Comprehensive Care for Long COVID: The UCLA Health Approach

The UCLA Health Long COVID Program offers a multidisciplinary approach to address the complex and lingering symptoms of post-COVID syndrome, also known as long COVID. Established in July 2021, the program brings together experts from various fields to provide comprehensive and personalized care to patients experiencing long-term effects of COVID-19.

Understanding Long COVID

Many people who get infected with COVID-19 continue to have symptoms for months or years afterward, even after the infection has cleared and viral tests come back negative. These lingering symptoms can include shortness of breath, coughing, headaches, brain fog, chest pain and others. This condition varies depending on the patient, but collectively these symptoms are known as “post-COVID syndrome” or “long COVID." Long COVID affects approximately 1 in 9 individuals who have had a COVID-19 infection. The Centers for Disease Control and Prevention (CDC) define Long COVID as a group of symptoms that linger for months after a COVID-19 infection. Long COVID symptoms can affect multiple organs and body systems simultaneously.

The Need for a Standard Definition

The variety of symptoms and the lack of a standardized definition for Long COVID pose challenges for researchers and physicians. Dr. Joann Elmore, professor in the Department of Health Policy Management at UCLA Fielding and of medicine at the David Geffen School of Medicine at UCLA, notes that differing definitions may lead to misdiagnosis and difficulty in comparing research results. “Without a clinically usable and standardized research definition of Long COVID, it’s like every study is using a different measuring stick,” Elmore said. “That makes it hard to compare results, develop treatments, or track progress. Without a shared definition, we risk mislabeling patients and misguiding care."

Dr. Lauren Wisk, an assistant professor of medicine in the division of general internal medicine and health services research at the Geffen School, emphasizes the need for a standard definition to ensure accurate identification of those with the condition. “If every study on Long COVID uses a different definition for identifying who has it, the scientific conclusions become harder to compare across studies and may lead to delays in our understanding of it,” Wisk said.

The UCLA Long COVID Program: A Multidisciplinary Approach

The UCLA Long COVID Program emerged from a conference in December 2020, where health care professionals shared their observations of patients with long COVID symptoms. Dr. Nisha Viswanathan, a primary care physician and assistant professor in the David Geffen School of Medicine at UCLA, noted the consensus from that conference: “The conclusion was, you need a strong multidisciplinary team to tackle this,” Dr. Viswanathan said. “It really shouldn’t just fall on a primary care doctor or one subspecialist to deal with this.”

The team includes program director Dr. Viswanathan; neurologist Elyse Singer, MD; pulmonologist Kristin Schwab, MD; cardiologist Jeff Hsu, MD; psychiatrist Helen Lavretsky, MD; infectious diseases specialist Oladunni Adeyiga, MD; and three more primary care physicians: Lara Kose, MD, William Pittman, MD and Daniel Puneky, MD.

Eligibility and Initial Assessment

To qualify for the program, a patient must be experiencing symptoms at least 12 weeks after recovering from the initial viral infection. After being referred to the program, patients first meet with one of the primary care providers for an assessment. At that initial visit, doctor and patient work together to identify the patient’s goals and priorities and select the appropriate subspecialist to best address the most disruptive symptoms.

“We do a comprehensive evaluation of their symptoms - rarely is it tidily just pulmonology, or just neurology,” explained Dr. Viswanathan. “At the end of my first meeting, I ask patients which symptoms are the ones they really want to focus on to help get their quality of life back.”

Diagnostic and Treatment Specialties

Long COVID symptoms can overlap with other health conditions. Our internal medicine specialists use the latest testing to identify the root cause of symptoms and confirm a Long COVID diagnosis. Because Long COVID affects multiple body systems, our team includes leading experts in:

Cardiology
Internal medicine
Infectious disease
Neurology
Psychiatry
Pulmonology
Rheumatology

Searching for Answers: Understanding the Causes

The causes of long COVID are still not well understood and may vary from patient to patient. The virus itself may have caused organ damage that lingers after the infection is gone. Another possibility is that the immune system gets overactivated fighting off the infection, and begins attacking the person’s own body, a condition called autoimmunity.

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Dr. Singer said that improvements in imaging and other detection technology are revealing new information about how viral infections affect the brain and nervous system. “We’re finding virus in people who were sick, but we’re also finding autoimmunity,” she said. “Their bodies are pushing back against the virus, and that’s probably why they made it through the disease. But that inflammatory response may not turn itself off once you don’t need it anymore. And that in and of itself may cause some of the neurologic problems that we see.”

Addressing Neurological and Psychological Aftereffects

The stress of being ill can worsen depression and anxiety to a critical degree. “Sometimes, it’s a continuation of uncontrolled psychiatric symptoms,” said Dr. Viswanathan. “We found that sometimes we work on that and they get so much better, and we haven’t done anything other than antidepressants and therapy.”

When patients are deprived of oxygen, as can happen with COVID, that can also damage the brain and lead to cognitive problems, Dr. Singer points out. Another problem is that some patients may have developed very tiny clots in their blood vessels, which affected the brain. Other times, a patient may have had a high fever with delirium and hallucinations, which can lead to neurologic or psychological aftereffects.

Innovative Treatment Approaches

Considering the patient’s full constellation of symptoms helps the team provide the best possible treatment. For instance, the Long COVID program now has a collaboration with the LA Opera to improve patients’ lung function, which also addresses mental health issues by providing therapy in a joyful and social setting.

Healing Through Song: The LA Opera Collaboration

A UCLA Health/LA Opera program that helps long COVID-19 patients strengthen their lungs through singing and breathing exercises has proven such a hit that it could expand to a wider audience. Since May 2021, 45 UCLA Health patients who are struggling with post-infection symptoms including breathlessness, fatigue and brain fog have logged on to Zoom for free, therapeutic sessions led by LA Opera’s professional singers. They work on building breath capacity and control, practice mindful meditation techniques, and sing lullabies, pop anthems, folk songs and spirituals.

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UCLA Health hopes to conduct formal research on the results, but so far many participants have reported improvement in their stamina and mental health. “As a pulmonologist, the LA Opera program has been for many of my patients the best medicine, and in many ways the best intervention that I’ve been able to use to really help these patients improve,” said Kristin Schwab Jensen, MD, co-director of the Post-ICU Recovery Clinic. “It’s such a good adjunct to the medical and other treatment options we have for long COVID. It’s also teaching a technique that people can take with them for really the rest of their life.”

Ellen Wilson, PT, executive director of therapy services for UCLA Health, is exploring the possibility of expanding the program to other academic medical centers. Wilson said a group of hospital systems could contribute financially to the costs, and their long COVID patients could easily join from anywhere. “I think the Zoom platform has made it really successful because it’s so easy to access,” she said. “Also, it’s fun and low pressure for patients that have been through a really intense situation with their COVID. It’s a happy hour once a week that gives them camaraderie and joy.”

The six-week classes are led by LA Opera teaching artists Michele Patzakis, DMA, and Nandani “Nani” Sinha. Patzakis, a soprano who has studied vocal arts medicine, said the participants are learning the same breathing exercises to aid in their recoveries that opera singers do to perform with their renowned respiratory endurance. “We’re taking it out of the medical realm,” she said. “It normalizes it, which I think is really important, and shows the discipline of it. Opera singers know we don’t just do things a few times and suddenly, miraculously, everything works perfectly. We are very disciplined and we know it’s slow and methodical work over time.”

She said participants not only learn how to take longer, deeper inhalations and improve breathing efficiency, but the exercises decrease anxiety by calming the nervous system. “Anxiety is a big factor in their recovery because they have anxiety around breathing,” Patzakis said. “This program is not just about physical health, it’s also about our mental health. It’s able to address both of those realms.”

Integrative Psychiatry Clinic

Integrative psychiatry is a holistic, patient-focused approach to health and wellness that aims to rebalance mental, emotional, functional, spiritual, social, and community functioning. The clinic optimizes well-being and quality of life by blending conventional Western medicine strategies with integrative medicine approaches to strengthen the natural healing capacities of the individual by promoting mind-body-spirit connections. This is a patient-centered approach using targeted interventions. Treatments are tailored to individual preferences with assessments and recommendations of changes in nutrition, lifestyle choices, and supplement use will be based on the practices recommended by the National Center for Complementary and Integrative Health/National Institute of Health (NCCIH/NIH). Various mind-body therapies are offered as well.

Holistic Support and Ongoing Care

The doctors also recognize the importance of helping the patient emotionally cope with their lengthy recovery. They have created protocols for addressing fatigue, getting back to exercise, treating depression, and they meet regularly to discuss complex care management between subspecialists and primary care physicians. Furthermore, the group collaborates with researchers and other subspecialists to further education about the long COVID condition.

Trends in Long COVID

Long COVID has changed since Dr. Viswanathan and her colleagues started observing and treating the condition more than two years ago. “The symptoms that patients are complaining about have really changed throughout the pandemic,” she says. “It’s really dependent on the variant of COVID that they had.” People infected when the virus first emerged or with early variants were more likely to experience chest pain and shortness of breath, Dr. Viswanathan says, while those infected with omicron variants more frequently report brain fog and fatigue.

As exponentially more people have been exposed to the virus over time, the percentage of those experiencing long COVID symptoms has declined, she adds. Vaccination appears to be protective against long COVID, Dr. Viswanathan adds: “As people are getting vaccinated and then having COVID, it seems that it is helping prevent that progression.”

The Importance of Acknowledgment and Support

For many patients, just hearing a doctor acknowledge that long COVID is real and there are things that can help is powerfully healing, Dr. Viswanathan says. “I can’t tell you the number of patients I’ve seen who’ve cried when I told them, ‘You’re not alone. This is real,’” she says. “We believe you. We’re here for you. And we’re going to work together to figure this out.”

Accessing the UCLA Health Long COVID Program

If you have symptoms lasting longer than 12 weeks after a COVID-19 infection, consult your primary care provider to request a referral to our program.

Eligibility requirements:

A documented, lab-based positive COVID-19 or nucleocapsid test
A valid referral from a physician

Once referred, your case will be reviewed for eligibility. If you qualify, you’ll be scheduled with an internal medicine specialist to confirm a Long COVID diagnosis and coordinate further specialist care.

The Future of Long COVID Care

More study and support are needed to meaningfully address long COVID, Dr. Viswanathan says. The condition disproportionately affects people with lower incomes, who are also the least likely to access treatment. Meanwhile, research into long COVID causes and treatments continues.

Dr. Viswanathan is part of a University of California Board of Regents committee looking into how its institutions can work together to develop a more coordinated approach to long COVID - “especially because no one long COVID program is going to be able to meet the needs of the number of people who need care,” she says.

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