Why is the medical community still ignoring long COVID?

In 2017, I began feeling terrible after any physical activity. After years as a fitness professional, I suddenly found that ordinary workouts left me weak, unable to concentrate and sometimes so lethargic that I couldn’t move. When I told my doctors, they said it was impossible.

Not only is it possible, this phenomenon has had a name since at least 1988. That year, Dr. Anthony Komaroff of Harvard Medical School identified “post-exertional malaise” (PEM) as a symptom of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS) — a complex chronic disease that can follow viral infections. In 2003, Health Canada recognized PEM as the defining trait of ME/CFS. Despite these many decades of awareness, however, medicine has largely ignored PEM, and has no effective treatments for it.

This lack of knowledge is now a public health crisis, thanks to the COVID-19 pandemic. Approximately half of people with long COVID meet the criteria for ME/CFS, and a majority of long haulers experience PEM specifically. PEM’s adverse reaction to stress, whether physical, emotional or cognitive, has left up to 4 million people with long COVID out of work.

Patients’ experiences of PEM are still often dismissed, in part because it runs counterintuitively to most understandings of health. Exercise improves a wide array of conditions. In patients with PEM, however, exertion can trigger cellular dysfunction, impaired oxygen extraction, immune irregularities, and inflammation of the brain and spine. Exercise-based treatments have caused long-term or permanent damage to some patients’ health.

The fact that PEM appears in very few other diseases — and challenges existing medical assumptions — should make it the subject of intense scientific interest.

Rather than building on four decades of knowledge about PEM and ME/CFS, many of the appallingly slow studies on long COVID are repeating past mistakes. Most recently, the National Institutes of Health’s $500 million RECOVER study was criticized for focusing on exercise as a potential treatment for long COVID. Expecting exercise to treat long COVID not only ignores the harm it could do to a majority of patients, it also neglects one of the distinguishing and most poorly understood traits of long COVID and ME/CFS.

Compounding the problem, the NIH has barely gotten any long COVID studies off the ground, despite $1 billion in federal funding, and it will not have findings for several more years. A search of the NIH’s clinical trials database, which includes registered studies in all 50 U.S. states and 221 countries, finds only 11 active studies on treatments for long COVID. Of these, three are exercise trials and one applies cognitive behavioral therapy. Studies that are currently recruiting involve treatments such as self-management of symptoms and — from the Mayo Clinic — mindfulness through meditation. Only one study focuses on PEM specifically.

Since “long COVID” likely encompasses a variety of conditions triggered by COVID-19, a subset of patients might well benefit from exercise and meditation. But just as no one would expect yoga to cure lupus, which can also be activated by viruses, these interventions cannot take the place of meaningful treatments for biomedical dysfunction.

In the United States alone, millions of people are losing whole stretches of their lives to long COVID, ME/CFS and the limitations imposed by PEM. Children are missing crucial years of education; working-age adults are fading from their careers and falling into financial peril; and seniors are finding their bodies and minds rapidly declining. For those of us waking each day to unstable health and faint energy, every hour matters. It is devastating to watch resources squandered on ineffective and potentially harmful exercise studies.

If long COVID researchers looked, they would find a strong foundation of previous studies on which to build. The NIH should coordinate long COVID studies so that researchers can share knowledge, including existing research on PEM and ME/CFS and what we know about some patients’ unusual — and highly damaging — responses to exertion.

It’s been six years since my doctors dismissed the connection between physical activity and symptom exacerbation. By 2020, any mild activity left me supine on the floor, with pain and lethargy that could last weeks at a time. I don’t know if I would have been less sick if I’d had better-informed care. I do know that my life would have been easier had doctors been able to identify PEM and help me alleviate its effects sooner. I also know that the millions of people with long COVID around the country would have much better care right now if medicine had taken PEM seriously over the past four decades.

When government officials saw their own lives and livelihoods imperiled by COVID, they mobilized resources at record speed. The many of us still sick — and the many more who will become sick with each COVID-19 infection — need that same care and urgency.

V. Jo Hsu is an assistant professor who studies health inequities at the University of Texas at Austin, and a person living with ME/CFS. They are the author of “Constellating Home: Trans and Queer Asian American Rhetorics” and a Public Voices Fellow of the Op-Ed Project.