Treating patients with long COVID

The stress brought on by the COVID-19 pandemic has taken a toll on almost everyone, but particularly on those who have battled COVID-19 and now have lingering symptoms, known as long COVID. About 10% of patients develop long COVID ( JAMA opens in new window, Vol. 225, No. 19, 2021; The BMJ opens in new window, Vol. 370, No. 8258, 2020). In one recent study in Wuhan, China, researchers found that 6 months after acute infection and hospitalization for COVID-19, 63% of patients reported fatigue or muscle weakness, 26% reported sleep difficulties, and 23% reported anxiety or depression ( The Lancetopens in new window , Vol. 397, No. 10270, 2021). Others who were never hospitalized for COVID-19 also experience long-term symptoms, some even more severe than the initial illness itself ( Nature opens in new window, online first publication, 2021; Morbidity and Mortality Weekly Report opens in new window, Vol. 70, No. 18, 2021).

With 32 million cases and countingopens in new window of COVID-19 in the United States alone, that means 3.2 million Americans may be facing long-term illnesses that could reshape their relationships, jobs, and futures and take a significant toll on their mental health. And the number of COVID patients with mental health issues may end up being even higher than that: A May 2021 study found that a third of COVID-19 patients had been diagnosed with neurological or psychological symptoms, including anxiety, depression, post-traumatic stress disorder (PTSD), and psychosis, in the 6 months after they contracted COVID-19 ( The Lancet Psychiatry opens in new window, Vol. 8, No. 5, 2021).

Rehabilitation and health psychologists have been treating a steady stream of these patients since COVID began sweeping the country early last year. Some patients are entering care after transitioning from the hospital; others are seeking help for physical and psychological symptoms that appeared after their initial mild or moderate symptoms subsided. Despite the great need, only a handful of long COVID or post–intensive care unit clinics exist across the country, most in cities with large academic centers—and some of those clinics have 3- to 4-month waiting listsopens in new window. But psychologists in those settings and in private practices are working to gain a foothold on how best to treat this population and share best practices with colleagues. In addition, the long-term understanding of long COVID received a major boost in February, when the National Institutes of Health announced a 4-year, 1ドル.15 billion initiativeopens in new window to study the condition, including funding for studying the ways the virus and its long-term symptoms interact with neurological and mental health.

As researchers unravel those links, it’s important to recognize that many long COVID patients may be facing a recovery with no clear end in sight, said Abigail S. Hardin, PhD, an assistant professor of psychiatry and behavioral sciences at Rush University Medical Center in Chicago who works with long COVID patients in the hospital and it’s outpatient rehabilitation clinic.

"There is no magic treatment, there is no surgery, there is no pill that we can give that will instantaneously alleviate all these symptoms," Hardin said. But early intervention—from offering practical advice on how to counter brain fog to helping patients navigate relationship changes and overcome feelings of inadequacy over not being able to work—can make a difference in helping patients fare better. "Having that psychological understanding right from the beginning can help people find a path toward healing," she said. In addition, psychologists already have on hand several treatments that can aid many of the psychological symptoms of COVID, including trauma therapy, cognitive behavior therapy for establishing new behaviors like sleep hygiene, and acceptance and commitment therapy for those struggling with the uncertainties of their illness.

Collaboration and patient trust

For any treatment path to be effective, psychologists and physicians must work together to support long COVID patients, according to Hardin and other clinicians who have been working with these patients. Ideally, patients should continue to see physicians and medical specialists to rule out or address underlying physiological issues, and work with physical, occupational, and even sometimes speech therapists to regain some of their previous abilities. At the same time, they should work with psychologists, particularly as they attempt to find a new normal in their relationships, sleep, diets, and livelihoods.

"If we only focus on recovery from the virus, and not recovery from a holistic, whole-person perspective, people’s recovery is going to be incomplete," said Megan Hosey, PhD, an assistant professor of rehabilitation psychology and neuropsychology in the Johns Hopkins Department of Physical Medicine and Rehabilitation. In Hopkins’s intensive care unit (ICU) and hospital, she sees patients who are experiencing long COVID symptoms—like brain fog, fatigue, breathlessness, sleep disturbance, anxiety, and depression—and struggling to find doctors and support networks to understand what they are going through. They frequently need help with feelings of isolation, worries over lost jobs and income, and adjusting to their new lives. She also works closely with her physician colleagues to coordinate patients’ care, like helping them overcome anxiety about medical procedures and making sure there are no underlying physiological reasons for their neurological issues.

The experiences of long COVID patients appear similar to those with other chronic illnesses, such as chronic fatigue syndrome or dysautonomia (dysfunction of the autonomic nervous system). To guide treatment, rehabilitation psychologists have drawn on research on treating patients with those chronic illnesses. They are also applying research findings on post–intensive care syndrome, which includes symptoms such as impaired cognition and delirium that are caused by contextual factors like sedating medications and prolonged immobility. Early research shows that COVID-19 appears to make this condition worse, Hosey said, particularly for those with longer hospital stays who weren’t able to see their families during the worst parts of their illness ( Nature Reviews Disease Primers opens in new window, Vol. 6, 2020; Critical Care Medicine opens in new window, online first publication, 2021).

Memory issues can also be a significant area of concern for these patients, both physiologically and contextually. For example, some patients have been intubated or sedated for weeks or months, and psychologists can help them manage the resulting stretches of blank space in their memories, said Caitlin LaGrotte, PsyD, MEd, a clinical health psychologist at Cooper University Health Care and an assistant professor of medicine at Cooper Medical School of Rowan University in New Jersey who has been working with COVID patients and their families in intensive care since the pandemic began.

"It’s helping them deal with that loss of time, and how their body and mind are both recovering from what they’ve just been through," she said.

In fact, according to emerging research, some of the mental health symptoms that patients are experiencing may be due to the experience of being sick rather than from the virus itself, said Susan Borja, PhD, a program chief in the Traumatic Stress Research Program at the National Institute of Mental Health who is helping coordinate the COVID-19 mental health research that the institute supports.

Compared with patients with a range of other medical events, like kidney stones or influenza, COVID-19 patients have higher rates of mental illness, Borja said. "But it’s important to look at why and what else is going on," she said. COVID patients are diagnosed with mental health conditions at similar rates as other trauma survivors, with whom they may share some experiences—such as losing loved ones, homes, and jobs. "For many, if not most, COVID patients with new or worsening mental illness, it looks like there may be broader psychological implications of the COVID experience, rather than the virus itself," she added.

When patients are ready, they can ask family members to fill in memory gaps with what they know, and they can also ask their medical teams for details on their charts. ICU diaries, compiled by members of the medical team, can also be immensely helpful in moving beyond an account of diagnoses to what was happening in a patient’s life during this lost time, Hosey said.

When it comes to lingering, day-to-day memory issues, psychologists can ask patients, "How can you set up your environment to help you? Can you ask for social support? Can you do task lists or reminders in your phone for appointments?" said Maija Broox Bruzas, PhD, a licensed health psychologist who sees long COVID patients in her private practice in Colorado. Particularly for those with memory issues, having practical plans like these "empowers them to feel more like they’re able to manage everything life throws at them," she said.

On top of the symptoms patients are experiencing, many long COVID patients report dismissive attitudes by medical providers, which can make seeking care—whether psychological or physical—even more challenging. About half of Hardin’s patients, for example, said they’ve visited physicians who dismissed their ongoing concerns about their condition or lingering symptoms.

"They are getting the message, intentionally or unintentionally, that this is all in their head," she said. "Meanwhile, they are having real symptoms and real suffering that is very much affecting their lives."

This denial by some in the medical system has resulted in many people avoiding care. "They would rather suffer in silence than risk what they perceive to be the scorn and rejection of the medical establishment," said psychologist James C. Jackson, PsyD, director of behavioral health at Vanderbilt University Medical Center’s ICU Recovery Center. "That’s a concern because to the extent that they don’t pursue it, it often gets worse." Likewise, many have friends and family who are unfamiliar with the emerging science about long COVID and express doubt or surprise at how severe and persistent the symptoms are.

With these factors in mind, it is critical for physicians and psychologists to acknowledge and validate patients’ symptoms and not make them prove they are suffering. "The most important take-home is: Believe the patient," Hosey said.

Robust mental health support

Patients with long COVID frequently rank cognitive function and mental health at the top of their concerns, Jackson said, which is why seeking psychological support can be so vital. "The language that we as psychologists speak, and the capacity we have, is hitting COVID survivors exactly where they live."

Fortunately, many of the same psychological frameworks that help other patients showing cognitive decline, anxiety, depression, and trauma appear to work well with long COVID patients, Jackson said.

"There are empirically validated treatments that have been shown to be effective in the treatment of people with PTSD, anxiety, cognitive impairment," Jackson said. While new approaches to treating long COVID patients may emerge, he said, many existing psychological and behavioral tools—acceptance and commitment therapy, cognitive behavioral therapy (CBT), group therapy and peer support, for example—seem to be effective treatments for different aspects of long COVID.

When talking with patients who have long COVID, it’s important to start by asking about their most prominent concerns, said Hosey. Which parts of their illness most affect their lives? If they report high levels of anxiety, for instance, but an even higher level of worry about their relationships, psychologists should prioritize addressing those relationship concerns.

Hosey also asks patients these overarching questions: "What are you hoping to get back to?" and "If you weren’t sick, what would you do today?" Answering them can help patients identify specific goals and start piecing together what a meaningful life could look like in the face of an uncertain future.

"I can’t promise somebody that they will live without some kind of fatigue or some kind of vulnerability to some of these symptoms," Hosey said. "But I can promise, if we adapt and we put some of these things in place, you’re able to live a life that’s full and meaningful."

Therapy can also help alleviate some of the physical symptoms of long COVID, which has a bidirectional association with physical and mental health, Hardin said. "The mind-body relationship actually can drive some of these symptoms," she said, because mood can alter pain perception. Hardin compares this relationship to stubbing your toe on the best day of your life versus the worst day—the experience can feel much different. It is important for patients to know that their symptoms are not "all in their head," she added, and that they can try to alleviate them by making changes to their mood, behavior, and more.

For patients experiencing issues like brain fog or memory loss, it can help to explain how mental health and cognition are deeply intertwined, said Renee Madathil, PhD, an inpatient rehabilitation neuropsychologist at the University of Rochester Medical Center. "Our brains don’t operate in compartments; they operate in systems. When one part of the system is compromised, other parts are likely to run less efficiently, too."

Patients with severe cognitive issues, such as difficulty accessing important memories or lack of executive functioning, are probably best served by a specialized health psychologist or neuropsychologist, Madathil and others say. But there is plenty that all psychologists can do for patients reporting less acute symptoms: teaching anxiety management strategies; how to cope with irritability, frustration, and sadness; what behaviors patients can engage in to improve their emotional states; and how they can think positively but realistically about their situation.

Patients struggling with insomnia may benefit from CBT, while those reporting brain fog may need to work with cognitive rehabilitation therapists and discover compensatory strategies, Madathil added. Clients with fatigue may need help mapping out plans for how many tasks they can complete that day, and what they can ask their families to take on.

Therapists may also need to help clients come to terms with not being able to work as much as they did before, or at all, and the accompanying plunge in self-worth and independence that can follow. Patients may need help battling feelings of hopelessness, thoughts of self-harm and suicide, and the fear that COVID could affect the rest of their lives. Psychologists can help them manage anxiety about what their symptoms may look like in the future by teaching them to focus on the present, said Bruzas. Mindfulness therapy can be one avenue for patients to increase awareness and acceptance of their experiences and change their mental and emotional reactions to physical symptoms, and it can help control panic over symptoms like breathlessness, she added. "We can’t control what the future holds," said Bruzas. "All we can control is your behaviors and thought patterns in the present."

For those experiencing symptoms of trauma, Bruzas recommends using a trauma-informed approach such as cognitive processing therapy, which can help patients change their perspectives on traumatic events. PTSD can occur among anyone who battled the virus or watched a loved one do so, but it is particularly frequent among those who were hospitalized, especially in the ICU ( The Cognitive Behaviour Therapist opens in new window, Vol. 13, 2020).

Patients who were sedated or experienced delirium after a stay in the ICU may also have memories and nightmares that still haunt them. "When we work with COVID survivors, especially those who were in the ICU, it’s clear that a trauma-based explanatory framework—a trauma-based paradigm—is really appropriate," Jackson said. "This is really traumatizing, and these patients show the same avoidance that you see in combat veterans."

Jackson also strongly recommends group therapy and support groups for many patients experiencing long COVID symptoms, as well as their families and caregivers. At Vanderbilt’s ICU Recovery Center, these groups meet once a week. The clinic will soon launch a cognitive skills group for long COVID patients to improve their cognitive abilities, develop compensatory strategies, and learn how best to advocate for themselves and their care.

Jackson has found that members of these groups help pull one another forward. "If you ask many of them, they will say that support groups literally changed their lives, gave them their lives back," he said. There are also practical benefits to one psychologist helping many people at once, which will be particularly important as hundreds of thousands of patients may begin seeking care, he said. "Clearly, the mental health demand of COVID patients is going to vastly outstrip any supply that we have."

While clinical psychologists can already provide plenty of help, it’s important to consult with neuropsychologists or health psychologists to prepare for any medical or health-related issues that arise. Clinical psychologists without much experience treating severe cognitive issues should also be ready to refer cases to specialists, said Jackson: "Know the limits of your capability." Likewise, physicians should consult with psychologists when necessary, he said.

For example, if a patient experiences brain swelling, it’s important to bring in psychologists who can monitor and address any mental health symptoms that emerge. So far, research indicates that COVID-related encephalopathy may lead to other neuropsychiatric outcomes, including psychosis, Borja said.

The pandemic has highlighted what those in psychology have known all along about chronic and serious illness, Madathil said. "To get back to living, you need a whole team of people," she said.

Increasing family and caregiver support

It’s not just long COVID patients who suffer from the fallout of the virus and its lingering symptoms. Psychologists working with long COVID patients also find that it can be difficult for patients to relate to their friends, colleagues, and even some family members. Patients and caregivers alike can grow tired of retelling or hearing the same stories or answering questions about symptoms. To address such issues, psychologists can help patients and their families create and enforce boundaries. At the same time, loneliness can also play a huge role in patients’ experiences, and they often need to learn how to use their social support in new ways. Patients may be struggling to reconnect with their families or friends during and after the trauma of their illness. Many of these patients have experienced stigma over testing positive or may have missed funerals while they were isolated or hospitalized. They could also be struggling with survivor’s guilt or guilt from infecting other people.

An illness like long COVID can also intensify existing issues within families. "If there were anxiety disorders or avoidant patterns at work in a family before, those are now avoidant patterns on steroids," Jackson said. "There’s no longer mild anxiety; it’s now profound anxiety."

Psychologists can also help loved ones protect their relationships in the family and keep caregiving from consuming their roles as spouses, children, parents, and siblings. "When I work with family members, we talk a lot about caregiver burnout, as well as how the caregivers need to take care of themselves in order to be there for their loved ones in the long term," said Anastasia Bullock, PsyD, a clinical health psychologist at Cooper University Health Care and an assistant professor of medicine at Cooper Medical School of Rowan University who has worked extensively with long COVID patients in the hospital.

Overall, the pandemic has shined a light on how little support patients and families often receive during medical crises, Hardin added.

"In the United States, we do not have good programs and policies that support families of someone who has been very ill, and that has been problematic for decades," Hardin said. She hopes one silver lining of COVID will be increased awareness of the need not just to treat the specific medical ailments of a patient but to treat the whole body and offer long-term support to individuals and their families during and after a health crisis. "As a society, we spend freely on saving lives in the emergency room and the ICU, but the money dries up when the patients need it most, after they’ve survived," she added. "If there is a moral imperative to save lives, there is also a moral imperative to provide the treatments that make those lives full again."

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