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Amy Blackstone is a professor in sociology at the University of Maine. This column reflects her views and expertise and does not speak on behalf of the university. She is a member of the Patient-Led Research Collaborative and she podcasts at Nevertheless, Persisting. She is a member of the Maine chapter of the national Scholars Strategy Network, which brings together scholars across the country to address public challenges and their policy implications.
If you knew there was an illness costing the global economy $1 trillion per year, would you want to combat it? What if you learned this illness cost the U.S. economy $3.7 trillion over the past five years? Would it make a difference to know that an estimated 400 million people are affected globally or that one-quarter of U.S. Marines are now experiencing long-term decreases in functional performance because of this illness, or that more than 272,000 Mainers are impacted?
The illness I’m describing is Long COVID, a chronic condition lasting months to years following an initial period of COVID-19 infection. The National Academies of Sciences defines Long COVID as “a chronic, systemic disease state with profound consequences.” Long COVID leaves patients in a state of zombie-like fatigue that I once described as a feeling of being buried alive. It can affect nearly every system in a person’s body — brain, heart, lungs, liver, kidney, gut, to name just a few.
In the five years since my initial COVID-19 infection, I have had to fight, beg, and plead every step of the way: To be believed by healthcare providers, to receive the ADA accommodations to which I am legally entitled at work, to retain my health and disability insurance, to keep my friends, even to muster the will to keep myself alive.
I am one of the lucky ones. I am still able to work at least part time, increasing my hours slowly as I learn to work with, rather than fight against, my condition. I have long-term disability insurance. I have health insurance. I have a partner who believes me, supports me, and is able to take on the lion’s share of the load at home. Many survivors/sufferers are not so fortunate, facing high rates for food insecurity, difficulty paying bills, and becoming twice as likely to face housing insecurity after Long COVID.
Despite its prevalence — similar to rates of diabetes, at least 1 in 19 U.S. adults are living with Long COVID — awareness of the condition is surprisingly low. In a survey of U.S. adults in 2023, only 62.5 percent reported ever having heard of “long COVID, post-COVID, long-haul COVID, post-acute COVID-19, or chronic COVID.”
This lack of awareness isn’t limited to the general public. Even those we rely on for healthcare remain largely uninformed about Long COVID. A December 2022 poll found that only 7 percent of physicians are very confident diagnosing Long COVID. Only 4 percent are very confident treating it.
It stands to reason that physicians report feeling ill-prepared to treat this condition. Medical schools do not offer sufficient education on infection-associated chronic conditions (IACCs) like Long COVID and few states, including Maine, offer continuing medical education (CME) opportunities focused on IACCs. This is particularly striking here, where rates of Lyme disease, another IACC about which too little is understood, are high.
There is hope. Maine legislators will soon be asked to consider LR 2135, a bill sponsored by Rep. Ambureen Rana that urges providers to seek continuing medical education focused on infection-associated chronic conditions like Long COVID and Lyme. LR 2135 could be life changing for patients and providers alike.
There’s no doubt that healthcare providers are among those most deeply affected by COVID. For all our sakes, I want them to be prepared and properly trained to treat the patients who are still suffering from it. During this Long COVID Awareness Month, I implore all Mainers to consider not only the devastation wrought by this condition but also look to the hope and change that could be brought by supporting greater awareness of this and similar conditions.