“All these plans for my life plus the hundred backup plans are squashed by not being able to perform,” said Alex Schell.
It is one thing to concede that long COVID exists as a societal problem for people with vulnerabilities such as advanced age, preexisting health conditions, or nearly dying in the ICU. But what about a nationally ranked Division I long-distance runner who based every decision in the past 10 years of on making the 2024 Olympic trials?
Schell, 21, recently found his way to one of our Critical Illness, Brain Dysfunction and Survivorship Center’s free long COVID support groups at Vanderbilt University Medical Center. He explained to me that in the nearly two years since he had mild COVID in the prevaccine era, “Not only can I not run anymore, I’ve also lost everything I hoped for. Who I envisioned myself to be is largely a past idea. It’s just a monumental loss of a dream.”
This post-viral syndrome has become for Schell and so many like him an ongoing nightmare. By researchers’ best estimates, more than 1 in 8 people with COVID-19 will have some array of the 200 odd symptoms reported in this disease for months to years. Long COVID is quickly emerging as the next public health challenge. Alarmingly, kids under 18 are not spared. Early reports of the more contagious yet less severe BA.5 Omicron variant show over 20 percent US adults infected are still experiencing symptoms one month after infection.
What are these land mines left behind by the SARS-CoV-2 virus? Are you at risk for them to explode even if you never get very sick from COVID? A study released earlier this month suggests that people suffering from long COVID end up with reservoirs of active SARS-CoV-2 virus — documented in our lungs, brain, and GI tract — which produce ongoing levels of viral spike protein in the blood. A year after becoming infected, patients’ levels can sometimes remain as high as were found during early infection.
Let’s focus on just two major organs: the heart and brain.
A new investigation of a selected group of 346 patients with documented mild COVID found diffuse swelling of the heart muscle on a cardiac MRI at 3 and 12 months after their infection — which was more pronounced in those with ongoing symptoms — as compared to 95 controls without COVID. None of these people had preexisting cardiac conditions and none was ever hospitalized, yet 73 percent had shortness of breath, palpitations, and chest pain at three months with 57 percent still experiencing these symptoms at one year.
Perhaps more disturbing are the rising reports of profound cognitive impairment on par with clinical dementia. Neuroscience now shows that astrocyte and other glial cells are directly infected by the virus, which leads to indirect cell death of millions of neurons and ultimately a shrinking of our brain even after mild COVID. And children’s brains can be affected just like adult brains.
COVID hijacks mitochondria in both heart muscle and brain cells, which may provide a link to the neck-up and neck-down disease plaguing long COVID patients. Our cells have hundreds of thousands of mitochondria that allow us to use food and oxygen to harness energy for everything we do in life from walking to talking. COVID is a form of viral sepsis, and there is an association between recovery from sepsis and mitochondrial dysfunction. Another disease people often compare to long COVID is myalgic encephalomyelitis/chronic fatigue syndrome, which some posit is at least in part due to diseased mitochondria. We are early in this line of research, with much to learn before specific therapies are available.
Where does this leave people like Schell? He thought that by now he’d have sports endorsements and be on his way to international competition. Instead, he admitted, “I played an hour of pickleball with my girlfriend the other day, and that put me out for days.”
I see three paths forward to ease the pain of long COVID. First, there is a burgeoning research program developing in academic and industry circles. From the National Institutes of Health’s Recover program to grass-roots nonprofit efforts like the Long COVID Research Initiative, we are designing robust studies to discover the truth about different medications, cognitive rehabilitation efforts, and more.
Second, we must all determine our own risk tolerance. Indoor public exposure to COVID is much less risky if masked. Regarding vaccination, one in three people across the world remains unvaccinated. Remember that COVID-related deaths in 2022 are five times lower in vaccinated than in unvaccinated people. In addition, vaccination lowers the risk of long COVID by as much as 75 to 85 percent, and the new bivalent B5 booster vaccine is now available.
Third, we can all work together as a community to be more empathetic and to validate and advocate for those suffering from long COVID. Too many are still silenced and made to feel that their invisible injuries are fabricated.
Schell remains optimistic. “New research is happening,” he said. “Maybe a medicine will come out, because I’m not ready to face the possibility that I don’t get better. I mean, I just think back to the joys that I experienced through running, and the joys I experienced before I had this. I think life can be that sweet again, and there is light at the end of the tunnel. There’s no choice but to look up because there’s nowhere else to look.”
Dr. Wes Ely is a professor of medicine and critical care at Vanderbilt University and the Nashville VA. He is co-director of the Critical Illness, Brain Dysfunction, and Survivorship Center and author of “Every Deep-Drawn Breath.” He can be found on Twitter and TikTok @WesElyMD.