Imagine you get a common viral infection, and your doctor tells you that a small percentage of people never fully recover. You might respond as I once did, not giving the suggestion a second thought. As a graduate student, I didn't have time to ponder such an outcome from mononucleosis — but the virus had other plans for me.

Many Nevadans who have had COVID, even mild infections, are waking up with the same question I asked, months or even a year or more after contracting the SARS-CoV-2 virus: When will I get better? 

Susan Sontag wrote, "Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick." In her memoir, Between Two Kingdoms, Souleika Jaoud points out that most of us spend our lives assuming that health is immutable, despite knowing that anyone, at any time, could see a reversal of their health fortunes. Even in the face of bad news, our optimism tells us sickness will be a short stay, believing that restored health is just around the corner. The "COVID is mild for most people" narrative has bolstered this mentality throughout the pandemic.  

For a true reckoning of the effects of the pandemic, we should be tracking how many people have developed long-haul COVID, also called post-acute sequelae SARS-CoV-2 infection (PASC). There are signs that long-haul COVID is worsening the labor shortage, accounting for up to 15 percent of unfilled jobs. Long after the pandemic is over, long-haul COVID will place a strain on economic recovery, yet little is being done to prevent and absorb the tidal wave of newly-disabled people. 

Incomplete pandemic statistics also make it difficult to calculate individual risk from COVID. From the beginning, getting COVID felt like playing Russian roulette. Will I get very sick for a few weeks? Will I be among the people who get hospitalized and put on a ventilator? Will I die? These risks now are broken down by age, gender, common underlying health problems, and vaccination status, but when will we begin to measure the risk of long-haul COVID? How do we, as individuals, know if we are in that group? The short answer is no one knows, but recent research identified an immune signature associated with long-haul COVID. 

There are no data on the number of Nevadans with long-haul COVID, but research estimates the condition affects roughly 1 in 4 COVID patients, regardless of infection severity. Even mild and breakthrough cases can develop lasting health complications, such as a dysregulated heart rate and blood pressure, crippling fatigue, cognitive dysfunction, clotting problems, immune abnormalities, impaired sleep, exercise intolerance, and gastrointestinal issues. A quick back-of-the-envelope estimate suggests 60,000 to as many as 150,000 long-haul cases in the state, though the number could be much higher given that the recent wave of Omicron infections is underreported. 

Despite all we know about the insidious ways the SARS-Cov-2 virus affects the human body, some long-haulers have been met with disbelief and discrimination by employers, medical providers, and families. This makes little sense, as post-infectious health complications are nothing new — COVID is not the first disease to earn this distinction. Certain viruses and bacteria are masters at rewiring and evading the human immune system; SARS-Cov-2 is one. 

Many with long-haul COVID meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex disease commonly triggered by viral and bacterial infections. While persistent infections can play a role, the hallmarks of the condition include immune dysfunction, neurological  impairments, and oxidative stress. ME/CFS and long COVID overlap considerably and likely will benefit from many of the same treatments. 

We need swift advances in medicine and policies to help those afflicted by long-term health problems from COVID. Research on long-haul COVID needs to build on the decades of ME/CFS research — we can't afford to reinvent wheels. Physicians need to learn about and address the complexities of diagnosing and treating post-infectious diseases, rather than gaslighting patients by dismissing  their symptoms as psychogenic. This blame-the-victim response to long-haul COVID ignores the growing literature on the biological causes of this condition. For example, recent research on long-haulers documented extensive microclots, which deprive cells of oxygen. Sweeping millions of newly disabled (and their families) under the rug will further strain economic recovery. Biden needs to keep his promise to ensure long-haulers have access to rights and resources under federal disability law. 

Meaningful treatments and disability support are our best hope for helping people get back into their lives after COVID. Treatments should be based on the science of the disease, not on hoping it away.

My doctor's warning to me all of those years ago was prescient. At first, I managed with only mild illness, but certain events, such as pregnancy, precipitated a further decline. My function dwindled to the point where I had to leave my job as a professor. I now live in a twilight state on the outer edges of my former life. After 23 years of chronic illness, I stand a minimal chance of ever making a meaningful recovery. 

Unfortunately, many with long-haul COVID are on a similar trajectory.

Caroline Christian is an emeritus professor at Sonoma State University who lives in Reno. She earned a Ph.D. in population biology from University of California, Davis, completing her dissertation research in South Africa. Caroline retired early after falling ill with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and now writes about the science of ME/CFS and her personal experience with the disease. Follow her on Twitter @cazzachr.