Sen. Tim Kaine (D., Va.) introduced legislation on Wednesday to fund government studies and expand treatment of a cluster of post-coronavirus symptoms referred to as "long COVID."
Kaine, who alleges he is a victim of long COVID, wants the National Institutes of Health to gather data, fund research, and "expand educational and community resources" for people who claim they are affected by the disease, the Washington Post reported. The bill comes one year after an NIH announcement in February 2021 that it was launching a $1.15 billion initiative aimed at combating the "prolonged health consequences" of COVID-19. But despite the federal initiatives and immense media coverage, the phenomenon of long COVID has flummoxed medical experts.
Long COVID, which is sometimes called "post-COVID" by public health bodies, encompasses a broad range of lingering symptoms after a COVID infection. Some symptoms recorded include "tiredness or fatigue," "brain fog," "joint or muscle pain," "cough," "rash," "heart palpitations," "dizziness," "diarrhea," and "mood changes," according to the CDC. There are no tests to determine whether someone has it, and it reportedly affects hundreds of thousands of people who have been infected with COVID-19.
"This is a condition that we don't even have an agreed-upon name for yet, and we don't have any understanding really of what's going on down at a chemical level," Greg Vanichkachorn, the medical director of Mayo Clinic's COVID-19 Activity Rehabilitation Program, told the Post, adding that a definition of the disease "depends on who you ask right now."
Jeremy Devine, a resident psychiatrist at McMaster University in Hamilton, Ontario, argued in a Wall Street Journal editorial last year that long COVID is "largely an invention of vocal patient activist groups." He says symptoms attributed to long COVID could be "psychologically generated" or "caused by a physical illness unrelated to the prior infection." Devine said the "topic deserves serious study."
The first report on long COVID was produced in May 2020 by the "queer feminist wellness collective" Body Politic, which represents "a global network of COVID-19 patients, chronic illness allies, and health and disability advocates," according to its website. But not even a quarter of the report's respondents had ever tested positive for COVID-19 at the time. A second report by the group in December 2020 showed only 16 percent of its participants "had tested positive for the virus at any time," Devine noted.
Then-NIH director Francis Collins, however, cited the group's surveys, congratulating the "citizen scientists, who belong to the online Body Politic COVID-19 Support Group," for adding to the national health agency's understanding of long COVID.
Body Politic joined another advocacy group, Solve ME/CFS, which advocates for those who suffer from chronic fatigue, to launch the "Long COVID Alliance" the same month as the NIH's long COVID funding announcement.
Two years after he developed mild symptoms in March 2020, Kaine said he still "feels like all my nerves have had, like, five cups of coffee."
"I can do everything I could do before. I don't lose sleep over it. It's not painful, it's not debilitating. It's just weird," Kaine said, adding that "for a lot of people it's more than weird. It's painful. It's debilitating."
"A lot of people have these symptoms and they don't know if they'll ever go away," Kaine said.
For Devine, though, fear of chronic illness is likely the underlying problem.
"A central feature underlying many psychosomatic-symptom disorders is a fixed belief that one is ill and unlikely to recover," Devine said. "By drawing attention to and legitimizing the ever-present threat of long COVID, medical authorities will lead a large group of impressionable patients to believe that their COVID-19 symptoms have not resolved and that they are helpless victims of an unrelenting sickness."