It took two years and six doctors before Lindsay Sihilling was diagnosed with chronic fatigue syndrome. Though it helped to have an explanation for the crushing fatigue, mental fogginess and constant flu-like symptoms, Sihilling still faced the skeptics who were sure it was just a made-up disease to cover for laziness.
“For me [the diagnosis] was not, and still is not, enough,” said the 27-year-old St. Louis writer. “It doesn’t get taken seriously. People don’t realize it can be completely debilitating. We need hard science that this is real, that supports these very vague symptoms.”
That hard evidence may finally be here.
Using new imaging methods, Stanford researchers found distinct differences between the brains of patients with chronic fatigue syndrome and those of healthy people, according to a study published in Radiology Wednesday.
The findings, if duplicated in other studies, could help doctors more definitively diagnose the syndrome and also help researchers better understand the underlying mechanism that drives the symptoms, said Dr. Michael Zeineh, an assistant professor of radiology at the Stanford University School of Medicine.
“Most CFS patients at some point in time have been accused of being hypochondriacs and their symptoms dismissed by others,” Zeineh says. “And there is still skepticism in the medical community about the diagnosis. That’s one of the reasons these findings are important.”
CFS is estimated to affect somewhere between 1 million and 4 million Americans, Zeineh says. Along with the hallmark symptom of a crushing, unremitting fatigue that persists for six months or longer CFS patients also will have at least four of the following: impaired memory or concentration, sore throat, tender lymph nodes, headaches, muscle pain, joint pain, unrefreshing sleep and post-exertional malaise.
Zeineh and his colleagues found several anomalies in the brains of CFS patients, including a reduction in the amount of white matter—a part of the brain that is composed of long fibers which serve as the communication cables between nerve cells.
The researchers suspect the decrease in white matter is a sign that there is some sort of chronic inflammation going on in the brains of CFS patients — and perhaps throughout their bodies as well. It’s possible, Zeineh says, that the inflammation was sparked by the response to a viral infection.
While Zeineh and his colleagues had expected to see damage to the white matter, they were surprised to find an abnormality in a bundle of nerve fibers in the right hemispheres of patients with CFS. This nerve tract, which is called the arcuate fasciculus, connects the frontal lobe and the temporal lobe. It appears on both the right and left sides of the brain. On the left side it seems to be crucial to language, but what it does on the right side is uncertain.
One thing is clear, Zeineh says, “the more abnormal this tract was in a patient the worse the fatigue was.”
Zeineh hopes the future research will be able to connect brain abnormalities to the symptoms patients report.
In Sihilling’s case those symptoms have been life-altering.
“I used to be a long-distance runner,” she said. “I ran six miles. Now some days I can’t even walk a mile. It’s really crazy how your energy is sapped. And that really is disheartening. So much of my identity was wrapped up in being a strong student and an athlete.”
These days she has to work around her symptoms, taking a nap every day to recharge. “There’s a lot of brain fog and listlessness,” she said. “Sometimes I get headaches and flu-like symptoms.”
CFS experts welcomed the new study.
“It suggests an actual organic basis for the symptoms of chronic fatigue syndrome,” said Dr. Paolo Nucifora, an assistant professor of radiology at the University of Pennsylvania School of Medicine. “And I think it will definitely spark other research.”
Jeanne Melvin hopes it will one day lead to a diagnostic test for the syndrome.
“It would be absolutely wonderful of we could find some sort of objective testing that could clearly diagnose chronic fatigue syndrome,” said Melvin, a pain and sleep therapist at the University of California, Los Angeles. “It’s a small study and it will have to be duplicated. But the results were very dramatic. So that is very heartening. This is a syndrome that can just destroy lives. It can cause such terrible impairment that people become totally disabled.”
Linda Carroll is a regular contributor to NBCNews.com and TODAY.com. She is co-author of "The Concussion Crisis: Anatomy of a Silent Epidemic” and the recently published “Duel for the Crown: Affirmed, Alydar, and Racing’s Greatest Rivalry”