For the millions of people in the United States with long COVID, getting help comes down to where they live. Long COVID clinics have been popping up, but their accessibility and the kind of care they offer vary wildly.
The COVID-19 Longhauler Advocacy Project, a patient support group, compiled a crowdsourced list of more than 400 long COVID clinics. The list, which the group did not vet for quality, ranges from rehabilitation or physical therapy practices to comprehensive medical centers with multiple specialists working together. Science News used their list plus two other patient-compiled lists, and added the 53 NIH RECOVER research sites that are studying long COVID in adults, confirming that all were active as of early October.
Physical therapy or rehabilitation-focused care can often help COVID-19 patients facing lingering symptoms or weakness after a long hospital stay. But people with long COVID should be wary of rehab or physical therapy practices that encourage exercise, which can lead to “crashes” rather than recovery, says Karyn Bishof, a long COVID patient and founder of the COVID-19 Longhauler Advocacy Project. Yet, in some states — Alaska, North Dakota, Rhode Island, South Carolina and Wyoming — rehabilitation centers are patients’ only option. Overall, almost half of the clinics included on this map are physical therapy or rehabilitation centers.
It’s no surprise that people living in big cities have the most clinics to choose from. Out of 37 clinics in New York state, all but three are in the New York City metropolitan area. California’s 29 clinics are concentrated in the Bay Area, Los Angeles and San Diego. Fourteen U.S. clinics focus on children with long COVID.
The two maps here, noting long COVID clinic locations and long COVID prevalence by state, reveal a mismatch between need and availability of relevant medical care. In mid-September, about 1 in 5 adults in Idaho, North Dakota, Oklahoma and Wyoming who had had COVID-19 reported experiencing long COVID, defined as symptoms lasting 3 months or more for a survey conducted by the U.S. Census Bureau and the U.S. Centers for Disease Control and Prevention. North Dakota and Wyoming each have just one long COVID clinic. Idaho has three. Oklahoma has six.
Traveling to a faraway clinic can be hard on long COVID patients, particularly those with no partner or caregivers to help with transportation and coordinate overnight stays. Bishof recently had to drive herself to an appointment that took almost two hours of travel each way, she says. By the time she got home, she “blacked out from extreme fatigue.”
Many of the RECOVER sites, funded by the National Institutes of Health to study long COVID, also treat adults with long COVID. But most RECOVER sites are clustered in urban areas: Out of 53 locations serving adult patients, six are in the city of Boston.
“It would be great if we could get medical schools to begin teaching these diseases,” says Jaime Seltzer, referring to long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Seltzer is director of scientific and medical outreach at #MEAction, an ME/CFS advocacy group that also works with long COVID patients. The doctors most qualified to treat long COVID are those with expertise in ME/CFS and other postviral conditions that overlap with long COVID, Seltzer says. “Several studies have now shown that approximately half of people with long COVID meet the diagnostic criteria for ME/CFS.” However, there are very few of these specialists due to limited funding and attention before long COVID became the tidal wave that it is today.
For Seltzer, clinics should offer comprehensive care from doctors in a variety of specialties who are familiar with the intense fatigue, pain, breathing problems and brain fog that can occur with postviral conditions.
With expanded education for physicians, long COVID patients might one day be able to receive care from their primary care doctors rather than waiting months for specialists. Bishof and other advocates are also pushing for the federal government to fund long COVID centers of excellence, which would provide comprehensive care while working directly with patient groups to develop standards.