Emma Pouech had recovered from Covid-19.
It was October 2020, and the 34-year-old Lincoln resident had mostly returned to normal life after a six-week bout of respiratory symptoms during the coronavirus lockdown in March. Pouech ran a dog grooming salon in Colchester. A lifelong dancer, she taught movement classes on the side. Both jobs had resumed months earlier with basic precautions.
On Halloween, Pouech was near the end of her hour-long commute home when her hands and feet went numb. Frazzled, she finished the drive and made it up the stairs of her house by muscle memory. She called her fiance, then her doctor. There was no explanation.
“I didn’t feel right,” she recalled in a recent interview. “It felt really heavy, like this weird disconnect with my brain and my body.”
While she waited to feel normal again, Pouech called the salon to let them know she’d be taking a day off. She still hasn’t returned.
Covid, it turned out, had not left her. Pouech has spent the fifteen months since that harrowing drive seeking care for a wide-ranging series of ailments — lung nodules, skin lesions, polyps and even a rare blood disorder — that she and her doctors link to her initial coronavirus infection.
She experiences constant fatigue. Walking to the chicken coop yards away from her house can be exhausting, Pouech said. Her last dance was in 2020.
“My life was taken away from me,” she said.
Pouech is among the estimated millions of people nationwide, and potentially thousands in Vermont, living with long Covid — a catchall designation for an array of symptoms and health conditions that can follow a Covid infection. (The scientific term is “post-acute sequelae of Covid-19,” or PASC, but the patient-coined “long Covid” is broadly seen as more inclusive of patients’ experiences.)
Since the early months of the pandemic, the disease has manifested in a range of forms with varying degrees of severity, making it difficult to diagnose, treat and track.
Several patients told VTDigger they have spent months “weeding out” local doctors who downplayed their symptoms or remained skeptical that chronic health problems traced back to Covid. Those who managed to find sympathetic clinicians said they still serve as their own advocates, coordinating care across a range of specialists and therapists — sometimes numbering in the dozens — while shouldering the administrative burden of health insurance, unemployment and disability claims.
Two years into the pandemic, patients still feel as though they are suffering in silence. Only recently does the public appear to be waking up to the potential effect of mass chronic illness on the workforce and on the nation’s already overburdened medical providers.
Vermont’s rural health system is ill-prepared to treat complex conditions like long Covid, according to experts, due in part to a worsening shortage of primary care doctors and specialists. And while clinical understanding of the condition has advanced in important ways, much about long Covid remains a mystery — including the extent to which more recent surges of infection due to the Delta and Omicron variants could lead to subsequent waves of chronic illness.
“There’s going to be a pandemic of long Covid, for sure, that our country has to deal with effectively,” Vermont Health Commissioner Mark Levine told VTDigger in December 2021.
To patients, the attention paid to their condition so far inspires little confidence about how that pandemic may be addressed.
A ‘mosaic’ of symptoms
A hallmark of long Covid is that it can afflict nearly the entire body. Patients described to VTDigger, among other issues, debilitating and persistent migraines, chronic sleep disruption, spontaneous muscle and joint pain, vertigo, loss of vision, stomachaches and sore throats that last weeks at a time. Patients monitor their heart rates closely, referencing the number in conversation as if they were discussing the weather.
Skin problems come and go. One patient, during a video interview, pressed her hand on her reddened neck to show how it responded like a sunburn. She had not had sun exposure in days, she said.
Taken together, the symptoms contribute to a feeling of disassociation — the bewildering sense of a once-healthy body suddenly behaving in unrecognizable ways.
“They’re odd symptoms, at times — an odd cluster that changes over time. In a sense, it’s mosaic. That makes it difficult, sometimes, for the consumer to explain them,” said Suzanne Lawrence. A physical therapist and clinical research educator at the University of Vermont Medical Center, Lawrence helped organize the hospital’s post-Covid rehabilitation therapy program in February 2021.
Four symptoms appear to be the most common, Lawrence said: brain fog, fatigue, shortness of breath and exercise intolerance. These are also among the hardest to test for, leaving patients at the mercy of their doctor’s trust. Often, that trust is lacking.
“I’ve been laughed at outright, made fun of for everything I say,” said Krista Coombs, who lives in Bennington. “It’s been really hard.”
Coombs is another “first-waver” — slang in the long Covid support community for those who trace their infections to March 2020. Multiple doctors have suggested to Coombs, who is 49, that her condition is simply the onset of menopause. The message, she said, is, “Sucks to be you. There’s nothing we can do.”
On her worst days, simple tasks can be exhausting, Coombs said. Even a conversation with a journalist would take a toll.
“I had to lay down before this. I’m going to have to lay down after,” she said during an hour-long video interview. “You have to manage how much energy, exertion, you have. Whether it’s talking — cognitive — or physical, it’s just this constant, making sure you stay within this window of energy that you have every day.”
Melanie Jannery, a long Covid patient in Burlington, compared her energy level to a gas tank. “It’s like you start with a quarter tank instead of a full tank,” she said. “So what are you going to do with that quarter tank?”
Jannery has to pick and choose which tasks to prioritize, she said. “Do I take a shower before I’m going to read? No. I can’t do that.”
Pouech, the Lincoln resident, said she would hardly be able to explain her current condition to her old self. “I’ve always been super active — like, running circles around everybody, never-sit-down sort of person,” she said. Now, a seated conversation feels like running a marathon.
“When people say you take it a day at a time, it’s really like you take it an hour at a time, or half a day at a time. Because I don’t know how I’m going to feel at four o’clock today,” she said.
Doctors call this pattern post-exertional malaise. While exhaustion can be immediate, other symptoms tend to flare 12 to 48 hours after a physical, emotional or cognitive load, according to Lawrence, the physical therapist. Much of her work involves helping patients understand how to budget their limited energy — a process known as pacing — and how to avoid triggers in the first place.
“We’re trying to give support to what their symptoms are, how they change, and help them begin to link: ‘How do I know if that was a big exertion? Well, I have to measure it for the next couple days to see how my symptoms are,’” Lawrence said. “That’s really hard.”
One important development in long Covid treatment has been understanding that exercise, which is often seen as therapeutic for health conditions, is actually detrimental for many patients. Rather than building endurance, Lawrence said, it can exacerbate symptoms.
That understanding came too late for many first-wavers. Coombs said it was April 2021 — more than a year into her illness — that a doctor first advised her against exercising.
Jannery, who lived with mental health issues for years before the pandemic, said she initially found it counterintuitive to treat a chronic condition by sitting still. “With depression and anxiety, you have to push yourself forward,” she said. “With long Covid, it’s a very different approach. … You actually have to stop doing things.”
‘I still have the pain’
In the way it limits patients’ energy levels, long Covid is similar to myalgic encephalomyelitis, the condition commonly known as chronic fatigue syndrome. Another frequently misunderstood illness that many doctors believe can be triggered by a viral infection, chronic fatigue syndrome took decades to reach widespread recognition in the medical community.
Long Covid, though, appears to present an even wider range of symptoms.
For Mel Symeonides, the migraines took over his life. They came on about 10 days into the March 2020 lockdown, starting with shooting pains in his face accompanied by an “intense pressure” in his head that only got worse.
His sensitivity to sound grew debilitating. “I remember going outside for a walk with my wife, and the sound of the leaves rustling in the wind was so intense that I literally had to go home and just lay in bed,” he said. The sound caused “a physical pain that I would feel throughout my entire head.”
Symeonides, a virologist at the UVM Larner College of Medicine, had no reason to suspect a link to Covid — he had never gotten ill. Only weeks later did he get an antibody test to find out if he had been infected.
“In no universe did I expect the test to come up positive, but it did,” he said. “I was completely shocked. Seeing that is what made me even begin to believe that it had anything to do with Covid.”
A doctor prescribed migraine medication that eventually eased his symptoms, Symeonides said, but it took about eight months to land on the cocktail of prescriptions that now allows him to function.
Without meds, he would still be suffering. “I still have the pain. It’s still there,” Symeonides said. “It’s a very low grade, but it is there.”
Melanie Jannery, the Burlington resident, experienced few severe symptoms until around six months after a mild initial infection. Her breath would suddenly shorten, she said, and she could feel her heart racing. (Many doctors link long Covid to postural orthostatic tachycardia syndrome, or POTS, a blood flow disorder that causes lightheadedness and heart rate spikes when a person moves in certain ways.)
“I’d go for the shortest walk around the block, all flat, and I would start falling asleep, yawning while I was walking,” Jannery said.
Contrary to early reports that receiving the Covid vaccine alleviated symptoms for long Covid patients, Jannery’s condition worsened about two weeks after receiving her second vaccine dose in February 2021. On top of her fatigue and racing heart, her skin reddened, and tinnitus — a chronic ringing in her ears — set in.
Her brain fog worsened. Jannery had attempted to start cycling again, but she stopped after realizing she absentmindedly took a dangerous left turn on North Ave.
She tried to resume an old woodworking hobby, only to find she had lost her precision. “I have a gap in a joint here and a gap in a joint here, but the thing is that I can’t figure out what I did wrong,” she remembered thinking. “I know I did something wrong, but I go back and I can’t do it.”
Over time, Jannery learned to manage her symptoms. She finished a master’s degree in social work in 2021 and hopes to return to field work soon. Acceptance of her condition has been a key step.
“I have a right to a good life,” Jannery said. “I think part of that is meaningful work. And accepting, like, I do have long Covid. And that’s OK.”
Dozens of doctors
The path to even a partial recovery still requires months of navigating a complicated medical bureaucracy, patients said. Because long Covid can attack several different organ systems, treating it requires the help of several different doctors.
Jannery said throughout the course of her illness she has visited, among others, a naturopath, a primary care doctor, multiple cardiologists, a neurologist, a post-Covid clinic, a vascular surgeon, multiple emergency departments, a gastroenterologist, an ophthalmologist, a physical therapist, an occupational therapist, a speech-language pathologist, an audiologist and an ear, nose and throat doctor.
Some of those appointments were hard-won. Jannery never tested positive for Covid on a PCR test, which blocked her from visiting a post-Covid clinic until she received an official diagnosis. A local provider refused to acknowledge that her POTS symptoms could be linked to Covid. One neurology referral has taken nine months to yield an appointment.
Pouech said her provider network stretches across New England. She sees a primary care provider in South Burlington and visits Porter Medical Center in Middlebury for emergency care, but much of her treatment is divided among roughly 20 providers at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.
Pouech was denied by the hospital’s post-Covid clinic, she said. Instead, she travels to Boston every two months to see post-Covid clinicians at Brigham and Women’s Hospital. Still, most tests and specialist appointments there are now booking at least six months out.
“It’s hard as a patient to go, OK, I’ll wait six more months to talk to someone else, or wait six more months for another test,” Pouech said. By then, her status could change, potentially yielding a negative test result for a condition that should have been recorded.
Pouech attributed the delay at the Boston hospital to the current high demand for post-Covid treatment. Yet in Vermont, waiting months for any specialty care is the norm.
State officials last week released the results of a monthslong investigation, spurred by reporting from Seven Days, that revealed wait times for specialty care in Vermont averaged two months, far exceeding those in neighboring states.
Average wait times for certain specialties were even higher — including neurology, a frequent component of post-Covid care, for which wait times in Vermont averaged 114 days. Other specialties common to post-Covid care exceeded the statewide average, including rheumatology, pulmonology, cardiology and gastroenterology.
The report also found disparities among providers. Patients wait an average of 100 days for specialty appointments at the University of Vermont Medical Center, the slowest hospital in the state, officials found. (UVMMC hosts the only post-Covid recovery program in Vermont.)
The shortage of experts in long Covid treatment is leaving rural patients behind, said Anne Sosin, a health equity researcher at Dartmouth College.
“Our specialists who are looking at the emerging evidence on long Covid are concentrated at our academic medical centers here,” Sosin said, referring to UVMMC and Dartmouth-Hitchcock. “And yet, many of our rural patients are reliant on primary care providers and critical access hospitals that don’t have specialists or subspecialists.”
Those general practitioners are also in short supply. Physicians and health care regulators have warned since before the pandemic that the number of primary care doctors in Vermont is dwindling, most acutely in rural areas.
“We are all going to retire or leave the profession, and virtually no one is coming to take our place,” wrote Melissa Volansky, the chief medical officer at Lamoille Health Partners in Morrisville, in a VTDigger commentary last December.
For long Covid patients, a general practitioner that understands the disease and treats it holistically can speed the path to recovery.
“It’s so complex that there’s no way you can treat each of those conditions separately. You need to treat the whole body at one time,” said Daisy Berbeco. The Winooski resident sought care for a range of chronic symptoms for more than a year after her entire household contracted Covid in December 2020.
Berbeco now considers herself “about 90% recovered.” She credits that success to her primary care provider, a family nurse practitioner at a nearby federally qualified health center.
“She knows me,” Berbeco said. “She knows my 51 procedures. She knows that when I went in for my blood draw one day, I did not look like myself. And she said, ‘Would you like to talk to a counselor?’ and I had a therapist that day. That is unheard of.”
Berbeco, who until recently was a senior policy adviser for the Vermont Department of Mental Health, considers herself lucky to have a community health center within walking distance of her home.
Elsewhere in the state, those starting points on the path to recovery are few and far between, she said. “If we want to see more people like me get well, we have to give them access.”
State officials vowed Wednesday to work with hospitals and providers to address long specialist wait times, and the Health and Welfare Committee of the Vermont Senate is hearing testimony on a bill, S.244, that would boost spending on primary care.
For existing patients, those efforts come too late to address chronic lapses in their care. But the population dealing with long Covid is only expected to increase.
The patient pool
The hesitance of many doctors to diagnose long Covid — and the lack of awareness among patients to even suggest that it may be a cause of their chronic health issues — has complicated the public’s understanding of how widespread the condition may be.
Early studies indicated that anywhere from 10% to 30% of infected people were developing long-term symptoms. The true number is likely on the lower end of that range, said Katherine Menson, a pulmonologist at the University of Vermont Medical Center who studies long Covid. But several factors complicate the equation.
Long Covid typically refers to infections that last three months or longer. (Symptoms are most common in the “acute” phase, about two weeks following onset, and symptoms lasting for six to eight weeks are considered “sub-acute.”) That means any attempt to study trends in prevalence is delayed by several months at best.
There remains little research on the effect of the Covid vaccines, Menson said. Early data suggest they reduce the likelihood of developing long Covid after infection by about half. Considering Vermont’s high vaccination rate, that’s a reason for optimism, Menson said. But the remaining risk could still indicate a coming spike in patients, given the high number of infections during the Delta and Omicron surges.
Variants, too, have yet to be studied. Much has been made of the relative mildness of Omicron infections, Menson said, but the likelihood of developing long Covid does not appear to be linked to the severity of a patient’s initial infection. (None of the patients who spoke to VTDigger had initially been hospitalized for Covid, and some had no symptoms at all.)
Plus, it remains unclear how long the illness lasts. Most patients eventually recover from the most severe symptoms — Menson said 12-18 months appears to be the typical duration — but they still don’t return to their pre-Covid baseline. Some bring their symptoms to a manageable level with therapy and medications, and others are approaching the two-year mark still waiting for their condition to improve.
Rather than relying on clinical diagnoses, state researchers are now using surveillance to study the prevalence of long Covid.
Through contact tracing, the Vermont Department of Health last year identified a group of about 2,600 people who tested positive for Covid over a roughly four-month period. With help from the UVM Larner College of Medicine, a research team has been interviewing patients at three-month intervals, hoping to glean trends about who is most susceptible to long Covid and how their symptoms have progressed.
“It’s important to understand long Covid doesn’t have a lab test,” said Jennifer Read, a senior epidemiologist with the health department’s surveillance division, who is working on the study.
The research underway can reveal patterns about long Covid among the population that opted into the study, but it would be impossible to determine statewide prevalence by extrapolating from that data, Read said. “It’s a more elusive outcome than you might expect when you first start thinking about it.”
Surveillance also takes time to reveal trends. The health department study traces infections that originated before the Delta variant emerged. Preliminary data would be available in March at the earliest, Read said.
No such tracking is underway with people who were infected during the Delta and Omicron waves. According to health department data, more than three-fourths of Vermont’s Covid infections to date have occurred since July 2021.
Menson said the hospital’s post-Covid program continues to see new referrals, including patients whose infections began during the Delta wave.
“I fear that with the increase in population we have in Vermont now, the lack of appropriate primary care providers — my fear is that there are going to continue to be patients who are struggling with this and a system that may not necessarily be able to handle it,” she said.
Sosin, the Dartmouth researcher, said the relaxing of mitigation policies during the Delta and Omicron waves could have lasting effects.
“Letting Covid run unchecked through young people, who are at lower risk of severe illness and death, has been shortsighted and misguided,” she said. “We’re still learning about the long-term health outcomes that are associated with Covid. And so I think that we should have been looking at thinking about not only death, but also disability, in our policymaking.”
Long Covid is also poised to compound the racial disparities seen throughout the pandemic, according to Xusana Davis, Vermont’s executive director of racial equity.
“Covid-19 is a mass-disabling event,” Davis wrote in her annual report to the Legislature last month. “The long-term ramifications of this fact are still unknown, but we can expect this to have a disparate racial impact, as many other accessibility issues typically do.”
People of color have statistically been at higher risk of infection because they are more likely to work frontline jobs and face barriers to testing and vaccination. With long Covid, “it also means that we’re more likely, then, to experience those kinds of symptoms, because we were already more likely to get it in the first place,” Davis said last week. “It really is cascading.”
Looking for answers
For now, researchers are working to better understand the condition itself so that more patients can begin receiving appropriate care.
In a separate study, Menson and another UVM pulmonologist, David Kaminsky, are tracking 50 people over the course of two years, recording each patient’s lung capacity and other symptoms at three-month intervals. As lung specialists, they have focused on shortness of breath, conducting tests “to try and identify markers that could suggest why people are feeling so limited,” Menson said.
The study is set to conclude in December, meaning results won’t be available until next year. Menson said that so far, it seems likely that the data will reveal more about what long Covid isn’t than what it is.
Early hypotheses that long Covid was primarily a lung disease, perhaps linked to fibrosis, have not borne out. The condition simply affects too many parts of the body at once.
“I think all physicians respect the fact that no organ works in solitude, and that because long Covid encompasses such a laundry list of symptoms, that this is probably not a single organ itself,” Menson said. “This is really a body processing something from that initial infection.”
Whether the virus is still present in patients’ bodies, or whether it has triggered a lingering autoimmune reaction, remains an open question, said Mel Symeonides, the UVM virologist. Answering it could help determine how to treat long Covid in the future.
If patients are still infected, it’s possible that new antiviral medications, such as the Covid pill Paxlovid, could help, he said. On the other hand, if long Covid proves to be primarily an autoimmune disease, it’s possible that drugs used to treat similar disorders, like lupus or multiple sclerosis, could be repurposed for long Covid patients.
In either case, there are months of research ahead. But the first-wavers who are still living with severe symptoms are coming to terms with the fact that there appears to be no quick fix.
“I’m more hopeful now that I’m learning more,” said Pouech. “But I’m also going, so what’s my timeline?
“If, on a cellular level, I’ve damaged my body and my muscles and my vascular system and my lungs, I don’t think I’m going to be better tomorrow. It might not be in a couple weeks. It might not be in a couple months,” she said. “Can I hope for a couple of years? Like, what am I looking at? I have no idea.”
‘They just don’t understand’
While Symeonides does not study long Covid at UVM, he is a member of the Patient-Led Research Collaborative. The national volunteer consortium has been at the forefront of long Covid research, publishing the first two major studies of the disease based on surveys of thousands of patients.
Patient groups were also the driving force behind the recognition of long Covid by the Centers for Disease Control and Prevention and World Health Organization, Symeonides said, as well as the Biden administration’s July 2021 designation of long Covid as a disability under federal civil rights laws.
Krista Coombs, in Bennington, advocates for patients like herself through the Covid-19 Longhauler Advocacy Project. She has met with the staff of Vermont’s congressional delegates, urging them to advance a federal bill to establish a national long Covid patient registry and fund new research and education initiatives.
The patients who spoke to VTDigger have also all participated in online long Covid support groups, including one that meets monthly through UVMMC. Menson and Kaminsky, the UVM pulmonologists, and Lawrence, the physical therapist, regularly attend the hospital’s group to bring a clinical perspective. But the main goal, Menson said, is to help patients feel less alone.
“It’s the only place where, I think, they feel like they can meet other people who are going through exactly what they’re going through and really end that feeling of isolation,” she said.
Symeonides said that early in his illness, support groups were the only place where his symptoms were validated. “Certain things, you mention them, and somebody is like, ‘Oh my gosh. I felt that same thing, and I had never felt that before in my life.’”
Pouech said the dismissiveness about her condition extends beyond the medical community — everyday interactions with friends and neighbors still reveal skepticism.
“Most day-to-day people I run into, or try to explain what’s happening, or try to explain why I’m not working, or why I’m not dancing, or why I’m not just able to push through it like I always do — they just don’t understand,” she said. “I can say I’m fatigued till I’m blue in the face, and they’re still going to look at me and go, ‘But you look okay.’ And they just won’t understand.”
Coombs said whether it’s through legislation, peer support or public education, she just wants others to know that the disease is real.
“I just didn’t want anyone else to have to do this without support,” she said. “I can’t just sit here holding on to all this. Somehow I have to have some sort of purpose. I have to put this out there to see, have people understand — this is a possibility. This can happen.”
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