Workers find they're able to make it through a whole day again. Parents trust themselves with their own children. The brain fog descends less often, normal smells start to return, and racing hearts get more rest.
Although COVID-19 may feel endless when symptoms linger a month or more after an infection, many people are back to feeling like themselves within about three months. Many more have recovered at six months, said Ravi Ganesh, who treats long-haul COVID-19 at the Mayo Clinic in Rochester, Minnesota.
Everyone's path is different, though.
“There are outliers. We have a few patients who’ve been sick for close to a year, and they’re not improving," he said. "But they are the minority, so there’s a lot of hope for people.”
Researchers around the world are trying to bring that hope to more people, by better understanding what’s causing long-haul symptoms and identifying safe, effective treatments that will help them recover faster.
This week, the National Institutes of Health announced a $470 million study on the long-term effects of COVID-19, to include 30,000 to 40,000 volunteers, half of them children. A study of this size usually would take two to four years to organize, but the government pulled it together in record time.
"We need to do everything we can to get answers," NIH director Dr. Francis Collins said at a news conference announcing the research.
Researchers first have to understand long-haul COVID-19 before they can begin to explore treatments, he said. It's not clear whether the condition is triggered by a persistent viral infection, a misfiring of the immune system or a disruption of metabolism.
Figuring out the cause will help determine the solutions, Collins said.
It won’t be easy, in part because long-haul COVID-19 is so new – the long-term consequences of a disease that didn’t even have a name until about 18 months ago. Symptoms are wide-ranging, and trajectories are varied.
Kidney damage can appear even in some who didn’t realize they’d caught COVID-19, a study published this month found. Others’ lungs or hearts were weakened from weeks of fighting the infection. And for many people, problems that don’t show up on any scan or blood test can leave them feeling stupid, breathless and emotionally and physically drained.
There are a few common threads. The passage of time, if not healing all wounds, seems to make a big difference, Ganesh and others said.
Many find help – or at least solace – from doctors, friends and support groups.
Self-advocacy seems essential to recovery. Over the summer, the USA TODAY Network spoke with dozens of long-haul patients who regularly referred to the work they had to do to ensure their own care: pushing to confirm their infection, learning how to exercise to fight the exhaustion, convincing doctors to provide them oxygen at home – or even just to believe their problems are real.
For a condition that’s as little understood as long-haul COVID-19, very few treatments have solid data behind them. Doctors treat the symptoms and use diseases they understand a little better to try to guide care.
Caregivers don’t have much science to go on, said Dr. Peter Staats, who runs a long-hauler clinic at Johns Hopkins University in Baltimore.
"Doctors need to be thinking about what they can do for their patients sitting in front of them today, while (we) continue to advocate for double-blind, randomized, controlled trials to really prove out the efficacy over time,” he said.
There’s so little understanding of what causes the enduring disease it can be hard to even tell if a treatment is working, said Zijian Chen, an endocrinologist and medical director of the Center for Post-COVID Care at the Icahn School of Medicine at Mount Sinai in New York.
In a way, it’s an advantage that a huge number of people are affected by long-haul COVID-19 – perhaps as many as 12 million in the USA.
The diversity of symptoms means researchers will need to study lots of people to understand the problem and find solutions.
“If you have one cause of a problem and 1,000 people to study, you are likely to get a common answer,” said Dr. Ed Liu, president and CEO of the Jackson Laboratory, a nonprofit biomedical research institution.
With hundreds of possible symptoms, it may take hundreds of thousands of people, if not more, to find definitive answers, he said. The Jackson Laboratory is breeding mice with a variety of genetic and immunologic differences to represent the diversity of problems that can follow COVID-19.
Unfortunately, for people who are struggling now, all this well-intentioned research takes time.
“I wish I could give more hope to the folks that already have it,” said Megan Ranney, an emergency physician and researcher at Brown University. “The biggest thing I can say is that a lot of people are working on it and that their voices matter and are essential for forward progress.”
‘I didn’t think I would make it’
Margot Gage Witvliet, her husband and school-age daughters got sick with COVID-19 in early March 2020 after a flight home to Beaumont, Texas. The others recovered quickly, but Gage Witvliet, 39, suffered severe respiratory problems, her blood oxygen level dropping from the normal upper-90s to as low as 60.
The breathlessness was the worst. “I felt like I was being suffocated all the time,” Gage Witvliet said. “It’s a really bad feeling.”
Her two hospital stays convinced her that supplemental oxygen helped, so after some lobbying, her doctor wrote her a prescription. Despite her generous health insurance, she had to pay $4,000 out of pocket for the breathing machine, hoping for reimbursement. “I wouldn’t have gotten oxygen at home if I was poor,” she said.
Gage Witvliet, an assistant professor of sociology at Lamar University, said she wasn’t impressed by the treatment she received or how much she had to advocate for herself. When she first sought hospital care for her breathing problems, her blood was tested for illegal drugs. Only after the tests came back negative, she said, was she treated with compassion.
“Everybody gets the short end of the stick when it comes to health care in this country,” Gage Witvliet said. “But I think that because of being a woman, it’s even worse. Because of being a woman of color, it gets even worse.”
An assistant professor at Lamar University, Gage Witvliet was able to teach online, rest over the summer of 2020, then work at her own pace on a special project in the fall and spring.
Having a supportive family made a huge difference, she said. It's a sentiment of many people recovering from long-haul COVID-19.
“It’s really like you need to be in a cocoon,” she said. “Everything around you needs to be great. No stressing, just a nice, easy flow.”
Finally, the cloud of long-haul COVID-19 has begun to lift. Gage Witvliet can read for an hour without getting a migraine, enjoy the outdoors with her daughters, 6 and 9, and not feel trapped in her home anymore – though she recently had a 48-hour relapse.
“I finally feel like I’m going to beat it,” she said. “This is the first time since getting sick that I really feel like I’ll beat it.”
Figuring out the ‘smoking gun’
The best way to prevent long-haul COVID-19 is to not get COVID-19 in the first place.
Reducing the viral load of an exposure – by being vaccinated, masked or distanced from an infected person – should reduce the likelihood of long-haul, experts said.
Although there’s evidence that even vaccinated people can get long-haul COVID-19, a study published in late August in The Lancet Infectious Diseases found full vaccination reduced people’s risk of long-lasting symptoms by 50%.
Scientists are also studying monoclonal antibodies – treatments that reduce the risk of serious infection – hoping they might cut down on long-haul, too.
Even the basics about long-haul COVID-19 are confusing.
It would make biological sense for people who struggled more with their initial infection to be at higher risk, but that’s not what the data shows, said Gregory Szeto, an investigator in experimental immunology at the Allen Institute for Immunology in Seattle.
“It doesn’t appear that it’s selectively affecting people with more severe disease,” he said. “Long COVID is a concern that should make everybody more cautious even about ‘mild’ infection.”
People with long-haul seem to differ from non-long-haulers in the way their immune system responds to infection, said Juliana McElrath, an infectious disease expert at the Fred Hutchinson Cancer Research Center. She, Szeto and other colleagues are studying these differences.
McElrath said whatever they learn studying long-haul COVID-19 patients may shed light on ailments such as chronic fatigue syndrome, chronic Lyme disease and some auto-immune problems that might be triggered by hits to the immune system.
In the case of COVID-19, unlike other unidentified causes of these symptoms, “we know when it starts, we know what the pathogen is, so I think it’s something we really can go after,” McElrath said.
There won’t be one single answer to such complex health problems, Szeto said.
“It’s really on us as a research community,” he said, “to figure out what's the smoking gun and for which people.”
Moving toward treatment
GETTING VACCINATED seems to help some people with longer-term symptoms – though it’s impossible to predict who will benefit and who might suffer more setbacks after vaccination.
In a survey, the advocacy group SurvivorCorps found that of 1,330 long-haul sufferers who had received two shots, 44% reported no change in their symptoms, 42% reported some improvement and 14% said they felt worse. Larger studies are underway.
Researchers are also studying whether vitamin D taken before infection or right after can help prevent long-term symptoms.
“It desperately needs study,” said Dr. David Meltzer, who leads a trial at the University of Chicago that is looking for volunteers. It’s “a very plausible story" that getting sufficient or even extra vitamin D could help reduce long-haul symptoms, he said, but it hasn’t been proved.
Ganesh at Mayo recommends people look for approaches that make scientific sense. Though there’s a logic behind trying vitamin D for long-haul COVID-19, he said, there’s little behind many of the other supplements touted.
Promoting a healthy diet, exercise, stress reduction and good sleep “is completely in line with what we do,” he said. “A lot of people are nervous about doing things that don’t have data. … (Doctors) are invested in a very evidence-based world.”
Mental health issues need more focus, said Chen of Mount Sinai. About half the people in his clinic report depression and anxiety as part of their long-haul COVID-19.
“The patients we’re seeing now, they’re more willing to accept the fact that their mental well-being is affected by these symptoms and they’re more willing to accept treatment,” he said.
Dr. Zeina Chemali, a neuropsychiatrist at Massachusetts General Hospital in Boston, said she worries that long-haulers with residual cognitive difficulties, depression and anxiety and sleep problems could be at higher risk for dementia later in life.
She and her colleagues are enrolling long-haul patients in a study to see whether these symptoms, if they continue for a year or two, have any effect on long-term brain health.
She mostly recommends treatments to address specific symptoms such as melatonin for sleep issues, a stimulant to help with fatigue, antidepressants for depression and anxiety, occupational therapy to recover lost functions and electrical stimulation to treat brain fog, attention problems and executive dysfunction.
About half of her patients bounce back fairly quickly after she treats their symptoms, she said, and half struggle for longer.
Chemali has a quick rule of thumb for the time it takes to recover from any insult to the brain, whether it be concussion or COVID-19: “You have to give it a year and a season.”
Eight days after she started suffering from COVID-19, Jessica Cohen realized she was in trouble.
Instead of recovering from her flu-like symptoms, the 37-year-old doctor and mother of two felt lightheaded and on the verge of collapse every time she stood up. A simple trip to the bathroom sent her heart racing as if she’d just broken the tape on one of the half-marathons she’d run. The fatigue was unbearable.
A few weeks into this misery, as she sat up and felt the familiar swoon, she flashed back to her medical training and had an idea.
All her symptoms might add up to something she’d studied called POTS – postural orthostatic tachycardia syndrome – which could happen to people when their nervous system was thrown out of whack.
Other infections could cause it. No one knew if COVID-19 could, but Cohen didn’t have much to lose by pursuing the treatment, which included low-exertion exercise, compression socks and adding more salt to her diet to improve blood flow and volume.
She followed the protocol, and slowly – very slowly – signs of progress began to edge out the setbacks and frustrations. It took her 15 months to complete the eight-month-long POTS treatment regimen.
Cohen can confidently care for her 4-year-old son and 2-year-old daughter again, keep up with her full-time job as a hospitalist and work out the 90-plus minutes a day she needs to minimize her symptoms.
“People don’t realize how debilitating (POTS) is,” she said. “I’m incredibly lucky.”
Problems such as POTS seem to occur among a subset of long-haul patients. Ganesh at the Mayo Clinic estimates that about 15% of his patients may have dysautonomia, a broader category that includes POTS.
Prescriptions are not the answer for patients with dysautonomia, said Amy Kontorovich, a genetic cardiologist at Mount Sinai and former colleague who counseled Cohen through her recovery. Kontorovich, who specializes in treating dysautonomia at Mount Sinai, emphasizes physical therapy and aerobic conditioning.
“There is so much power in validation and acknowledgment that can be a lot more impactful than a pill," she said. “People need to have hope that there’s a chance for them to get back on track and begin to see themselves as they were before all of this."
Recovering body and soul
When Charles Harkala of Auburndale, Florida, was discharged from a hospital on Nov. 30, 2020, he thought the worst was over.
The hospice chaplain, 70, had spent nearly a fortnight fighting COVID-19, and was almost put on ventilator.
“The first couple of weeks after I got out were two of the toughest weeks I’ve ever lived,” he said. The brain fog “was like a black hole in the middle of who I am.”
As December wore on, he continued to feel poorly. His weight plunged. He learned later he’d developed post-traumatic stress disorder.
As 2020 drew to a close, Harkala, with a referral from his primary care physician, secured a coveted slot with Kathleen Haggerty, an internal medicine practitioner with the Watson Clinic in Lakeland, Florida.
Haggerty took an early interest in the developing condition of long-haulers.
“I began to realize that somebody was going to need to take care of these people,” Haggerty said. “That person could be me.”
By summer’s end, she began drafting protocols for her post-COVID-19 clinic, seeking input from Penn Medicine in Philadelphia and Mount Sinai in New York, which had similar initiatives in the works. Her clinic launched last September and has served more than 250 people.
Harkala’s first appointment with Haggerty was an hour long, he said. She conducted a thorough, thoughtful exam and ordered a slew of tests and collected 11 vials of blood.
He found Haggerty’s prowess as a student of long-haul COVID-19 affirming.
“It gives you hope when you don’t have any,” he said.
Haggerty ordered a tailored treatment regime that included a multivitamin cocktail to boost his immune system. Harkala made so much progress by his one-month follow-up – about two months after his initial infection – he declared her “one of my heroes.”
At her suggestion, he got vaccinated early this year. He continued to improve and is “restored to my full health.” Harkala knows he’s among the lucky ones; he has close friends who have endured months of brain fog and others facing heart problems.
As a hospice chaplain, he credits his faith along with Haggerty for pulling him through. The virus attacks body and soul, he said, urging people to strengthen both as the pandemic lingers.
“If I can help one person not get COVID, or one person have hope that is a long-termer, then it’s worth it for me,” he said. “It can last for a while but … there is light at the end of the tunnel.”
Contact Weintraub at email@example.com
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