Ask Patricia Anderson how she’s doing, and you won’t get a routine response. “Today I’m working and doing fine,” she said on a recent Tuesday. “But on Saturday and Sunday, I was bedridden. Long COVID is a roller coaster.”
Before the pandemic, Anderson practiced martial arts and didn’t own a car. She would walk and take buses in the Ann Arbor, Michigan area where she works as a medical librarian. Just before contracting COVID-19 in March 2020, she had accumulated —yes, she keeps track— 11,409 steps in a day.
The virus brought about extreme chills, difficulty breathing, a nervous system disorder, and cognitive impairment to Anderson. For months, she was unable to read a book. “I was very sick for a long time and never improved,” she said. Some days, fatigue would reduce her step count to three digits. Rehabilitation efforts brought progress, and then setbacks.
The dozens of symptoms collectively known as long COVID, or post-COVID, can leave anyone who has been infected out of commission. But they particularly affect older patients, who may be more prone to certain forms of the disease.
Around 11 percent of American adults have developed long COVID after an infection, according to the Centers for Disease Control and Prevention (CDC), as reported last month. This is a decrease from nearly 19 percent recorded between June 2022 and June 2023. The figure suggests that some adults leave behind the syndrome as time goes on.
Interestingly, adults over 60 actually have lower rates of long COVID in general compared to those between the ages of 30 and 59. This could reflect higher vaccination and booster rates among older Americans or more cautious behavior, such as mask-wearing and avoiding crowds.
“There may also be biological factors that we still don’t understand,” said Akiko Iwasaki, an immunologist and researcher at the Yale School of Medicine. While the understanding of long COVID has improved, she added, there is still much to be known about the disease.
Only recently has Anderson, 66, regained most of her cognitive and physical functions; she can now take between 3,000 and 4,000 steps per day. However, she always wears an N95 mask when she goes out and carries a folding seat cane to sit down when needed so that “if I’m shopping and run out of strength halfway down the aisle, I can rest.”
And she worries. Her boss has allowed her to continue working remotely, but what if the library starts demanding more in-person attendance? “I can’t retire,” she said. “It scares me.”
According to the CDC, long COVID begins when symptoms persist for a month or more after the infection. However, the World Health Organization defines it as “continuation or development of new symptoms” three months after the initial infection, lasting at least two months without any other explanation.
The extensive list of long COVID symptoms includes respiratory difficulties, cardiovascular and metabolic diseases, kidney disease, gastrointestinal disorders, cognitive loss, fatigue, muscle pain and weakness, and mental health problems. “There is hardly any organ system that long COVID doesn’t affect,” explained Ziyad Al-Aly, a public health clinical researcher at the University of Washington School of Medicine and lead author of a recent study that demonstrates how these symptoms can persist for two years. “It can affect almost everyone, from children to older adults, throughout their entire lives,” he said.
While long COVID is more likely to affect people who are severely ill with COVID and require hospitalization —and the symptoms of long COVID last longer in those patients— it can also occur after mild infections. It can occur after the first bout of COVID, or the second or fourth.
Although older individuals are not inherently more susceptible to long COVID, Al-Aly’s research, conducted from large databases from the Department of Veterans Affairs, shows that they are at a higher risk of experiencing four specific groups of symptoms:
– Cardiovascular problems, such as heart disease, heart attacks, and arrhythmias such as atrial fibrillation.
– Gastrointestinal problems, such as diarrhea and constipation, pancreatitis, and liver diseases.
Jane Wolgemuth contracted COVID-19 in June 2022, along with her husband. “He recovered in two days,” she recalled. “I was in bed for a week.”
Both of them felt better after taking the oral antiviral Paxlovid. However, months later, Wolgemuth, a 69-year-old retired bank employee from Monument, Colorado, started experiencing cognitive problems, especially while driving. “I couldn’t react quickly enough,” she explained. “Brain fog was taking over.”
Older individuals may mistake long COVID for other common age-related conditions. “They may think, ‘Maybe I’m just getting older or need to adjust my blood pressure medication,'” said Mónica Verduzco-Gutiérrez, a professor of rehabilitation medicine at the University of Texas Health Science Center at San Antonio. She co-authored the guidelines from the American Academy of Physical Medicine and Rehabilitation for the treatment of long COVID.
Long COVID can also exacerbate existing health issues for many older individuals. “If they had mild cognitive impairment, can it progress to dementia? I’ve seen it,” Verduzco-Gutiérrez said. A mild heart condition can worsen, decrease an older person’s mobility, and increase the risk of falls.
“The best way to prevent long COVID is to prevent COVID itself,” Al-Aly emphasized. As infection rates rise across the country, wearing masks indoors again and dining outdoors at restaurants can help reduce transmission.
“It’s definitely important to get vaccinated,” he pointed out. “Vaccination and boosters reduce but don’t eliminate the risk of long COVID” by 15 to 50 percent, according to studies.
“Get tested to confirm it’s COVID, then call a provider as soon as possible and check if you are eligible for Paxlovid,” he said. Antiviral treatment also reduces the risk of developing long COVID by approximately 20 percent for individuals aged 60 and older, and 34 percent for those over 70.
Since there are no longitudinal studies yet, it is unclear if older individuals recover more slowly from long COVID. Patients like Anderson and Wolgemuth have tried a whole range of treatments: supplements, electrolytes, compression garments, and various physiotherapy regimens. “But we don’t have a medication that has been proven to reverse it,” Iwasaki concluded.
Certain rehabilitation approaches have shown effectiveness, noted Verduzco-Gutiérrez, but there are not enough programs or clinics with expertise in long COVID. Some doctors dismiss prolonged symptoms, according to patient reports. This leaves them largely on their own, searching for solutions.
“They are organizing together to advocate for research and find treatments,” Iwasaki said, comparing long COVID patients to AIDS activists in the 1980s. She co-leads the LISTEN study at Yale, which works with long COVID patients to better understand their conditions.
The government of Joe Biden recently announced a new federal office to lead research on long COVID, and more clinical trials are starting. However, for now, many patients rely on groups like Long COVID Support and Covid-19 Longhauler Advocacy Project, and participate in Patient-Led Research Collaborative.
Sheila McGrath, a 71-year-old resident of Herndon, Virginia, recovered from her first COVID infection in February 2020 but has been suffering since her second episode five months later. Although her health has improved, “I haven’t been the same since”, she said.
Now she and Anderson co-host an online support chat for long COVID. “Someone often ends up crying,” McGrath said. “They are very frustrated because they are not being heard, not being validated, being told it’s psychosomatic, and being denied treatment. None of us wants to be sick.”
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