Struggling with mysterious symptoms, long COVID sufferers want answers

Published on: January 24, 2023 6:00 AM EST

A healthcare worker prepares a dose of the COVID-19 bivalent booster at the start of a vaccination campaign for people 80 years and older, in Santiago, Chile, Wednesday, Oct. 26, 2022.
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This is part of our Better Baltimore series, which aims to use readers’ feedback and ideas to hold government agencies and powerful entities accountable. We’re also interested in stories about readers and communities driving change on their own. Have a tip? Tell us.

Before the first COVID-19 vaccines were readily available in Maryland, Rachel Ledney Odom was already sick and getting sicker.

A fever, accompanied by a headache, cough, fatigue and heart palpitations put her in the hospital for a week. At home, she developed recurring pneumonia, brain fog, chest pain and myocarditis, or inflammation around the heart muscle.

Today, Odom still feels sick and said friends, family and doctors don’t understand the enormity of her burden. She’s sidelined from her work, struggled with family responsibilities and needs assistance with once-mundane tasks, like showering. Fearing bringing COVID-19 back into their home, Odom’s teenage son stopped going to in-person school.

A psychologist based in Odenton, Odom is one of an unknown, but likely massive, number of patients with long COVID, which has proven to have lasting changes on the body for reasons researchers and medical professionals are still trying to understand.

Long-haul patients are a varied population, both vaccinated and unvaccinated, who have experienced both severe and mild cases of the coronavirus and have reported symptoms of all types and severity throughout the body. It has been reported in patients of all ages, including children. Some patients have lingering symptoms while others recover for a time and regress later.

In response to a Baltimore Banner reader seeking more about the data and treatment available to people experiencing long COVID, we consulted Baltimore City Health Commissioner Dr. Letitia Dzirasa and other regional public health experts for answers.

Question 1: Where is the data?

Estimates of those infected with COVID-19 and who continue to experience lasting damage vary, and the National Center for Health Statistics is collecting long COVID data through the end of this year. Studies elsewhere, including at the National Institutes of Health, the Centers for Disease Control and Prevention, and Johns Hopkins University also are ongoing.

The CDC has initial data based on a U.S. Census Bureau survey conducted through last year. As of December 2022, an estimated 14.4% of all U.S. adults reported long COVID symptoms, most aged 40 to 49. More women reported symptoms than men, and more transgender people reported symptoms than cisgender men and women.

The survey also measured activity limitations in adults who experienced long COVID symptoms. It showed 80.4% of adults currently experiencing long COVID report limitations, or 4.8% of all adults surveyed. A quarter said the limitations are significant.

Regional data is more scarce. The Maryland Department of Health does not track long COVID on its COVID-19 dashboard, which includes current and historic figures on hospitalizations, vaccinations and cases . A state webpage advises that anyone infected can have long COVID symptoms.

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Dzirasa said the dearth of regional data points to limitations in data collection that undermines researchers’ understanding of the condition. Studies are underway that could offer explanations over time.

Dzirasa emphasized the need for “medical homes,” where patients have a primary a point of care. For those without insurance or without primary care access, Dzirasa recommended starting with a federally qualified health center, government-funded nonprofit health center or clinic that serves medically underserved areas and populations.

Question 2: What remains unknown?

Investigators at CDC and elsewhere have yet to establish a universal definition for long COVID. How long do symptoms last? Do symptoms need to persist or worsen? The CDC says only that post-COVID conditions can last weeks, months or years.

The federal agency awarded a five-year research grant in November to Rockville-based Abt Associates, a research and consulting firm, to answer such questions. The firm will collect data by monitoring patients over time in Utah, Philadelphia, Indiana and Arizona and by examining medical records of other COVID patients.

Danielle Hunt, an epidemiologist and principal investigator for Abt, said investigators are seeking varied demographics across the sites. Research is in the early stages.

Among the questions CDC and its partners hope to answer, Hunt said, is whether COVID-19 vaccines reduce the occurrence of long COVID. Abt hopes to provide data across age groups, Hunt said, and study the influence of health disparities.

“This is something where we’re still developing it; we don’t know all the questions yet,” Hunt said. “We have objectives, but also this is exploratory, and there may be some things that pop up as we come across anomalies in the data.”

The Johns Hopkins COVID Long Study also is underway, using a survey to gather data on adults (those who have had COVID as well as those who haven’t) about their symptoms and how they have changed over time. About 70% of the 25,000 participants necessary for the study’s completion have taken the 20-minute questionnaire.

Patients like Odom, meanwhile, are struggling with their own questions: Will her increased heart rate improve with time? What are the implications of a lung scan showing a pattern of progression and regression? Is this her new norm?

Question 3: What do we know?

Though much remains unknown, those treating long COVID patients say the best prevention is to avoid contracting COVID-19.

Early research also shows getting vaccinated reduces the likelihood of severe illness, which can lead to other medical complications, said Dr. Panagis Galiatsatos, a pulmonary and critical care physician at Johns Hopkins Medicine.

His long COVID patients who get vaccinated, or who have been previously, tend to see improvement quicker. He also said masking could minimize contracting the disease that could lead to long COVID.

He emphasized there still is no test for long COVID and no specific treatments. Some patients will have no resolution.

“We’re really left with managing the symptoms and hoping for the best,” Galiatsatos said. “A big win for 2023 is if we learn how to really characterize this well to help physicians.”