Ask Patricia Anderson how she is doing, and you probably will not get a routine answer. “Today, I’m working and I’m fine,” she said on a recent Tuesday. “Saturday and Sunday, I was bedridden. Long Covid is a roller coaster.”
Before the pandemic, Ms. Anderson practiced martial arts and did without a car, instead walking and taking buses around Ann Arbor, Mich., where she is a medical librarian. Just before contracting Covid-19 in March 2020, she had racked up — oh, she keeps track — 11,409 steps in one day.
The virus caused extreme chills, shortness of breath, a nervous system disorder and such cognitive decline that, for months, Ms. Anderson was unable to read a book.
“I was very sick for a long time, and I never really got better,” she said. On some days, fatigue cut her step count to three digits. Rehabilitation attempts brought progress, then crashes.
The dozens of symptoms collectively known as long Covid, or post-Covid, can sideline anyone who has been infected. But they take a particular toll on some older patients, who may be more prone to certain forms of the illness.
About 11 percent of American adults have developed long Covid after an infection, the Centers for Disease Control and Prevention reported last month, down from the almost 19 percent recorded from June 2022 to June 2023. The figure suggests that some adults are pulling out of the syndrome as time passes.
People over age 60 actually have lower rates of long Covid overall than those aged 30 to 59. That might reflect higher vaccination and booster rates among older Americans, or more protective behavior like masking and avoiding crowds.
“There may also be biologic factors we don’t understand yet,” said Akiko Iwasaki, an immunologist and researcher at Yale School of Medicine. Though knowledge of long Covid has increased, she added, much remains unknown about the illness.
Only recently has Ms. Anderson, 66, regained most cognitive and some physical function; she can manage 3,000 to 4,000 daily steps now. But she wears an N95 mask whenever she goes out and takes a sitting cane so “if I go shopping and run out of steam halfway down the aisle, I can rest.”
And she worries. Her employer has allowed her to continue working remotely, but what if the library starts requiring more than her current one day a week on-site? “I can’t afford to retire,” she said. “It’s very scary.”
The C.D.C. says long Covid begins when symptoms persist a month or more after infection. But the World Health Organization defines long Covid as “the continuation or development of new symptoms” three months after the initial infection, lasting at least two months with no other explanation.
The extensive list of long Covid symptoms includes breathing difficulties, cardiovascular and metabolic diseases, kidney disease, gastrointestinal disorders, cognitive loss, fatigue, muscle pain and weakness and mental health problems.
“There’s almost no organ system long Covid doesn’t touch,” said Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine and senior author of a recent study showing that these symptoms can persist for two years.
“It can affect nearly everyone from children to older adults, across the life span,” he said.
Though long Covid is more likely to afflict people who become severely ill with Covid and require hospitalization — and long Covid symptoms last longer in those patients — it can also follow mild infections. It can arise after the first bout of Covid, or the second or fourth.
While older people are not more prone to long Covid overall, Dr. Al-Aly’s research using large Veterans Affairs databases shows that they are more at risk for four particular clusters of symptoms:
Metabolic disorders, including new-onset diabetes and high cholesterol.
Cardiovascular problems, including heart disease, heart attacks and arrhythmias like atrial fibrillation.
Gastrointestinal problems like diarrhea and constipation, pancreatitis and liver disease.
Strokes, cognitive decline and other neurological symptoms.
Jane Wolgemuth caught Covid in June 2022, along with her husband. “He waltzed through it in two days,” she recalled. “I was in bed for a week.”
They both felt better after taking the oral antiviral Paxlovid. Yet months later, Ms. Wolgemuth, 69, a retired bank employee in Monument, Colo., began noticing cognitive problems, particularly when driving.
“I wasn’t reacting fast enough,” she said. “The brain fog was really taking over.”
After an MRI and other tests came back normal, Ms. Wolgemuth was diagnosed with long Covid. She has been taking supplements and trying light therapy, and she has stretched her walking distance to four miles most days.
She feels more herself, she said, but “it’s remarkable how destructive Covid was.”
Seniors may mistake long Covid for other conditions common at older ages. “They may think, ‘Maybe I’m just aging or I need to adjust my blood pressure medication,’” said Dr. Monica Verduzco-Gutierrez, the chair of rehabilitation medicine at the University of Texas Health Science Center at San Antonio. She has co-authored American Academy of Physical Medicine and Rehabilitation guidance statements for treating long Covid.
Long Covid can also exacerbate the health problems many seniors already contend with. “If they had mild cognitive impairment, do they move into dementia? I’ve seen that happen,” Dr. Verduzco-Gutierrez said. A mild heart condition can become more serious, reducing an older person’s mobility and increasing fall risks.
“The best way in the world to prevent long Covid is to prevent Covid,” Dr. Al-Aly said. As infection rates tick up across the country, masking again in close quarters and eating outdoors at restaurants can help reduce infection.
“Definitely get boosted,” he said. “Vaccination and boosters reduce but don’t eliminate the risk of long Covid” — by 15 percent to 50 percent, studies have found.
“If you’re infected, get tested to be sure it’s Covid, then call a provider as soon as possible and see if you are eligible for Paxlovid,” he said. The antiviral treatment also reduces the risk of long Covid by about 20 percent for those in their 60s, and by about 34 percent for those over 70.
Without longitudinal studies yet, it’s unclear if older people recover from long Covid more slowly. Patients like Ms. Anderson and Ms. Wolgemuth have tried an array of treatments — supplements, electrolytes, compression garments, various physical therapy regimens. “But we don’t have a medicine that has been shown to reverse it,” Dr. Iwasaki said.
Certain rehabilitation approaches have proven to be effective, Dr. Verduzco-Gutierrez pointed out, but there are not enough programs or clinics experienced with long Covid. Some doctors dismiss long Covid symptoms, patients have reported.
That leaves them searching for solutions largely on their own.
“They are rising up together to advocate for research and find treatments,” Dr. Iwasaki said, comparing long Covid patients to the AIDS activists of the 1980s. She co-directs the Yale LISTEN study, which works with long Covid patients to better understand their conditions.
The Biden administration recently announced a new federal office to lead long Covid research, and more clinical trials are beginning. For now, though, many patients rely on groups like Long Covid Support and the Covid-19 Longhauler Advocacy Project, and participate in the Patient-Led Research Collaborative.
Sheila McGrath, 71, who lives in Herndon, Va., recovered from her first Covid infection in February 2020, but has suffered ever since her second bout five months later. Though her health has improved, “I haven’t gotten back to where I was,” she said.
Now she and Ms. Anderson co-host an online chat for Long Covid Support. “Often someone winds up in tears,” Ms. McGrath said. “They’re so frustrated with not being listened to, not being validated, being told it’s psychosomatic, being refused treatment. None of us wants to be sick.”