The only way to get help for the millions of Americans with long COVID is where they live. Although long COVID clinics are increasingly common, their availability and the quality of care they provide can vary greatly.
A patient support group, the COVID-19 Longhauler Advocacy Project compiled a crowdsourced listing of over 400 long COVID clinics. The list was not vetted for quality by the group and includes everything from rehabilitation or physical therapy practices to complete medical centers with multiple specialist working together. Science NewsTheir list was compiled with two additional patient-compiled lists. We then added 53 NIH research sites that study long COVID in adults to the mix. This confirmed that all of them were active as 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. Nearly half of all the clinics on this map offer rehabilitation or physical therapy.
It’s no surprise that people living in big cities have the most clinics to choose from. All 37 New York State clinics are located in New York City. California’s 29 clinics are concentrated in the Bay Area, Los Angeles and San Diego. The U.S. has 14 clinics that focus on long-term COVID.
These maps, which show long COVID prevalence and clinic locations, highlight a mismatch in the availability and need for relevant medical care. Mid-September saw about one in five adults with COVID-19 in Idaho and North Dakota reporting long COVID. This refers to symptoms lasting three months or more. Survey conducted by the U.S. Census Bureau and U.S. Centers for Disease Control and Prevention. Wyoming and North Dakota each have one COVID clinic. Idaho has three. Oklahoma has six.
Long COVID patients who are unable to travel to distant clinics can find it difficult, especially if they don’t have a partner or caregiver to coordinate their overnight stay. According to Bishof, it took her nearly two hours to travel to an appointment. By the time she got home, she “blacked out from extreme fatigue.”
Many of the REFRESHSites funded by the National Institutes of Health for long COVID research also treat COVID-related illnesses in adults. RECOVER sites are concentrated in urban areas. There are 53 locations for adult patients. Only six of them are in 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 the director of scientific outreach and medical outreach for #MEAction (an advocacy group for ME/CFS patients with long COVID). Seltzer states that doctors who are experts in ME/CFS or other postviral conditions, such as long COVID, are the best qualified to treat it. “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.
Seltzer believes that clinics should provide comprehensive care by doctors from a variety of specialties who can deal with the severe fatigue, pain, and brain fog that can be associated with postviral conditions.
Patients with long COVID may be able to see their primary doctors instead of waiting for specialists. Bishof and others are pushing for federal funding of long COVID centers, which would offer comprehensive care while working with patient groups to establish standards.
