The first person I met with long COVID was Kenton Kaplan, a student I was mentoring at Georgetown University. Without much warning, he had called me in January 2022 to drop out of our departmental honors program. As we talked over the next year and a half, he told me about debilitating fatigue, dizziness and intense memory inconsistencies. He and his doctors believed that these symptoms were related to a COVID infection he likely caught at a New Year’s Eve party.
Kaplan recovered and graduated with honors from Georgetown, but since meeting him, I’ve encountered many other people with long COVID—a syndrome of neurological, psychological and physical issues that lasts long after the disease-causing virus, SARS-CoV-2, is gone. As a medical anthropologist, I’ve been fascinated by this postviral illness as both a sociocultural and a biological phenomenon. Millions of people seem to have it, even as some health care professionals still believe postviral syndromes are “all in your head.” I believe that even I have had some form of it—for several months after my first COVID infection, I was struck with anxiety, depression and fatigue that eventually passed. I have spent hundreds of hours thinking about long COVID and interviewing people—patients, caregivers, physicians, nurses, academics and policymakers—about their firsthand experiences.
One of the physicians I interviewed was Anthony Fauci, former head of the National Institute of Allergy and Infectious Diseases (NIAID). He is currently a faculty member at Georgetown. As part of the book I am now writing on contested chronic illnesses, we talked about postviral illnesses such as long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the challenge of understanding our body after an infection has ravaged it. I was surprised to learn that postviral illnesses have been on the embattled doctor’s radar for about 50 years and that early research on these illnesses fell by the wayside as we struggled to understand their causes.
Fauci and I met over Zoom. I was right on time, albeit a bit disheveled. He, however, was put together and already waiting for me, ready to talk about the question of whether postviral illnesses such as long COVID are real.
Fauci told me how, when he arrived at the National Institutes of Health in 1968 he would see patients who had interesting “symptomatology,” as he called it: messed-up bodily systems from brain to gut, including the kidneys, heart, blood and nerves. This, he thinks, was perhaps his first concentrated look at what we would initially call chronic fatigue syndrome and eventually refer to as ME/CFS. Half of the people who experience chronic fatigue for several months or years have also had one or more of the following diagnoses: infections, anemia, thyroid dysfunction, diabetes mellitus or cancer. And neuroscientists think that symptoms such as fatigue likely reflect a combination of many factors triggered by one event (such as SARS-CoV-2 infection) in people with chronic stressors, traumas that irreversibly affect the body or previous infections that linger through viral reservoirs (infected cells that do not actively produce viral particles).
Fauci told me, “This was before chronic fatigue syndrome ... even had a name.... [People were very sick] following a variety of what they perceived as viral infections.” He said that back then we didn’t have the diagnostics that we do now and that “there would be things about their demeanor and their ability to function, which were markedly compromised for variable periods of time.”
I found this off-the-cuff comment to be striking because it meant that ME/CFS activists have been struggling for at least five decades to get recognition for their disabilities despite having what medical anthropologist Emily Lim Rogers described in a 2022 paper as the “dual-pronged challenge” of people with ME/CFS confronting “stigma caused by its lack of biological verification and societal acceptance” and doing so “in bodies that are exhausted.”
Fauci said, however, that he and other infectious disease physician-scientists were soon swooped up into the still-ongoing global emergency of HIV/AIDS, leaving relatively less time and resources to devote to chronic, debilitating but non-fatal conditions. These illnesses frequently don’t get the attention they deserve and it leaves many people suffering without the possibility of a diagnosis, let alone a cure.
We talked about more recent COVID cohort studies showing that more women are affected by long COVID than men. “Perhaps they are more susceptible to the dysregulation of whatever immune response is triggering ... long COVID,” Fauci told me.
These gendered trends should not be surprising. In addition to long COVID and ME/CFS, chronic Lyme disease, multiple sclerosis and autoimmune diseases such as lupus affect women more often. For centuries women have been dismissed, ignored and punished for thinking differently about our body than the dominant culture does. This is more intense for women whose race, class, gender, sexuality, nationality, documentation status, and so on differs from their doctor’s. But this evidence simply can’t be set aside.
Because long COVID is often described as a neurological disease, an idea that is intriguing to me is related to the vagal nerves. These are responsible for many of the automatic functions in our body, such as breathing, standing and calming ourselves. Mike VanElzakker, a neuroscientist at Harvard Medical School, has argued that perhaps SARS-CoV-2 tricks the immune response by linking to this nerve bundle, making the body think it’s under attack when in fact it is relatively healthy. This would mean that the vagal nerves’ calming action is getting delayed—so the panic, heart palpitations and constant anxiety many people have described to me make sense. Certainly more research on women’s nervous systems and the interplay of immunology, neurology and anthropology is imperative.
A lingering question is whether long COVID and ME/CFS are the same thing. Fauci emphasized what makes long COVID distinct from ME/CFS, even when the symptoms are the same, is the presence of a specific virus and the knowledge of when the infection occurred. He told me that historically, we didn’t have the ability to pinpoint what infectious agent had caused a person’s ME/CFS. We could maybe see what antibodies a person had against different viruses, but we never knew exactly when the infectious event happened, so we couldn’t say with any certainty what caused someone’s disease.
Finally, Fauci emphasized to me how important it is to do more research on postviral syndromes and, specifically, on how long COVID affects people differently. He told me, “There is going to be a group of people that, somehow or another..., have a genetic predisposition, just the way you have a genetic predisposition to diabetes or to rheumatoid arthritis or to lupus.... When [these people] get a viral infection, [it] somehow dysregulates [multiple functions and organ systems].”
But the key, he said, would be the kind of long-range, multiple-year funding that isn’t necessarily dependent on a result for renewal—the type of funding that has existed in the past where so long as the work was good, he said, the researcher’s job would be safe. We talked about how current funding structures don’t really support this kind of open-ended research.
I was struck throughout the interview by Fauci’s candor. During the pandemic, seemingly every word he uttered was interpreted with a political edge. I almost laughed when he breezily said near the end, “I am just giving you my scientific opinion in my experience as an immunology, virology, infectious disease guy.” Having served NIAID for five decades, advised seven presidents, led the nation through several pandemics and set a high bar for what a scientific leader can do, I think that with his words, we can now put to rest the question of whether long COVID is real.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.