For nearly three years, research into COVID-19 has been driven by questions we’ve had since the beginning of the pandemic: How does this virus spread, and what does it do to the human body? Scientists were still caught up in these early mysteries when a new one rose to their attention. A growing number of people who had cleared the initial viral infection were left with ongoing, life-altering symptoms. Once the medical establishment recognized long COVID as legitimate (a contentious story itself), it began in earnest to search for cures and treatments that would enable patients to make full recoveries.
A critical issue in the discourse has become apparent over time: We’re missing the mark in the way we talk about recovering from long COVID. The science tells us a full recovery is in no way guaranteed, and that progress can vary wildly among individuals. And yet, most current long COVID research is predicated on the notion that full-on recuperation is possible, said Alison Sbrana, a board member of the queer feminist wellness collective Body Politic.
Just take the name of the RECOVER Initiative, the $1.15 billion research project on long COVID launched by the National Institutes of Health. “It’s an acronym that spells ‘recover,’” Sbrana told The Daily Beast. “That just encompasses the way that our health-care system and our research systems think about medicine and disability.”
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Many people with long COVID—perhaps even a majority of those afflicted, though it’s still too early to say for sure—aren’t going to “get better.” So how should doctors, employers, and families think about long-term, organized care?
There’s no one answer to how this condition fits within existing medical frameworks for chronic and long-term health problems, like post-acute care and rehabilitation centers for patients with strokes, long-term care communities for aging populations, or Centers for Independent Living for people with disabilities. But left unresolved this question has critical ramifications, stretching from the workplace to the overburdening of health systems for years to come.
Protesters march outside the White House to call attention to those suffering from ME/CFS on Sept 19, 2022, in Washington, D.C.
Nathan Posner/Anadolu Agency via Getty ImagesMisconceptions about recovery “set us all back as a society and what it even means to have a healthy life for so many of us,” JD Davids, a strategist at the Network for Long COVID Justice, told The Daily Beast. Davids, who has had multiple complex chronic conditions for over a decade as well as long COVID, said that people who have been chronically ill for years have a different outlook on recovery. “There are ways that our perspectives on what it means to recover have really changed with time,” he added.
Looking for Answers
Ever since the first people began reporting ongoing symptoms following a COVID infection, there’s been a push to study long COVID, an amalgamation of problems that linger well after the acute viral infection has ended. Since there is no test to diagnose it and its symptoms can vary drastically, cases haven’t been easy to quantify. And until recently, most studies could only follow participants for a number of months following an infection, limiting researchers’ ability to parse mid-term symptoms from the hallmarks of a chronic condition.
What we do know is that a good chunk of people who get sick with COVID-19 are at risk for long COVID—being vaccinated may lower their risk, but not eliminate it entirely. There are millions of Americans experiencing symptoms of long COVID today, and recent research suggests that for many of them, these symptoms won’t go away. One, published in October in Nature Communications, found that half of people who had been infected with COVID were not fully recovered (and almost 10 percent had not recovered at all) when surveyed six, 12, and 18 months later. Another, led by McMaster University respirologist Manali Mukherjee and published in September in European Respiratory Journal, found that a quarter of over 100 COVID patients surveyed still experienced coughing, fatigue, or shortness of breath one year after their initial infection.
Mukherjee herself is part of that statistic. She told The Daily Beast that since contracting COVID for the first time in January 2021, she has struggled with bouts of long COVID symptoms that have affected her productivity and lifestyle. In March of this year, she got sick with the virus again, and the symptoms that seemed to be fading came back with a vengeance.
“I’m living on and off with the symptoms that I am researching,” she said.
Recovery from nearly any illness is typically measured as returning to some initial baseline. Mukherjee pointed out that this doesn’t work for long COVID symptoms, which seem to ebb and flow depending on factors like environmental triggers and subsequent viral infection.
“It’s been over two years since the start of COVID. If you’ve aged and gone through an infection as a 30-year-old, would you function the same as when you were 25? Would you ever get back to baseline?” Mukherjee said.
A World of Chronic Illness
Long COVID isn’t alone in that regard. Many other conditions play out over the course of years, including chronic and age-related illnesses. According to experts, the ways our medical system cares for some of these conditions and measures progress or improvement may offer insight into improving long COVID treatment.
Some features of stroke recovery may be relevant to an illness like long COVID, said Vincent Mor, a health services researcher at Brown University. Strokes often leave the people they affect with lingering neurological impairments, long after blood flow to the brain has been restored.
“Even though the outside observer won't notice it, the person themselves will also always notice that they’re not quite as sharp, they’re more frail or fragile, or less resilient,” Mor told The Daily Beast. “In that sense, there’s a commonality to long COVID.”
Recovering from a stroke is a multi-step process, taking place in many different settings before a patient is discharged. An initial inpatient hospital stay to stabilize one’s condition is followed by a post-acute care phase consisting of rehabilitation treatment. Medicare covers a patient’s stay in a skilled nursing facility for up to 100 days, though most patients do not stay the entire length, said David Grabowski, a health-care policy researcher at Harvard Medical School. Facilities’ guidelines for discharging patients may vary, but they often weigh an individual’s progress toward rehabilitation goals with their desire to return to their community—two priorities that are often in conflict.
A protester holds up a placard demanding research into Long COVID.
Martin Pope/SOPA Images/LightRocket via Getty Images“I do think there's a lot of communication around what the goals you have to have for discharge are, and the goals are certainly not that you’re 100 percent back to your prior level of health,” Grabowski told The Daily Beast.
From then on, recovery takes place at home. After six months or so, most stroke patients reach a phase where they are only improving gradually, while a subset do not improve and instead develop a condition called chronic stroke disease. What determines these trajectories—who gets better and who doesn’t—isn’t fully clear, but a person’s transportation, occupation, housing, and family structure all influence their ability to access high-quality, ongoing care.
These social determinants alternately constrain or bolster healing in the months following a stroke, and they have resulted in stark disparities that are rooted into society, Grabowski said.
“You end up with very much a two-tiered system, and I could see something very similar happening with long COVID,” he said. “There’s a group of individuals that have insurance and are able to really withstand a longer term of treatment, whereas others are going to be under real pressure with their families.”
It’s an interesting comparison, but Mor cautioned that despite some apparent similarities, stroke rehabilitation is different from long COVID treatment in significant ways.
“The vast majority [of long COVID patients] are the walking wounded,” he said. “They’re in pain or they’re grieving because they’re no longer what they were, but they’re not bed-bound, and they don’t require hospital care.”
Instead, Mor emphasized that chronic pain and autoimmune conditions like fibromyalgia may share more similarities with long COVID—including in how little organized structure exists for treating these conditions.
Disability care provides another framework for what organized health care for long COVID patients could look like. Centers for Independent Living, founded and operated primarily by people with disabilities, arose out of the civil rights movement and subsequent disability rights activism. The organizations, which receive government funding and comprise about 400 centers nationwide, are designed to offer alternatives to long-term nursing homes and residential care facilities for people with disabilities. What this looks like can vary from place to place, but the overall work rejects traditional approaches of “curing” or “fixing” disabilities to maximize physical and mental functioning, in favor of developing strategies to meet one’s needs and enable independent living. Housing assistance, short-term counseling, and help in acquiring benefits and accommodations can all be part of an individual’s participation in a center, as their value lies in personalized aid.
But Centers for Independent Living are neither a one-size-fits-all remedy for every disability, nor a scalable, individualized solution for the growing number of Americans with long COVID. “Is there something specialized about long COVID care that would dictate institutions totally focused on that care? That's really hard to predict right now,” Grabowski said.
And while the U.S. Department of Health and Human Services has made it clear that long COVID can be a disability, many people don’t realize that they have a disability in the first place, much less that they are legally accorded certain rights and benefits on account of their condition, Sbrana said.
This reality, combined with a lack of incentives for policymakers to change the current health care system to provide reimbursement pathways for long COVID care, means that talk of any organized care communities for the condition will remain just that.
“It’s a utopian vision,” Sbrana said. “My sick friends have talked about it for years even before the pandemic, and now, my new sick friends with long COVID have talked about it. There is no room for it where we are now because it is fundamentally incompatible with capitalism.”
Lilly Downs, 18, pets facility dog Posey at Rocky Mountain Hospital for Children in Denver, Colorado on Aug. 30, 2022. Downs has been in and out of the hospital with long COVID.
Hyoung Chang/The Denver PostTurning Vision to Reality
In the absence of a defined care structure for long-term treatment or improvement, people with long COVID are left to figure out what recovery means to them, on their own terms and in their own lives. Mukherjee, for instance, has adjusted her baseline to avoid comparing herself to a place she can’t return.
“I’m not functioning at my 100 percent, the way I was in 2020, but I am functioning at 75 percent right now, and I consider that to mean I have recovered,” Mukherjee said. “The truth is, I don't think I will ever be able to do exactly whatever I was doing in 2020.”
Rather than focusing on regaining every function lost due to long COVID, emphasis should be placed instead on adapting to a “new normal,” Sbrana said. Long COVID can change a person’s capacity to work a full-time job; the Job Accommodation Network has recommendations on the kinds of accommodations that employees can ask for and are entitled to under the Americans with Disabilities Act. Building in rest breaks, providing ergonomic furniture, and allowing an employee to use noise-canceling headphones are all accommodations that a workplace could make for someone with long COVID.
Instead of aiming for a “full recovery,” Davids thinks about improvement in the symptoms of his chronic conditions in terms of remission, keeping in mind that flare-ups can and will occur. Outside of their jobs, people with chronic illnesses like long COVID may benefit from reassessing their environment—their communities, housing, or eating—with an eye toward how they can improve their quality of life today.
“For many of us, I think it can come down to changing who we’re around,” he said.
Having come of age during the early years of the AIDS epidemic and organized with ACT UP, Davids is no stranger to the health disparities and misconceptions that proliferate about chronic infectious conditions. At this moment, he said, we have a chance to reframe our thinking and focus on helping people with long COVID get better.
“We could be ahead of the curve here,” Davids said. “We don't have to wait 30 years with long COVID to start looking at what the quality of life is for people with long COVID, and what we can do to preserve or improve it.”
