3 years into the pandemic, Vermonters are still getting — and struggling with — long Covid

For Melissa West, it was a racing heart and numbness in her shins. For Ylan Roy and Matthew LeFluer, an extreme shortness of breath and unrelenting fatigue. For Mel Symeonides, frequent and intense migraine headaches.

Those were the first inklings that the lives of these four Vermonters would be upended by a bout with the Covid-19 virus. What followed has been quite different for each of them, showing how varied the course of symptoms of post-acute Covid, generally called long Covid, can be. 

For them and hundreds — or likely thousands — of other people in the state still in the grip of long Covid, the pandemic continues, despite the end of the global and federal public health emergencies on Thursday. 

“I find it frustrating when people say it’s just a cold, or it’s just the flu. I’ve never had a cold do this to me,” said West, 49, of Manchester, who had Covid-19 twice. “It’s not a cold to everybody.”

Surveys suggest the likelihood of experiencing post-Covid symptoms for more than 12 weeks after an infection has been declining in the U.S. But still, more than 10% of people who have been sick from the virus experience long Covid, and a smaller percentage, perhaps 1% to 2%, appear to go on to have severe impacts that significantly affect their daily routine. 

West’s strange symptoms bothered her but were not debilitating following her first illness in January 2021. They became much worse after she caught Covid-19 a second time in December 2022. 

A few weeks later, getting up in the morning felt like “walking on glass,” with excruciating pain on both sides of her body, “literally my hips down to the tips of my toes,” West said. It hurt terribly even to press the foot pedal to accelerate in her car. 

Two rounds of steroid injections and heart medications helped, but she is no longer able to hike or garden and limits socializing to immediate family and people she knows well. 

“The bottom line for me is that I am on so many medications,” West said. “I have to carry pill boxes and have an alarm set on my phone to take medication throughout the day just to function.”

Poorly understood

The region’s health care providers, both hospital-based and independent, continue to get new patients like West with this poorly understood condition. 

The Post-Acute Covid Syndrome Clinic at Dartmouth Hitchcock Medical Center has treated more than 600 patients since it launched in April 2021. Around 1,500 referrals have been made from all across Vermont and New Hampshire, according to clinic leader Dr. Jeffrey Parsonnet, an infectious disease specialist.

The most common symptoms are not related to difficulty breathing, as some might expect, but systemic pain and body aches, insomnia, depression and anxiety, he said. Tests show that even symptoms related to breathing and heartbeat appear to stem from a neurological problem, though what kind is still unclear.

Part of the mystery of long Covid is that so far no specific biological signal for it has been found. 

“Nobody knows what causes long Covid, whether this is just an infection or this is an immunologic response of some kind,” Parsonnet said. 

Blood tests, brain scans and X-rays all come up normal. 

“Everything’s normal. So that’s hard for patients, and it's hard for people around patients because there is nothing objective to address,” he said. 

The people they see now with new diagnoses have mostly been immunized and never got very ill. 

“I think in the early days of long Covid, one of the ‘risk factors’ was felt to be severe initial illness,” Parsonnet said. “We’re seeing almost exclusively people with mild illness or sometimes they felt pretty sick but not to the point of hospitalization.” 

The Covid-19 Recovery Program at the University of Vermont Medical Center has worked with around 200 patients since it started in October 2020, said co-founder Dr. David Kaminsky, a pulmonologist. Although the program facilitates an online monthly support group, it is not designed to directly treat patients but rather to advise primary care providers, he said. 

What is clear to both doctors is that cases are still coming, and some of their earliest patients are still struggling.

“I still don’t think society understands how big a problem it’s going to be,” Kaminsky said. 

Researchers don’t know whether the decline in the percentage of people who experience long Covid after getting sick with the virus in the U.S. is due to vaccinations or a change in the makeup of the virus. But 10% is still a large number. 

And, although community levels of Covid-19 continue to be low, cases and outbreaks of the virus are still reported every week, and those likely only represent a fraction of the illness actually occurring.

Kaminsky said he understands that people are tired of planning their lives around Covid. The majority of Vermonters may believe they are not at risk because they have already been exposed to the virus multiple times.

“All I can say is, well, you’re lucky then, if you don’t get long Covid. Thank your lucky stars,” Kaminsky said, adding that he continues to wear a mask in public places.

‘Feeling invisible’

At this threshold moment, Vermonters living with long Covid have messages to share. 

Overall, they do not want the world to forget that they are here, living among their fellow Vermonters, struggling with a strange new chronic illness. They find support from each other, mostly online, and from family and friends. 

But they also want public recognition and accommodation. 

Parsonnet and Kaminsky said they have seen an increasing number of primary care providers become aware of long Covid and who are more comfortable providing a referral. But some patients have found that accessing available treatments remains a challenge, particularly for those in already marginalized groups.

Roy, a 54-year-old woman who lives in Williston, said it took her almost six months and visits to multiple doctors to find one who listened to all her symptoms — which along with fatigue and trouble breathing included extreme heart rates, insomnia, and swelling in her veins and stomach — and to put the pieces together.  

“(He) just looked at me and was just, ‘yeah, that’s textbook long Covid,’” she said. “I pretty much cried tears of relief, joy and grief because, you know, finally, finally.”

Roy, who is Hispanic, attributes this in part to provider biases. She urged people who think they may be suffering from the condition to keep advocating for themselves.

“If, for whatever reason, you’re brown-skinned, you're old or just crying a lot or, you know, you smell like cigarettes, for whatever reason that people give for bias in the world, you are not going to be believed, and they’re going to say you have a mental health issue,” Roy said.

LeFluer, 34, of Alburgh, said being both a person of color and autistic has made it more difficult for him to communicate to regular care providers the full extent of his post-acute Covid symptoms, primarily fatigue and a worsening of his asthma. 

“For me, telling (someone) who doesn’t have autism, who’s just the regular, normal, normal physician about this, it gets very, very complex and it gets very, very missed,” he said.

Dr. Mel Houser, who is autistic and started a Montpelier-based medical practice focused on neurodiverse people during the pandemic, said they estimate that 70% of the clinic’s patients suffer from long Covid or a similar “neuro-immune” condition.

People who are autistic or have attention deficit disorder appear to be more susceptible to those conditions, they said. But interacting with the health care system as it is currently structured is challenging because of how their brains work, and many have had bad experiences.

“You walk into a health care experience, and you’re expecting to be dismissed and invalidated because that’s, that’s your lived experience,” Houser said.

For Houser and Roy, the removal of masking requirements in health care settings last month has made these places even more unwelcoming. 

Throughout the pandemic, Roy continued working in early childhood education, as she had for decades, and did not get sick with Covid-19 until last summer. Since then, she has experienced around 50 unique and shifting symptoms and only began to feel some relief after she took time off work in winter. 

She desperately wants to get better enough to return, but seeking medical treatment may expose her to Covid again. 

“We all feel invisible. We feel like we’re just hanging out alone, like we don’t exist anymore,” Roy said. 

Risk and hope

Symeonides, 38, a virologist at the University of Vermont Larner College of Medicine, is a long-term long-hauler. He began experiencing frequent and intense migraines soon after contracting the virus at the beginning of the pandemic.

He understands that people are making personal risk calculations for different choices every moment of the day. Still, he’s not sure everyone understands that a minor illness can still become a debilitating chronic condition even if one is vaccinated or has already beat Covid-19 several times. 

“I would say the risk (of getting long Covid) is much lower today, but it's still very, very high compared to where we were four years ago,” he said.

Symeonides and his wife, Carrie Pratt, both participated in the UVM Medical Center support group in the year following his diagnosis. He was referred to a neurologist and is on medication for migraines that reduces their intensity and frequency. 

Since 2021, he has been back in the lab full time. He and Pratt, an admissions officer at the university, were recently able to travel back to Cypress to visit his family. But Symeonides knows from hard experience that he still has to monitor his activity level carefully or can end up in terrible pain again. 

“I don’t feel like under all this medication that there is improvement going on,” he said. 

Symeonides and Pratt were both reinfected last summer and took a five-day course of Paxlovid. An occasional side effect of the medication — a bitter taste in the mouth — made it an unpleasant week for both of them, but they recovered and his migraines did not worsen.

They say they are looking forward to seeing results of the clinical trials that are testing whether a longer or ongoing course of Paxlovid, or another similar antiviral, could be a treatment for long Covid.

That research is part of a $1.15 billion federal investment to better understand long Covid directed by the National Institutes of Health. Those efforts are what give him hope. 

“There’s a lot of really big-name scientists with big labs and a lot of funding, and they’re working on it. That’s why I’m optimistic,” Symeonides said.

Kaminsky’s program has applied to become a clinical site for the NIH program, which would make it easier for people in the area to participate in those types of trials, he said. 

Parsonnet, too, sees progress coming. “This is a real biological disease that before too much longer we’re going to have good biological markers,” he said.

What has been effective for some of the Dartmouth patients is taking medications that are known to target several of the common long Covid symptoms at once. For example, duloxetine, sold under the brand name Cymbalta, addresses depression, generalized anxiety and neurogenic pain, according to Parsonnet.

But perhaps most helpful are the sessions with physical and occupational therapists, who talk to patients about tracking their symptoms, and curtailing activities that make them feel worse. 

For many, coming to terms with those limitations is an extreme challenge, which, coupled with associated depression in some cases, can cause deep levels of despair.  

With Pratt’s support, Symeonides said he feels like he has reached a new normal. 

“I’ve pretty much accepted it as just this is how I am now. It’s not the same person I was before though,” he said.

Roy said she has felt more like herself over the past few weeks after some major lifestyle changes, including cutting out all exercise other than walking and accepting she will regularly go to bed when others are eating dinner.

“I’m feeling fortunate that learning how to pace (myself) has made a difference,” Roy said. “I know how to play it. It’s also clearly in charge.”

West is finding the new reality difficult to accept. 

“I want it over. I want my life back. I want to be active like I used to be,” she said. She is holding onto hope that she will be among those whose worst symptoms improve over time. 

“I have to. I mean, what else am I going to do?” she said.