When Ginevra Liptan came back to medical school after a year’s leave, she told her favorite professor she’d taken time off to deal with the onset of fibromyalgia. “He rolled his eyes and said, ‘That doesn’t exist,’” says Liptan.
In the 16 years since Liptan had her illness so summarily dismissed in 2002, there are still those who believe fibromyalgia isn’t “real.” There’s no tissue damage that explains the pain fibromyalgia patients experience all over their body, and contemporary medicine struggles to treat and even accept an illness where pain seems to be rooted in the mind or brain, rather than a bodily injury.
Patients typically see upwards of 10 specialists before they’re diagnosed with fibromyalgia, says Liptan, who is now a doctor and founder of the The Frida Center for Fibromyalgia in Portland, Oregon (the center is named for the artist Frida Kahlo, who some doctors and art historians believe suffered from fibromyalgia). One study of 51 patients found it took, on average, seven years to get a diagnosis.
Artificial intelligence, though, has the potential to make a diagnosis in minutes. Last year, researchers used machine learning to distinguish the brain scans of those with fibromyalgia from those without—with 93% accuracy.
The implications are immense: Decoding the brain signature for fibromyalgia could hold the key to understanding the disease and which treatments work for which patients. But it’s also a definitive, objective sign that fibromyalgia really does exist.
There’s no accepted criteria for diagnosing fibromyalgia. There is no known biological malfunction, nor is there any biomarker that can be uncovered in a lab test. Patients experience pain all over their body, fatigue, insomnia, difficulty focusing, depression, and 18 “tender points”—including the back of the neck, elbows, and knees—that are sore to the touch. Antidepressants, painkillers, physical therapy, acupuncture, massage, counseling, and exercise are all used to treat the condition, with varying effects.
Online support groups discuss the benefits of alternative treatments, such as hypnosis or turmeric supplements, and are often the only forum where those with fibro can find a sympathetic audience for their frustration over suffering from a disease no one understands. Both patients and researchers believe skepticism around the illness partly reflects gender discrimination: Close to 90% of fibromyalgia patients are women.