Dr. Jose Montoya, of Stanford University, became interested in chronic fatigue syndrome (CFS) early in his career. At that time, few doctors wanted to touch it. Most believed it was imagined or due to a mental health condition.
“When I was a medical student in the ‘90s, we were instructed that CFS patients could not be seen in our clinic,” Montoya, professor of infectious diseases and geographic medicine, told the Guardian in April 2016. “And a letter was sent out to those patients telling them not to come.”
Slowly, that kind of thinking is changing. And new research about a potential cause of chronic fatigue syndrome is both stunning and enlightening.
Chronic Fatigue Syndrome: A ‘Complex, Systemic’ Disease
In 2015, the prestigious Institute of Medicine of the National Academies of Sciences, Engineering, and Medicine issued a report that gave chronic fatigue syndrome more credibility. It called CFS “a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.” (The Institute has since been renamed the Health and Medicine Division.)
A lot of the bacteria groups that are reduced or absent from people with CFS are not ones that you can take in a pill.
— Maureen R. Hanson, Cornell University
And though relatively little research has been done due to a lack of funding, recent studies have turned up physiological signs of the disease. It often appears to start, and flare up, with some kind of infection. Some individuals with the illness have identifiable differences in their brains, as Stanford researchers like Montoya have found.
“The reason this was of interest was a number of people who have this disease complain of gastrointestinal issues,” said Maureen R. Hanson, a professor in the Department of Molecular Biology & Genetics at Cornell University, who participated in the research. They often suffer from loss of appetite, diarrhea, constipation and general stomach discomfort, she said.
“Some of the symptoms people are feeling could potentially be caused by what is often termed leaky gut syndrome. So we wanted to find out if there were any abnormalities in the composition of the gut microbes,” she said.
The answer was yes.
Variations in Bacteria
There were differences in the amount of diversity of the bacteria and the amounts of particular bacteria, Hanson said. Researchers found lower levels of anti-inflammatory bacteria in the people with chronic fatigue syndrome — and higher levels of inflammatory markers in their blood.
“So all of these differences point to a genuine biological difference between people with this disease and healthy people,” Hanson noted.
Her team’s two-year study, which examined 48 people with the disease and 39 healthy volunteers, is another piece of evidence that CFS is “not a psychological illness,” she said.
Would Change of Diet Help?
If at least part of the problem lies in the gut, then can people combat chronic fatigue syndrome by eating differently or taking some kind of supplements?
Hanson said many people have asked her that question.
“The problem is, it’s premature to suggest any remedy right now, it would need to be studied,” she said. “This [lower level of] diversity has also been seen in ulcerative colitis and Crohn’s disease, and maybe studies on those diseases as well as this one might provide some information.”
Complicating the matter is the fact that there is no good way to get the “missing” bacteria into someone’s system.
“A lot of the bacteria groups that are reduced or absent from people with CFS are not ones that you can take in a pill,” Hanson said. “They’re just not available. Nobody knows how to grow them.”
Other Areas of Research
Montoya said his research on chronic fatigue syndrome markers in the brain “hold(s) the promise of identifying the area or areas of the brain where the disease has hijacked the central nervous system.”
And progress has been made in clarifying the role of inflammation in the disease, he said.
“Many physicians and researchers thought patients with CFS didn’t show signs of active inflammation,” he told O, or Oprah magazine, in 2015. “But when we began to perform more in-depth tests, the results were staggering. A picture of patients with highly inflamed bodies emerged before our eyes and validated what they’ve been telling us for decades.”
Who Is Affected?
An estimated 840,000 to 2.5 million Americans suffer from chronic fatigue syndrome, according to the Health and Medicine Division. But the agency adds that between 84 and 91 percent of those with the disease have not yet been diagnosed — meaning its actual toll remains a mystery.
The condition affects more women than men.
Its symptoms include:
- Difficulty or inability to accomplish normal daily tasks
- Profound fatigue
- Feeling unrefreshed after sleep
- Feeling worse after physical, mental or cognitive effort
- Cognitive impairment
- Feeling worse while upright and better while lying down.
Other common symptoms include pain, inability to recover from infection and abnormal function of the immune system.
In its report, the agency suggested renaming the condition to “systemic exertion intolerance disease,” to “more accurately capture the central characteristics of the illness.”
It said that more research is “urgently needed.”