In the early months of 2020 as Covid swept the world, I was a science writer with a mandate to tell the human stories of the pandemic.
I started reaching out to patients living through the aftermath of Covid, people who got sick and stayed sick. As leaders were telling the public that those infected with the virus would recover within a couple of weeks, I met dozens of survivors whose bodies gave a much different accounting of the facts. Each individual’s story seemed to echo the others, fitting a pattern and timeline apart from the mainstream narrative. Nationwide, millions were suddenly experiencing the same seemingly new disease, long Covid.
But for those following the science of chronic illness—and those who’d lived it themselves—the appearance of long Covid was as predictable as the rise of the morning sun. For several decades, scientists had been finding disruptions in the bodies of those with post-infectious conditions. The specific pathways are too numerous to comprehensively list here, but studies show they include weakened immune response due to low levels of virus-fighting
natural killer cells and
heightened inflammation driven by elevated levels of signaling chemicals called
cytokines. The list of abnormalities also includes the reactivation of viruses previously dormant in the body and the
dysregulation of cortisol, a hormone needed in order to properly respond to stress.
A host of infectious triggers, from
SARS and
Epstein–Barr virus to
Lyme disease and
strep, can set off the same constellation of disabling symptoms, including brain fog,
unrelenting fatigue, and pain. Such infections can also make an
imprint through
sleep disorders,
nerve damage, and air hunger
, where you feel as if you can’t get enough air and struggle to breathe. In the worst cases, such patients experience
disability on par with late-stage AIDS or
congestive heart failure. Despite continued reports, patients with this presentation are routinely dismissed. If only their symptoms could be traced to a physiological cause, a whole class of illnesses currently labeled “medically unexplained” or “contested” would be routinely understood by mainstream medicine. And despite the utter tragedy of long Covid, our newest pandemic illness offers the opportunity for just that.
But instead of accepting evidence emerging from university labs and teaching hospital clinics devoted to the study of long Covid, a new movement has evolved to lump together these endlessly sick patients with others who don’t get well—including individuals with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and persistent symptoms of Lyme disease. Rather than accepting the reality of our latest agonizing illness, a string of news articles, backed by a contingent of scientists, has begun to call long Covid “psychogenic”—all in the head. We are at a pivotal moment. With the Centers for Disease Control and Prevention (CDC) estimating that nearly one in five people develops long-term symptoms after a Covid infection, it is time to rise up and stop the gaslighting—the rejection of the latest research and the experience of patients. We must stop this dismissal before long Covid joins ME/CFS and persistent Lyme as just one more contested disease.
