Authors: Elizabeth Cooney Feb. 8, 2022 STAT
How long does long Covid last? And what does it mean to achieve full recovery?
If you ask Joni White, she’ll tell you she just wants to feel like herself again — or something close to it. And she’s almost there.
Retired from federal law enforcement, White now describes herself as a glass artist but she’s been out of her studio for more than a year. On New Year’s Eve 2020, Covid-19 hit her so hard she thought she might die. Her infected but asymptomatic sister cared for her for three weeks in a house on the Outer Banks in North Carolina until her crushing headaches, chest tightness, and brain fog eased. But back home in Hillsborough, N.C., White’s headaches and brain fog were still there in April, along with frustration and depression at not being able to carry out what had been ordinary tasks, much less fusing glass into art.
She couldn’t do the finances. She’d forget where she was going. She struggled to figure out how to put up a ramp outside her house for her grandkids and dogs. “It was simple, simple math, but I sat here for two hours. I just couldn’t get it,” White told STAT. “The simplest things would make your brain get kind of crazy.”
White’s story is one that’s being told at long Covid clinics across the country. Some people are improving, clinic doctors told STAT, ahead of readouts from the multitude of studies launched by National Institutes of Health and others to follow the trajectory of the illness.
“The good news is, even after six months, we’ve really had the wonderful opportunity to watch people get better,” W. Michael Brode, medical director of the post-COVID program at UT Health Austin in Austin, Texas, said, “although I certainly have seen my share of people who got sick in March and April of 2020 and they’re better, but not close to 100%.”
Back in August 2021, White was heartened just to be believed when her intake interviewer accepted her into the University of North Carolina’s COVID Recovery Clinic in Chapel Hill. After scoring her first appointments in October, White learned strategies to improve her executive function, sharpen her memory, and recover from other casualties of what she’s learned to think of as a traumatic brain injury. Now she’s ready to go back to the glass studio and finish the driftwood glass sculpture waiting there, building on the progress she has made.
“I’ve finally got the excitement back,” she said last week, more than a year after she tested positive for Covid-19. “I’m going to get back out there, and I’m chomping at the bit. I’ve got a lot of unfinished projects I’m ready to finish so I can start new ones.”
Long Covid clinics started opening their doors in 2020, before there was an agreed-upon definition of the condition but inspired by patient advocacy groups. They now number at least 44 centers in 48 states. Doctors and researchers give credit to organizations such as Survivor Corps and the Body Politic Covid-19 Support Group for helping to mobilize a response to post-Covid impairments that were dismissed by clinicians.
It’s now recognized by the National Institutes of Health as PASC, which stands for post-acute sequelae of SARS-CoV-2 infection and covers an array of symptoms that persist for several weeks, months, and potentially years after an infection has been diagnosed. Symptoms run the gamut through both mental and physical health, spanning the neurologic and psychiatric, the cardiovascular and pulmonary, the gastrointestinal and musculoskeletal. Within each organ system, severity spans a spectrum. In neurology, that could range from headache to encephalopathy to muscle weakness to “brain fog” that looks like dementia or chemo brain: memory gaps, trouble finding words, inability to do simple math, such as calculating a tip, or worse.
People can suffer months-long impairment even if their infection was never serious enough to require hospitalization. They’re short of breath, unable to sleep, to return to work, to live what used to be their normal life.
A study conducted by the Centers for Disease Control and Prevention and published Friday in JAMA Network Open estimates roughly 1 in 10 people will develop long Covid symptoms more than a month after infection, with more severe Covid-19 raising that likelihood. That’s lower than an estimate from Oxford University that puts the toll at more than 1 in 3 people. With the staggering total of Covid cases in the U.S. since the pandemic began, even that more conservative number translates to more than 7 million people with long Covid.
Although there’s now general agreement on a broad case definition of long Covid, that comes in the absence of a known cause or way to predict who’ll develop long Covid, much less how to prevent it. There is also little in the way of data to gauge how many people improve, and one clinic director said patient care leaves little time for the rigorous research he’d like to do.
The pandemic in general has made SARS-CoV-2 the most studied pathogen in history, surpassing the microbe that causes tuberculosis, infectious diseases specialist Nahid Bhadelia of Boston University said on a recent Infectious Diseases Society of America call with reporters, but few solutions have emerged so far to solve its long-lasting effects. And the people who go to long Covid clinics do not necessarily represent the racial and ethnic diversity of populations infected with the virus and experiencing its long-term damage, she also noted.
In the meantime, long Covid clinics approach their patients as people who need multidisciplinary care for their symptoms, much of it drawing on rehabilitation medicine.
Before the pandemic, John Baratta, founder and co-director of the UNC clinic where White is treated during video and in-person visits, focused primarily on neuro-rehabilitation, caring for people after strokes and brain injuries. Meeting long Covid patients where they are means evaluating their symptoms and understanding what their pre-Covid lives were like in order to get them back as close to that as possible.
An older person who had medical problems before being hospitalized for Covid might need a more traditional rehabilitation course, Baratta said. Previously healthy younger people who get knocked down by the virus and can’t regain their prior state of health, physically or cognitively, might have different issues.
“They don’t need a cane or walker, but they are as impaired or more impaired in their daily living than someone who might be older and who is hospitalized,” Baratta told STAT. “More than half of the patients who we see who were previously working before Covid are unable to work or have reduced schedules because of their symptoms.”
When Benjamin Abramoff, director of the University of Pennsylvania Post-COVID Assessment and Recovery Clinic, first started seeing long Covid patients in June 2020, he brought his experience in spinal cord injury medicine and acute rehabilitation.
“We see patients who are going to work who have persistent loss of smell and they can’t eat like they’re used to, and that’s going to be very bothersome and distressing. And then we have patients who are so impaired with fatigue that they can’t get out of bed,” he said. “What we’ve learned treating patients with neurologic disability is that those are total body problems. And oftentimes with patients with long Covid, there’s a lot of different elements at play.”
Some people have to relearn how to breathe if the weeks they spent trying to tamp down Covid’s raging coughs have made them shallow breathers. Some people must learn how to think again, with cognitive exercises to break down problems into more manageable pieces. White learned at the UNC clinic that she can no longer be the multitasker she once was. Instead, she tackles one task at a time for 10 minutes, takes a break for 10 minutes, and then resumes. She writes down driving directions to the clinic in Raleigh, even though “it’s two turns.”
Explanations for ‘long Covid’ remain elusive. For now, believing patients and treating symptoms is the best doctors can do
Smell therapy reintroduces scents to people who have lost the ability to recognize them. Stimulants used to treat ADHD can help with mental focus, and sleep therapy can lessen the numbing fatigue that saps mental and physical strength. Blood work should also rule out anemia, vitamin deficiency, or thyroid problems as factors in fatigue. Clinicians also screen for sleep apnea or depression to find solutions.
Then there are the autonomic disorders showing up in long Covid, when nerves that should regulate nonvoluntary body functions such as heart rate, blood pressure, and sweating don’t work properly. Neurologist Svetlana Blitshteyn, director and founder of the Dysautonomia Clinic at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences, said the scientific community historically hasn’t addressed post-viral syndromes after flu, mononucleosis, enterovirus, or Lyme infections, all of which can prompt autonomic disorders.
Bhadelia of Boston University made a similar point. “It would not be unique for SARS-CoV-2 to be able to cause something that is a post-viral setup because we’ve seen that in other infectious diseases as well, most recently in another emerging infectious disease: the Ebola virus disease,” she said. “We also know that multiple other viruses that might cause post-viral chronic fatigue syndrome or myalgic encephalomyelitis.”