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Amy Blackstone is a professor in sociology and the Margaret Chase Smith Policy Center at the University of Maine. She writes about her long COVID experience at shortstoriesaboutlongcovid.com. 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. Members’ columns appear in the BDN every other week.
In March 2020, I boarded a flight bound for Iowa. The next morning, I awoke to news that the university where I was speaking was closing due to COVID-19. My lecture that evening would be its final public event. I contracted COVID-19 soon after and have been suffering from long COVID ever since.
The U.S. Center for Disease Control and Prevention estimates that 1 in 13 adults in the U.S. have long COVID, an illness lasting months to years after contracting COVID-19. Though we’ve had years to adjust, Maine, like the rest of the nation, remains ill equipped to combat long COVID and its effects.
Impactful research, effective provider-patient protocols, and policy that supports those suffering can only be built if those living with long COVID have a seat at the table.
I quickly learned medical providers lack training to treat patients with long COVID; it is new, confounding, and symptoms vary. Though the neurological symptoms I experience demand different treatments from the respiratory, joint, gastrointestinal and reproductive symptoms others face, we’re all sick because we had COVID-19. Treating such an illness is likely daunting but providers must begin by trusting patients.
Early in my journey, one provider dismissed my queries about long COVID, asserting that in most such cases the problem is “mental health issues.” Another, certain my symptoms were the result of a concussion, refused to refer me to specialists trained to explore other diagnoses.
It took a year for me to find a provider with the training and skills to acknowledge they did not have all the answers, ask questions, refer me to specialists, and not give up until I landed in the hands of the right set of providers. Providers should be required to refresh their skills through training targeting illnesses like long COVID. Most medical schools do not offer sufficient education on pandemics, viruses, and infection-initiated illnesses.
Today I am fortunate to have a local primary care provider who helped get me into a long COVID clinic in Boston and continues to coordinate with the specialists there. Many unanswered questions about my condition remain but I am in the best hands possible and my symptoms are being treated as well as can be for the moment. So few patients have this luxury, particularly in rural states like Maine.
There is almost nowhere in the state to send us for help. This month, MaineHealth will close its only long COVID clinic. While the national COVID-19 network Survivor Corp lists two Post COVID Care Centers in Maine, one offers post-acute services only and the other, Mercy Hospital, told me in a phone call this month that their Post COVID Recovery Program is closed.
Maine must also offer support to the nearly one in four long COVID patients unable to work and the 45 percent forced to reduce work hours. Those with the luxury of paid leave likely have or will exhaust it. Those who apply for Social Security Disability Insurance, though qualified, are too often denied.
Further, research must be fast-tracked. Identifying a test for long COVID will help get patients to the right providers more quickly. The results of tests for patients with long COVID that are offered as standard care are often normal. Too many providers may then erroneously conclude that their patient’s symptoms are “all in their head.”
There are also currently no effective treatments for long COVID. Though existing long COVID clinics are a boon for those able to access them, and we need such clinics in Maine, our goal should not stop at simply alleviating symptoms.
Maine should not let this chance to lead pass. Let’s show the nation the way life should be by taking on the challenges presented by long COVID and pulling up a chair for patients as we seek solutions.