Holly Gochis, a 54-year-old hospital nurse, contracted her second case of COVID last November and is still sick.
“I can’t even go down one flight of stairs without my heart rate going to 150 and myself becoming short of breath. And that’s today,” says Gochis. “It’s been a year.”
A year of migraines, chest and back pain, muscle aches and deep fatigue. A year out of work with no real exercise. Gochis says she rarely has the energy to see friends and no longer has the strength to lift her grandchildren.
Gochis gets treatment for her wide range of ailments through a post-COVID clinic at Beth Israel Deaconess Medical Center. It’s one of at least seven in Massachusetts. Almost every state has one, but access to them may be hundreds of miles away.
The Critical Illness and COVID-19 Survivorship Program at BIDMC includes physical and occupational therapists, neurologists, lung specialists, a psychiatrist, sleep medicine doctors, mindful breathing teachers, nurses and social workers. A nurse or doctor starts with a head-to-toe exam.
The next step is referrals. These centers, called long COVID or post-COVID clinics help patients in pain, or who feel like they can’t think straight, schedule tests and book appointments with specialists. It can be tough. Many of them had full schedules before COVID).
Dr. Jason Maley, a pulmonologist who directs the BIDMC clinic, says physicians don’t know yet why the effects of COVID fester for some. So the focus in these clinics is on treating each patients’ most debilitating symptoms.
“Most of it — because there’s no single underlying treatment for long COVID — is directed at helping them recover to the best quality of life and return to work,” he says.
Gochis, like many of Maley’s patients, has been out of work since she got sick and is collecting disability.
Still so many unknowns
Through the clinic, Gochis sees a neurologist who runs tests on her nervous system. She’s had cortisone shots to help relieve back pain. A physical therapist helps Gochis manage the racing heart and dizzy spells that come when she sits or lies down and gets up again. And a counselor works with Gochis to manage her anxiety. One driver is the uncertainty about how long she’ll have to live with long COVID. Doctors initially told Gochis that “long” meant about six months.
“Then they were saying a year. Now they’re telling me, wait another six months. So that’ll be 18 months, but let’s see when we get to 18 months,” she says. “They still don’t know. It’s still so new.”
Long COVID is so new that studies to date show quite a range in the percentage of inflicted patients: from 5 to 30 to 50%. Maley and some other physicians say the number of patients whose symptoms continue for more than six months is likely under 10%.
One of the most troubling aspects, for Maley, is that most of his patients are in their 20s, 30s and 40s. These so-called “long-haulers” were active and healthy before contracting COVID.
“People are early in their professional and family lives, and so having these symptoms has just a dramatic impact on their ability to work,” he says. “People with little kids — it’s terrible that they can’t spend the time they want with their kids.”
Early models of long COVID’s economic and social impact are daunting. Dr. Steven Phillips, with a bipartisan public health group, the COVID Collaborative, calls long COVID a looming national health disaster. He estimates 15 million Americans will spend significant time out of work, struggle to find care for long COVID and see higher health care costs when they do.
“It’s going to be perhaps the most economically significant toll that this country will face from COVID,” he says.
Phillips says long COVID clinics may help by reducing the strain on patients. They are, at least, a medical setting where long-haulers will likely be heard and believed, not told their exhaustion, brain fog or trouble breathing is all in their head. Still, Diana Berrent, who started the online long COVID patient network, Survivor Corp, says the clinics are essential but not a solution.
“The number of suicide threats that we are getting in the group is skyrocketing, and people are losing hope,” she says, “because breakthroughs that might cure long COVID are a long way off.”
Pace of long COVID research drains hope
Berrent is increasingly frustrated with the lack of research into the underlying causes of long COVID and treatments, especially in contrast with the pace of vaccine development. Congress appropriated just over $1 billion for long COVID research last December. Projects at many clinics like Maley’s are still waiting for funding.
“That is criminal as far as I’m concerned,” Berrent says. “That money should have gone to researchers months ago.”
Dr. Walter Koroshetz, who directs the National Institutes of Neurological and Stroke Disorders at the NIH, said during a conference earlier this month that most of the projects have received some funding. He said long COVID is clearly an urgent problem.
“If we don’t figure out how to help people now, we could have tens of thousands of people moving into a chronic fatigue syndrome,” Koroshetz said.
Koroshetz mentions chronic fatigue because long COVID shares many symptoms. Maley, Phillips and other physicians say the cause of post-COVID could be similar to problems that continue or re-emerge after Lyme disease, Epstein-Barr virus or mononucleosis. Long COVID research could inform treatment for these other sometimes crippling conditions.
“COVID is a natural experiment to try and understand why some people have chronic trouble after a viral infection,” said Koroshetz. “With the big push now in understanding COVID, that could have a major impact across a whole bunch of different conditions.”
Long or post-COVID clinics are still a work in progress. Clinicians who aren’t affiliated with one are calling for better information sharing about what works for patients and what doesn’t. Advocates say these clinics need to provide dental, vision and hearing therapy, services that are always included in hospital-based care; many don’t. Wait times for an initial evaluation can be weeks or months. And patients in these specialized long COVID programs are disproportionately white, in contrast to the heavier burden of COVID on patients of color.
Getting better, very slowly
Gochis is getting better. She says getting vaccinated helped, but her progress has been slow. Gochis uses a chart to decide which daily activities, like bathing or laundry, she has the energy for.
“Just a couple months ago, I couldn’t even dry my hair,” she says, throwing up her hands in exasperation.
But during a physical therapy appointment, Gochis tells her therapist that she made it through three activities the day before. She left the house for another medical appointment. She went to lay flowers on her father-in-law’s grave. And she celebrated her birthday. The therapist, Heather Broglio, is impressed — and concerned.
“The problem with the COVID patients is that if they do too much they crash,” Broglio explains. “They end up with two or three days where they can’t do anything because their recovery takes a lot longer.”
So Broglio’s goals are to help Gochis stabilize, regain some strength and set a reasonable pace for recovery. Some days Gochis takes a short walk on a treadmill while Broglio watches the monitors, but not today. Today, Gochis will go home, rest and stay put.
Gochis may join one of the studies at the BIDMC clinic, when they receive the funding — if she has the energy. The research may help arrest a disease that has taken much of what Gochis valued in life.
“I miss watching my grandchildren. I miss being out in the world. I miss going to work,” Gochis says. “I can’t do anything that I could do before. It’s devastating.”
This article was originally published on WBUR.org.
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