We must listen to, learn from COVID long-haulers

In an article that appears in this week’s Post-Record, the editor of a new anthology of writings by COVID “long-haulers” notes that “long COVID” — the cluster of often debilitating, post-acute infection health issues that have plagued tens of millions of Americans over the past four years is not something we should wish on our friends, family, neighbors or selves. 

“Long COVID leaves us exhausted, stressed, lonely, and grieving the fuller lives we once led,” Mary Ladd, the founding editor of the newly released “The Long COVID Reader,” wrote in the book’s introduction. “Many of us are debilitated, newly disabled, or unable to participate in society anymore.”

The long COVID anthology includes an essay from Washougal resident Rowan MacDonald, who details his struggle to finish a short walk to a bench near his home. 

“I give thanks for being able to summit this Everest today, for reaching a graffiti-ridden bench and cigarette butts and broken glass. Because by making it here, I have overcome my broken body,” MacDonald writes, saying the walk to the bench, though painful, is his “last remaining connection to the world.”

“This journey requires steely determination, because my symptoms grow with each step, occasionally rising to the surface. Such symptoms need chess-game concentration levels to push through,” MacDonald wrote in his essay, “The Journey to the Bench.” 

Ladd said the book contains many stories of not just people’s struggles with long COVID but also the added pain of the friends, family members, coworkers and medical providers who don’t fully listen to — or possibly believe — the millions of people for whom COVID is not just a few days of coughing and fatigue but months or years worth of debilitating pain, breathing troubles, heart palpitations, the inability to control body temperature, extreme dizziness, high blood pressure and frightening neurological issues. 

There is still so much we do not know about long COVID. 

As Penn Medicine noted just two months ago: “The mechanisms that cause long COVID have not been studied in depth, and treatments that are widely effective in reducing these long-term symptoms have not yet been developed.”

But here is what we do know nearly four years after the world first heard rumblings of a novel coronavirus:

• It is not a rare phenomenon: According to research published in the CDC’s Morbidity and Mortality Weekly Report in August, “estimates of long COVID incidence among nonhospitalized adults with COVID-19 range from 7.5% to 41%”
• It is impacting our health care systems: That same report noted that “long COVID places substantial strain on the health care system. A retrospective cohort study among eight large integrated U.S. health systems found that SARS-CoV-2 infection was associated with a 4% increase in health care utilization over the (six) months following a positive SARS-CoV-2 test result.
• It is not just older, non-working adults who are susceptible: An analysis  of more than 15,000 US residents ages 18 to 69 who had been infected by SARS-CoV-2, which was published in the Journal of the American Medical Association, found that “long COVID may be affecting the workforce” and cited a survey showing nearly 15% of those surveyed were experiencing long COVID symptoms and that these COVID “long-haulers” were more likely to be unemployed. Some researchers have suggested long COVID has caused the loss of 1 million U.S. workers and cost the economy roughly $170 billion in lost wages. 
• Long COVID can negatively impact every part of our body, including our brains: As the 15,000 study noted above found, nearly half of those experiencing long COVID said they had “brain fog” or memory impairment. And those cognitive declines, according to one doctor who leads a neuro COVID clinic in Pennsylvania, combined with fatigue are the “primary reasons” many long COVID patients cite for their inability to perform work duties the way they did before becoming ill with COVID.  “Cognitive symptoms, in particular, are not associated with an outward, physical disability, but these data demonstrate that these symptoms are associated with a real-world effect, like going back to work,” the doctor told the JAMA Network.

We cannot afford to keep ignoring the impacts of allowing an airborne, intensely contagious virus like SARS-CoV-2 to continue mutating and infecting people over and over – including those who have been vaccinated against it. The first step to better understanding the effects long COVID is having is to better understand those who are suffering from its impacts. 

Reach out to family and friends who have mentioned they have long COVID symptoms. Read the essays and personal accounts in books like “The Long COVID Reader.” Keep up on the latest research on sites like the National Institutes of Health’s Researching COVID to Enhance Recovery (RECOVER) website at recovercovid.org or peruse what long-haulers are talking about at grassroots, long-COVID focused sites like SurvivorCorps.com. Find resources covid.gov/be-informed/longcovid. 

And, most importantly, now that wastewater data shows COVID is again ramping up across the nation just in time for the winter holidays, brush up on the simple methods that can prevent COVID infections in the first place: wearing a quality respirator mask in crowded spaces; running HEPA and other air-cleaning filters inside your home, office or school; avoiding crowds; staying home when we’re feeling ill; testing if we have COVID symptoms like coughing, a runny nose, headache or stomach issues, a symptom that accompanies many of the newer COVID variants; and staying up to date on our COVID vaccines.