The World Health Organization (WHO) released an official definition of the condition known as long COVID in October, but UF Health has been operating a clinic focused on COVID long-haul treatment since July.
According to the WHO definition, long COVID “occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.”
“Compared to other centers in the country, it’s young.” Estores said. “My peers in San Antonio and L.A. have had theirs for one and a half years.”
The clinic, known as UF Health’s COVID Restore, is embedded within the Integrative Medicine clinic instead of being a stand-alone clinic, Estores said.
“This is one of the things that I was mulling over when we launched this,” she said. “Gainesville’s experience with COVID and long COVID is very different from Miami or Broward [counties]. We did not have as big of a hit as they did. If the volume merits a full-fledged long-haul COVID clinic, then we will probably go that route.”
The Centers for Disease Control and Prevention (CDC) website explains that COVID long-haulers have a protracted battle with the disease: “People with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.”
Examples of the most common symptoms of long COVID include: fatigue, difficulty concentrating or thinking, shortness of breath, headache, cough, dizziness upon standing, heart palpitations, loss of smell or taste, depression or anxiety and joint or muscle pain.
As of July 2021, long COVID may be considered a disability under the Americans with Disabilities Act (ADA), according to the U.S. Department of Health and Human Services.
Since Estores specializes in rehabilitation medicine, she said when creating the UF Health COVID Restore clinic she asked herself, “How can my skills and expertise contribute to reducing the suffering of people with this disease?” She said she started talking to other rehabilitation specialists and concluded she could contribute.
Estores’ advice for people with long COVID is to have their primary care physician refer them to the long haul clinic at UF. She said she is working with the primary care physicians at UF Health “so that we can get patients earlier, than later.”
Estores said there are treatment protocols in place for post COVID care centers that come from best practices in centers in the U.S., the U.K. and in Canada.
“The clinic that I run here is modeled after those,” she said. “This has already become the standard of care. UF is now turning its attention to long COVID.”
Once a patient is referred to the clinic, a physician will do an assessment.
Estores said each patient with long COVID is treated as a unique case and receives a tailored treatment plan.
“They’re all different,” she said of patient symptoms and challenges.
Estores said she would like to find out how to reach more of the underserved and marginalized populations in the Gainesville area as a majority of long COVID patients seen in the clinic are white.
“I see very few non-whites and that makes me wonder,” Estores said. “Is this something that isn’t accessible to marginalized and underserved communities? I think if we look at the data, that would be true.”
Estores said that the name of the clinic is an acronym for the treatment it delivers to long COVID patients: UF Health COVID “Restore” stands for Rehabilitation, Support, Training, Outreach and Research.
“Those are the things we want to do as part of this initiative,” Estores said.
Based on an assessment at the clinic, Estores said the patient is referred to “physical therapy, to pulmonary, to cardiology. It really depends on what they present with.”
Estores said other long COVID clinics often have a designated team of physicians treating a patient.
“We do not have that now,” she said. “We do not know how many people there are with long COVID out there.”
Estores said she sees a variety of patients in the adult clinic with some being young and athletic, highly functional professionals, while others are older people with underlying conditions.
She hopes to create a registry to document how many cases of long COVID exist in the Gainesville area. Researchers report that one in four COVID survivors will have long COVID.
Alachua County has had 39,810 COVID-19 cases since the start of the pandemic, which equates to about 10,000 possible long COVID cases.
Estores co-authored the study “Models of Care for Postacute COVID-19 Clinics Experiences and a Practical Framework for Outpatient Physiatry Settings,” which was published in the December 2021 American Journal of Physical Medicine & Rehabilitation. In the study researchers documented established long COVID clinics at UT Southwestern, UT Health San Antonio and VA Greater Los Angeles Healthcare System. They also reviewed developing models of long COVID clinics at Hennepin Healthcare in Minneapolis and the University of Florida.
“It has become clear that the next surge of the COVID-19 pandemic consists of patients experiencing functional declines from PASC [postacute sequelae of SARS-CoV-2 infection],” the study concludes.
The researchers also concluded that long COVID clinics need to be “multidisciplinary and patient centered” and “include the use of symptom inventories and assessment tools, testing that is tailored to the patient’s symptoms, and education of all clinicians in a system.”