Jenny Berz has spent the past three years toiling at a slow but vital endeavor: trying to recover from long COVID.
She has been to 27 specialists and had countless MRIs and CT scans since a COVID-19 infection in March 2020 left her with fatigue so extreme she could barely walk for two minutes. But what finally made a difference, Berz says, is what she did for herself: increasing exercise in minuscule increments over a long period, changing her diet, and getting chiropractic and acupuncture treatments.
“I figured out ways to help myself feel better and have basically gotten a lot better,” said Berz, who is 53 and lives in Brookline. That doesn’t mean she has fully recovered — she still has limits on exercise and suffers from frequent migraines. But she’s feeling much improved.
Her experience points to a crucial question: Can people with long COVID recover, in the absence of any proven treatment? Do they return to their previous health, or feel somewhat better, or merely learn to cope with their limitations?
All three scenarios occur, depending on the individual. Doctors say that some long COVID patients, maybe even most, do get better. But advocates for patients say the research so far doesn’t support that notion and assert that tales of recovery distract from the urgent need to find treatments.
Still, optimism prevails among physicians.
“Many people make a full recovery and put this behind them,” said Dr. Jonathan H. Whiteson, a rehabilitation physician who treats long COVID patients at NYU Langone Health. He sees a lot of hope for patients who stick with a “slow, steady approach,” working to improve sleep, nutrition, activity, and mental health.
Dr. Bruce Levy, who heads Brigham and Women’s Hospital’s long COVID clinic and leads the Boston branch of a national RECOVER study of long COVID, said about half the patients at the Brigham clinic get better three to nine months after infection, and a quarter or a third get better in the six months after that. About 15 percent to 20 percent still have symptoms for well over a year after infection.
He cautions that only a fraction of people with long COVID come to his clinic, and they rarely include members of minority groups. So it’s hard to extrapolate the clinic’s experience to the broader community.
But Hannah Davis, a co-founder of the Patient-Led Research Collaborative, a group of long COVID patients, said the talk of recovery does a disservice to those who have been sick for years and aren’t getting better.
Research indicates that many people are not recovering, Davis said. One study found that among people who were sick two months after infection, only 15 percent had recovered one year later, and a third of them had relapsed.
David Rose, a 78-year-old retired nonprofit executive in Lexington, is one of the people the Globe had interviewed in 2020. He said he has seen no improvement since then. His bout with COVID has dampened his once-active retirement years with memory problems and deep fatigue. He always yearns for a nap, but still feels tired after taking one. He’s forgetful and distractible, even as he continues writing a book with two co-authors.
For Julie Craven, a former middle school principal in Cambridge who got COVID in December 2020, it’s been a process of adapting more than recovering. At age 60, she finds her symptoms easier to manage now that she’s retired, but her head still throbs from too much mental activity or stimulus; her body collapses from too much exertion. So she paces herself, avoids driving long distances, wears sound-canceling headphones at the airport and in restaurants, and calms herself with knitting, gardening, and meditation.
Nicole Ricker, a 37-year-old living in Fall River who had COVID-19 twice in 2020, and again in 2022, is back at work as an activities assistant in a nursing home. Ricker had lost her previous job because gastrointestinal issues and numbness in her legs kept her out of work for four and a half months. Those problems have improved, although she still has pains in her hands and wrist, and “these weird vibrations in my legs when I’m at rest.”
And Lauren Nichols, who got sick with COVID-19 in early March 2020, says she’s better in some ways, but worse in others. Her neurological problems — memory loss and brain fog — disappeared after she started taking low-dose naltrexone, an off-label use of a drug normally used to treat addiction. But meanwhile, Nichols, who is 35 and lives in Andover, said her immune system is malfunctioning, attacking healthy tissue while failing to ward off colds and flus.
Among the five, Berz sounded the happiest, feeling she had made good progress.
With guidance from a physical therapist she connected with online, Berz started walking on a treadmill at a 2-mile-per-hour pace for two minutes every other day. She increased her walks by 30 seconds per week, but sometimes she would get dizzy or nauseous and had to cut back to her previous pace.
“I had to relearn how to move,” said Berz. Now she can ride her Peloton for a half hour every other day, and can walk for a mile or two, provided she didn’t bike the day before.
Berz also undertook a restrictive diet, recommended by a doctor online. She paid $3,000 to join a support group of 30 people who went on this diet, which allows only raw vegetables and flaxseed oil for six weeks, plus a gallon of water a day. “It was excruciatingly hard,” Berz said.
At the end of the six weeks, she said, “I felt so much better, mentally, physically. It was just a total reset.” She gradually reintroduced other foods, although she still makes a daily smoothie packed with raw green vegetables.
“I am much more energized. I am much happier,” Berz said. She has resumed working 15 hours a week as a psychologist and became chair of a nonprofit for refugees.
Berz acknowledged that she’s privileged to have the resources and the time for these therapies.
Indeed, any solution for long COVID must address social factors including the lack of access to paid time off, as many people don’t have the option to rest and recover, said Dr. Cheryl Clark, executive director and senior vice president of the Institute for Health Equity Research, Evaluation and Policy of the Massachusetts League of Community Health Centers.
Philip Vo kept returning to work as an MBTA bus driver after getting very sick with COVID-19 in March 2020. He periodically had to take time off because of chest pain, shortness of breath, fatigue, heart palpitations, and fainting – symptoms that only worsened after a second bout of COVID last year.
Last October, at age 58, he went on the MBTA’s disability program, and now takes home a fraction of his former salary. He’s not feeling any better.
“When I get up, I feel tired right away,” he said.
People who developed long COVID after becoming infected early in the pandemic seem to suffer from more prolonged and severe illness, several doctors said. The long-term studies so far necessarily only track cases starting back in 2020. The newer cases, spawned by different variants amid greater immunity, may have a better prognosis.
Tamika Samson is among the newer wave of long COVID patients. The 45-year-old Worcester resident caught COVID this past January, and as breathing difficulties, pain, and fatigue persisted, she sought care at the Covid Recovery Center at Brigham and Women’s.
There she began the process of getting better, tackling each symptom one by one: physical therapy to increase strength, speech therapy to help with word recall, a lung doctor for breathing problems, a psychiatrist for mental health and sleep. And a support group helps her feel less alone.
Samson hasn’t been able to return to her previous job as a therapist. But she holds out hope for a full recovery someday.
“It seems that everything going wrong with me is progressively getting better,” she said. “But it’s very, very slow.”