covid is not a psychological condition,” Becker said. “It is a medical condition, and it should be treated as such.” Still, many patients report having their complaints dismissed in both medical and psychological clinical settings (Ireson, J., et al., Health Expectations, Vol. 25, No. 4, 2022opens in new window).

[Related: Treating patients with long Covid]

Neuropsychologists work most frequently with long Covid patients, but any psychology clinician may encounter the condition. Symptoms might show up in existing patients, or in new patients who are referred with or without a formal long Covid diagnosis.

All psychologists should be screening for long Covid, Becker said, especially because treating issues such as depression and anxiety will differ in patients with a chronic health condition and can further impact quality of life.

“Determining the onset of symptoms in relation to Covid-19 infection is really important,” she said. “Clinicians very simply need to ask the questions: When did this start? Have you ever had Covid-19, and when did it happen?”

While psychologists will not diagnose long Covid themselves, they can confer directly with a patient’s primary care physician to establish a long Covid diagnosis. It is important that psychologists include relevant International Classification of Diseases (ICD) codes to capture this secondary diagnosis when billing for services.

“For patients, the diagnosis provides an explanation of what’s going on,” said Laura Malone, MD, PhD, director of the Pediatric Post-Covid-19 Rehabilitation Clinic at Kennedy Krieger Institute in Baltimore, Maryland. “It also helps them get connected to specialty clinics that can provide the appropriate services they need.”

Part of the challenge of diagnosing and treating long Covid is its heterogeneity. But mental health issues, primarily depression and anxiety, are some of the most common symptoms. Research shows that supporting patients in managing those challenges is helpful in treating the condition as a whole (The Clinical Neuropsychologist, Vol. 36, No. 4, 2022opens in new window).

Often, patients will report manageable levels of anxiety, depression, or attention problems before they got Covid-19, Malone said. Then in the months following their Covid-19 infection, those problems became overwhelming.

Psychologists can draw on a range of interventions to improve their patients’ well-being, including standard treatments for depression and anxiety, as well as cognitive behavioral therapy for pain, fatigue, or sleep problems.

When addressing mental health concerns, it is important to do so in the context of a chronic health condition, said Koterba, who was one of the reviewers on the NASEM report. Some centers are adapting approaches developed for chronic pain and postconcussion syndrome (The Clinical Neuropsychologist, Vol. 38, No. 4, 2024opens in new window). Part of that approach involves validating patients’ concerns while giving them hope that they can continue to live full lives.

“Instilling optimism is really key: Give patients the expectation that they can and will get better, and we will provide services to help them achieve that outcome,” said Michael Basso, PhD, ABPP, a clinical neuropsychologist and professor of psychiatry and psychology at the Mayo Clinic in Rochester, Minnesota.

For children and teenagers with long Covid, that message is particularly important. Just a few months of symptoms can feel like a massive disruption, Malone said, and youth may struggle to keep their health problems in perspective.

[Related: The reality of pediatric long Covid]

“It’s important that children get a lot of support with schooling, mental health, and physical symptom management. They often feel frustrated because they have symptoms that can affect their daily lives in so many ways,” she said.

Supporting kids involves teaching them strategies to get through the day, including taking breaks at school. Psychologists can also address feelings of anxiety and depression related to uncertainty about the future or missing out on social opportunities.

Tools such as relaxation and mindfulness can also help. At Nationwide Children’s Hospital, Koterba and her colleagues use the Comfort Ability Programopens in new window, initially developed for chronic pain, to train kids and their caregivers on those and other skills.

“If we can’t make your symptoms go away, we’re going to teach you the coping skills and strategies to deal with the symptoms that are making you uncomfortable,” she said.

Another symptom closely associated with long Covid is “brain fog"—cognitive dysfunction such as problems with memory, attention, and executive functioning. So far, researchers have linked the symptom with the condition but have not found a mechanism to describe the problem (JAMA Network Open, Vol. 4, No. 10, 2021opens in new window; Brain, Behavior, and Immunity, Vol. 114, 2023opens in new window).

Cognitive rehabilitation or “brain training” programs, such as those used after a concussion or stroke, appear to help some patients. Becker is currently testing this approach through the National Institutes of Health’s RECOVER-NEUROopens in new window study.

[Related: The cognitive impact of long COVID: What can psychologists do]

But methodological issues with early research on cognitive dysfunction in long Covid suggest the field still has a lot to learn, said Basso, who has reviewed meta-analyses on the link between the condition and cognitive dysfunction. For example, many of the early studies did not properly account for preexisting or comorbid psychiatric conditions. Some studies showed selection bias, only including patients who complained about cognitive problems after they had Covid-19. Others relied purely on subjective complaints, rather than objective measures, and used small sample sizes or flawed research designs.

With that ambiguity in mind, Basso said clinicians should use a variety of measures to test cognitive function in patients with long Covid, rather than relying simply on basic screening tools such as the Montreal Cognitive Assessment (MoCA) and Mini-Mental State Examination (MMSE).

Ongoing research seeks to rectify those methodological problems, as well as to develop screening tools and treatment approaches specifically for long Covid. In the meantime, psychologists can continue to support patients by ensuring the condition is recognized and understood.

“It’s important for psychologists and neuropsychologists to understand that our role in this is significant,” Becker said. “These patients are really suffering, and while we can’t relieve their physical symptoms, we can and should advocate for them.”