Long Covid affects about 6-7% of adult Americans and 1% of children, a total of nearly 20 million people. It is a chronic, multi-system disease associated with 200 symptoms that is seen in every demographic. And it is not well understood, despite many ongoing research efforts in the U.S. and globally. Long Covid can happen after a severe or mild infection with SARS-CoV-2 infection, and some patients may not have known they were infected.
For patients, just getting a long Covid diagnosis can be complicated and frustrating. It can involve visits with multiple providers, some of whom may seem skeptical that long Covid even exists. And with no definitive diagnostic test and no standard treatments, providers know that caring for long Covid patients can be a major challenge.
Educating and engaging providers
To improve the care experience for patients by educating and engaging their providers, a multidisciplinary team of University at Buffalo researchers is launching the online WNY Long Covid Resource Center, supported by funding from the Mother Cabrini Foundation.
The resource center is a collection of modules researchers from throughout the university have developed titled “Long COVID: A Team-Based Approach to Support Recovery.” Researchers who contributed are from UB’s Jacobs School of Medicine and Biomedical Sciences, School of Public Health and Health Professions, and School of Social Work.
Module topics range from defining long Covid and its symptoms, to its epidemiology, to how it can disable patients and how social work, physical and occupational therapy and mental health management can contribute to an effective treatment plan.
Western New York providers who complete all the modules receive Continuing Medical Education (CME) or Continuing Education Unit (CEU) credit.
Site evolved from UB’s Long COVID Recovery Center
The resource center was developed by a multidisciplinary team of UB researchers, who treated patients at UB’s Long Covid Recovery Center, which was in operation for 18 months from 2023 to 2024.
“There is no standard of care for long Covid,” says Jennifer S. Abeles, DO, clinical assistant professor in the Jacobs School and a physician with UBMD Internal Medicine.
Abeles and Sanjay Sethi, MD, SUNY Distinguished Professor and chief of the Division of Pulmonary, Critical Care and Sleep Medicine in the Jacobs School and UBMD Internal Medicine, co-directed the Long Covid Recovery Center. The center provided holistic, individualized clinical care to directly support patients experiencing the wide range of symptoms associated with long Covid.
It was that experience that motivated Abeles and Sethi to assemble a team in order to share what they had learned about long Covid with other providers.
“We do know that what we did for patients in the Long Covid Recovery Center did help them,” Abeles says, “and that’s what we want to share. We want to spread the word and give that knowledge to others so patients can be evaluated by their primary care providers and get the diagnosis and treatment they deserve.”
Affirming that long Covid is real is a critical message, they say. “There has been skepticism on the part of some providers, so we want to address that,” says Sethi. “We’ve had patients tell us, ‘My doctor won’t even listen to me.’ People need to believe in the problem. Long Covid is real and we need to deal with it with the tools we do have.”
What patients want providers to know
The site features interviews with two long Covid patients who share their stories to help providers better understand how the condition impacts individuals.
They share that just getting diagnosed has been a challenge in itself and that the search for providers and the need to keep repeating their symptoms and their long COVID history can be fatiguing and traumatizing.
They describe a range of symptoms including intense fatigue, severe headaches, tremors, hoarse voice and temporary loss of voice. They mention cognitive impacts such as overstimulation, fatigue that caused them to drop out of the workforce, and dysautonomia, or dysfunction of the autonomic nervous system, which governs involuntary processes, such as heart rate, blood pressure and digestion.
Probably the most critical thing they say patients need from providers is affirmation that long COVID is real.
One of the patients who was treated at UB’s Long Covid Recovery Center said it made a tremendous difference to hear a provider affirm that long COVID exists and that while there is no medication yet to treat it, they were committed to working with him to provide care and improve how he felt.
“Long Covid is not life-threatening, but it’s life-altering and that’s tough enough, he adds. “I just want people to know that long Covid is real and it sucks.”
In addition to Abeles and Sethi, members of the multidisciplinary team include, from the School of Public Health and Health Professions: Renee Cadzow, PhD, assistant professor in the Division of Health Services Policy and Practice in the Department of Epidemiology and Environmental Health; Jacob McPherson, PhD, clinical assistant professor, Sue Ann Sisto, PhD, professor and chair and director of the Biomechanics Lab, and Janice Tona, PhD, Occupational Therapy Program director and clinical associate professor, all in the Department of Rehabilitation Science; and Jean Wactawski-Wende, PhD, dean and SUNY Distinguished Professor.
Laura Lewis, PhD, clinical associate professor and assistant dean for global partnerships in the School of Social Work, is also a member of the team.