Wishful thinking won’t make the coronavirus pandemic go away and neither will strong words by President Joe Biden, who recently declared the pandemic over. We cannot abandon the millions plagued by long COVID, whose symptoms can include difficulty breathing, cognitive dysfunction, fatigue that interferes with everyday activity, and a worsening of symptoms after minimal physical or mental effort.
One critical link to long COVID is chronic fatigue syndrome (CFS) or, as it is known in the medical world, myalgic encephalomyelitis (ME). Found in 43% of long-COVID cases, this serious condition provides critical lessons not only for treating individual effects of long COVID but also addressing the unequal effect it has on Black, Brown, and Indigenous communities. Once misunderstood as a disease of White affluent communities, the condition affects communities of color more significantly, researchers have found. This fact is concealed by racism in the healthcare system, which more often excludes or mistreats patients of color. White people are still more likely to receive care for ME/CFS, and data suggest the same of long COVID.
That ME/CFS worsens with exertion is a cruel irony for many marginalized people, who are more likely to encounter everyday discrimination. As a Taiwanese American trans person with this condition, I have experienced symptom flares ignited by strangers’ hostility.
From the 1980s to the early 2000s, many medical and mainstream publications mischaracterized the condition as psychosomatic, calling it “Yuppie flu,” and it was thought to primarily affect middle- and upper-class White women. The conventional, and highly sexist, wisdom of the day suggested these women were struggling with their “expanding role” in fast-paced workplaces.
Unsurprisingly, much scientific and public knowledge about this condition focuses on White, well-resourced patients. When researchers examined experiences across seven specialty clinics from 2012 to 2017, 94.7% of enrolled patients were White and 77% had a college education or more. This disproportionate representation appears to be a condition of White affluence because people with money are the ones who can get care. Studies attuned to racial difference, however, find that ME/CFS is more prevalent among communities of color.
The few clinics specializing in this condition — the Bateman Horne Center, Nova Southeastern University’s Institute for Neuro-Immune Medicine, Stanford University’s ME/CFS Initiative, and the Hunter-Hopkins Center — have lengthy wait lists. Many of the clinics do not take health insurance, and some require membership fees or work with a limited number of providers. Clinicians at long-COVID centers recently told MIT’s Technology Review they “see few people of color in those clinics,” despite the pandemic’s disproportionate effects on Black and Brown communities.
People of color, meanwhile, are much more likely to be uninsured, unemployed, or among the working poor. Surveys and treatment centers that require formal COVID-19 diagnoses will likely undercount African American patients, who are more often disbelieved by physicians even though they experience worse cases of COVID-19 and long COVID.
Native Americans and Native Alaskans are diagnosed with COVID-19 at 3.5 times the rate of White people but have been grossly neglected by even basic data-collection measures. The Household Pulse Survey, which provided important statistics about the prevalence of long COVID nationwide, did not include a distinct category for Native Americans, Pacific Islanders, or Alaska Natives, instead lumping them into the category of “other races and multiple races.”
Data also suggests worse health outcomes in both acute COVID-19 infections and long COVID for Latino patients. And research on Asian American communities remains limited, but a 2021 study found Asian Americans were hospitalized by COVID-19 at 2.4 times the rate of White people. Among Asian Americans with limited English proficiency, the rates were even higher.
COVID-19 has already lowered the life expectancies of Black and Latino people, Asian Americans, Native Americans, and Pacific Islanders significantly more than those of White Americans. Amid what experts call a “mass disabling event,” opening up more avenues of research and policy that address those most affected will also create the most change.
V. Jo Hsu is an assistant professor at the University of Texas at Austin and the author of “Constellating Home: Trans and Queer Asian American Rhetorics.”