CONCORD, N.H. — Veronica Dane had always been active, from playing soccer as a kid to working a demanding job as a critical care nurse. Until, one day, she just couldn’t do it anymore.
She started eliminating activities and duties, whittling away the things that had once brought joy and a steady income but were now, instead, bringing unbearable physical pain.
It took Dane years of working with doctors and doing her own research to understand how she had gone from a healthy, active person to being bed-bound for over a year, so sensitive to sound that she couldn’t be in the same room as her children.
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In 2020, she finally learned she had myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. The disease is still something of a mystery to modern medicine — researchers don’t know what causes it, most doctors don’t learn about it in medical school, and it goes undiagnosed in around 90 percent of cases, according to the Centers for Disease Control and Prevention.
It’s also been largely overlooked when it comes to research and funding, according to disability rights advocates and researchers in the field. But now, several preliminary studies show, about half of people with long COVID-19 have severe enough symptoms to be diagnosed with ME/CFS — and doctors and disability advocates hope this will shine a light on the disease, leading to more education and research.
“It’s really long COVID that’s changing everything,” said Dr. Lucinda Bateman, who specializes in ME/CFS. She runs a clinic and nonprofit called the Bateman Horne Center in Utah that focuses on addressing the disease and educating doctors about it. “Post-COVID conditions are going to force everyone to embrace at least long COVID, and then eventually I’m hoping the biases about ME/CFS will gradually diminish,” she said.
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Darlene Gildersleeve is a patient advocate in New Hampshire who knows firsthand how debilitating long COVID can be. She first got COVID in March 2020 and experienced neurological symptoms including loss of speech, balance issues, and cognitive dysfunction. She said she never recovered to her baseline, and those symptoms will still flare up if she pushes herself too hard. Gildersleeve’s family has taken a financial hit because her husband has to take days off from their trucking business to care for her and she can’t work when she’s ill. She’s had to find ways to deal with her fatigue, like homeschooling her daughter while lying on the couch.
“Sometimes I get resentful,” Gildersleeve said. “Sometimes I get sad. But the biggest emotion is extreme frustration.”
Gildersleeve believes more research and doctor training for long COVID can help those with an ME/CFS diagnosis, which is why she’s pushing for the CARE for long COVID Act, federal legislation to fund research and doctor training.
“My biggest hope is clinical trials,” she said.
Researchers are still working to answer a lot of basic questions about long COVID including what causes it, how to diagnose it, and how to treat it. In some cases, it turns into ME/CFS, which can help doctors learn more about both conditions.
ME/CFS is a chronic illness that impacts the nervous system, which in turn affects circulation, the immune system, energy, sleep, and how pain manifests. The disease can worsen after physical or mental activity, known as post-exertional malaise. For some, routine daily functions like going to the bathroom or taking a shower can cause immune and neurological symptoms to flare up: flu-like symptoms, exhaustion, swollen lymph nodes, increased pain.
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Around 75 percent of people diagnosed with ME/CFS are women. “In the 1980s and 1990s, it was considered a kind of female hysteria. It took decades to dispel the idea that it was a mental health disorder or people were weak,” Bateman said.
Stigma continues to surround ME/CFS today. The six women interviewed for this story said both the medical system and society continue to discount and disbelieve symptoms that are often invisible to the outside world, calling those who have them lazy or depressed.
“When you see a slice of this illness, it’s easy to judge,” Bateman said. “But this family of illnesses is horrible, and it adds insult to injury to have people doubt you, whether it’s friends or family or technical people.”
Bateman said that for a long time there was no interest from the medical community in learning more about ME/CFS. She got frustrated by the lack of progress and has since worked to publish educational resources for doctors and expert consensus on best clinical practices.
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If more resources and research had gone toward better understanding ME/CFS, the country could have been in a better place to respond to long COVID, he said.
There’s no cure for ME/CFS, and patients are mostly left to manage it by spending their energy carefully to avoid a flare-up. There are few doctors trained to recognize it, and the wait time to see a specialist can be over a year.
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The effects of ME/CFS on those who have it are life altering. Michelle Roy of Concord, N.H., self-diagnosed in 2009, when she was a photo-shoot stylist in New York. In the years of illness, her energy was so diminished that she lost both her career and a romantic relationship. She said a doctor diagnosed her with ME/CFS in 2017, and now she’s on disability.
“That’s the challenge,” Dane said. “How much can you cut out of your life without being crushed? It’s really hard as a parent.”
Dane said she has to say no to things she wants to do, like allowing her son Alton to take karate because she knows she will not have the energy to pick him up after class. In other instances, she will say yes and pay the price. In April, there was an all-day event for her teenage daughter Ainsley’s school. “I have not been the same since then,” Dane said. “I just want to be lying down.”
She was also determined to take Ainsley on a rafting trip last summer. “This may kill me,” she said. “Nobody knows that, because I look like a normal person, but I’m carrying the stupid raft and I’m dying on the inside.”
Cognitive tasks like dealing with difficult emotions take a toll as well. “But you can’t tell a 6-year-old, like, ‘Can you please stop crying because it’s physically ruining me?’ ” Dane said. These days, she spends 21 to 22 hours a day in bed. She can usually watch TV, but she can’t usually read because it’s too mentally taxing. Still, she collects piles of books around her bed.
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While individuals have countless stories about what ME/CFS has taken from them, disability rights activist Leah Stagnone said listeners often think of them as sob stories — which misses the point.
“We don’t want people to see it as, ‘Oh, that’s a sad story.’ For us, it’s a policy issue,” she said. “It’s a system issue because our illnesses have been so severely underfunded at the federal level because of this lack of medical education, because of stigma and medical misogyny.”
More research into the disease could help create a diagnostic for it, lead to better treatments, or even a cure. Funding would allow for more primary care doctors to receive training so they would know how to recognize and treat patients who present the symptoms of ME/CFS and long COVID. More trained doctors could mean less wait time for patients who are desperate to see someone who can help them.
Stagnone got Lyme disease when she was 20 and it irrevocably changed the course of her life. The infection led to ME/CFS, and now at 27, Stagnone — who had been healthy and active — is facing a lifetime of chronic illness.
“One of the biggest things that I want people to know is that chronic illness sucks, but not just because you’re sick,” she said. “There are so many systemic factors that could be changed to make this experience much less awful.”
This article has been updated to correct the spelling of Lyme disease and clarify that the bacterial infection led to ME/CFS.
Amanda Gokee can be reached at amanda.gokee@globe.com. Follow her on Twitter @amanda_gokee.