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For N.H. residents with myalgic encephalomyelitis/chronic fatigue syndrome, long-COVID doesn’t look so unfamiliar

Leah Stagnone (left) holds an executive order from Gov. Sununu proclaiming May 12 ME/CFS awareness day. Michelle Roy (right) of Concord says this recognition is meaningful, because the lack of awareness about the disease has led to people like her struggling to acquire an official diagnosis.
Courtesy of Leah Stagnone and Michelle Roy
Leah Stagnone (left) holds a proclamation from Gov. Sununu proclaiming May 12 ME/CFS awareness day. Michelle Roy (right) of Concord says this recognition is meaningful, because the lack of awareness about the disease has led to people like her struggling to acquire an official diagnosis.

Leah Stagnone used to hold records as a distance runner at Campbell High School in Litchfield. The 26-year-old still tries to pass by when she can, on neighborhood walks with her family dog, Theo. But a few months ago, she got a harsh reminder that she needs to move at a much slower pace than she used to.

“I got a little too confident,” Stagnone said, “and I ended up in bed for three days.”

Stagnone often feels like she’s sick with the flu. Her head will ache with unrelenting pressure. It can be hard to think straight. Too much physical exertion, including walking, can cause her symptoms to flare up.

These symptoms echo what some people are now reporting with long COVID. But they started plaguing Stagnone years before the pandemic: She has myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, or ME/CFS.

Like many COVID-19 long-haulers, Stagnone, a New Hampshire disability activist, said got sick and never fully recovered. Although scientists have not yet identified what causes ME/CFS, researchers have associated it with several infectious diseases. People have also reported similar chronic symptoms, especially fatigue, after catching other viruses like the flu and Ebola.

For years, Stagnone and others with the disease have been frustrated at the lack of funding for research for ME/CFS. Stagnone is now hopeful the growing recognition of long-COVID could lead to a long overdue rise in awareness of chronic illnesses like ME/CFS.

Still, her optimism is tinged with caution. Some experts have already expressed concern about the National Institutes of Health’s sluggish response to studying long COVID. Stagnone also worries all the focus on long COVID could be too narrow, and that research on ME/CFS could be sidelined.

Doctors and nurses at Dartmouth Health’s long COVID clinic are among those trying to make sense of how this new condition is affecting patients and how it overlaps with other chronic illnesses.

The clinic focuses exclusively on patients referred for long COVID, officially known as Post-Acute COVID-19 Syndrome, but its staff says say many patients are exhibiting symptoms that mimic ME/CFS, especially fatigue.

While Dartmouth Health’s long COVID clinic isn’t diagnosing patients with ME/CFS, staff say they are drawing on pre-existing medical knowledge about that condition to inform how they treat their patients. That includes an emphasis on helping patients recognize when they need to adjust their activity levels, and avoid  over-exerting themselves by trying to return to their pre-COVID activity or work schedules. The clinic’s staff say they try to alleviate patients’ long COVID symptoms, but they are also cautious about over-promising.

A big part of what they do, staff say, is listen.

“When we talk about post-COVID fatigue, I often see relief wash over the patient’s face when they feel validated on their symptoms,” said Christina Martin, a nurse at Dartmouth Health’s Clinic for COVID long-haulers.

For many patients experiencing symptoms of long COVID, that type of recognition can be hard to come by. Those living with ME/CFS have described similar hurdles: Stagnone and others say they were often dismissed by doctors who suggested their symptoms might be a result of depression or dismissed their concerns altogether.

Fifty-year-old Michelle Roy, of Concord, has been living with ME/CFS for more than a decade, but she said it took her nine years just to get a diagnosis. She remembers showing up to medical appointments with printed research about the disease and still encountering skepticism from her doctors. During that time, she tried her best to continue working, even as her symptoms worsened.

When Roy got an official diagnosis in 2017, that allowed her to apply for disability benefits. But that process took another three years.

“I had no means of [financial] support,” she said. “Thankfully, I was living with my sister.”

In some ways, Roy considers herself lucky to even have a diagnosis. The Centers for Disease Control and Prevention estimate that 90 percent of people with ME/CFS never get that far, perhaps in part because many doctors don’t learn about the condition in medical school.

White people are diagnosed more often than people of color, according to the CDC, but people of color are more likely to face financial hurdles and other health inequalities that prevent them from getting the care they need.

In New Hampshire, Roy has been buoyed by the rise in awareness about her condition in the wake of the pandemic. Earlier this month, the state recently marked its first ever ME/CFS awareness day, thanks to a proclamation by Gov. Chris Sununu. It’s a small step — but to Roy, it means a lot.

“I'm filled with hope and I'm filled with gratitude,” she said.

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