In California, patients wait up to five years for initial appointments at a Stanford clinic that caters to chronic fatigue syndrome. “That’s how little supply there is for the demand,” says Jarred Younger, PhD, head of the new Neuroinflammation, Pain and Fatigue Lab at UAB. “No specialty has taken it on.”
This lack of a medical specialty for chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS), results from the cause of the disease remaining unknown. At the Stanford clinics, led by Jose Montoya, MD, the theory runs to a viral infection. “They think it may be hiding in the brain, and it’s not constantly active,” Younger says. “When it flairs up, so do the symptoms.”
Younger also thinks the cause may lie in the brain, but from a different source. “We believe there is a low level of inflammation in the brain,” he says.
When the immune cells exclusive to the brain, called microglial, activate to fight trauma or disease, they secrete an array of chemicals. “And they all make you feel tired,” Younger says. “We think the microglial are tricked into thinking there’s a problem all the time, so they constantly produce the chemicals that make ME/CFS patients feel profoundly fatigued.”
In March, research identified a new potential trigger for the inflammation. Leptin, a master hormone in the body that controls hunger, also interacts with the microglial in the brain. “They found people with chronic fatigue have a high level of leptin on their bad days, and on those bad days, the leptin in women is three times higher than in men.” Women are also four times more likely to have ME/CFS than men.
“This could lead to potential treatments,” Younger says. But the road may lead more toward correcting the patients’ intolerance to leptin rather than to directly diminishing leptin levels.
In people with an intolerance, the body keeps producing more and more leptin. “You can see how horrible this is, because all the while the brain is getting more inflamed,” Younger says. Curing the intolerance would shut down the leptin overload and eliminate the inflammation.
For now, with the cause of chronic fatigue syndrome remaining a mystery, treatments tend to lean toward alleviating symptoms. Patients often find themselves on antidepressants and stimulants, like Ritalin.
The treatment at the Stanford clinic focuses on complex antivirals. “It’s worked for a lot of people,” Younger says, hence the backlog of patients. Without an FDA-approved treatment, though, most of the one-million ME/CFS patients in the U.S. run through innumerable treatments.
“It’s one of the most frustrating things to deal with as a physician, and physicians don’t like not being able to help. It’s why ME/CFS patients get shuffled around, because there is no one place to send them for help,” Younger says. He adds that the condition is not that uncommon, striking more often in the United States than multiple sclerosis, lupus, and many forms of cancer.
Diagnosing the disease is equally frustrating. The name oversimplifies the condition and no test or unique set of symptoms separates ME/CFS from a whole host of other diseases. “There’s no biomarker,” Younger says. “What’s missing is a brain scan or a blood test. We’re working on that.”
ME/CFS patients often get misdiagnosed by physicians as hypochondriacs or simply depressed. “The debilitating chronic fatigue means you can’t do the things you want to do which creates an emotional toll,” Younger says. “So unlike depression, you’re not fatigued because you’re depressed, but you’re depressed because you’re fatigued.”
One symptom does stand out in its severity. “There are things that are pretty unique about ME/CFS,” Younger says “The main one is why they changed the name.”
In February, The Institute of Medicine proposed the new name of systemic exertion intolerance disease (SEID). They believe the term better reflects the core symptom of sustained lethargy days after minimal cognitive or physical exertion.
They also included new diagnostic criteria. “Six months of profound, unexplained fatigue, post-exertional malaise, and unrefreshing sleep,” Younger says. Patients must also exhibit cognitive problems or an inability to stand upright for more than a short period.
A pitfall for physicians is prematurely diagnosing for SEID. “My biggest concern is that physicians would stop doing tests too early for potential causes of the fatigue, because so many diseases have to be ruled out,” Younger says. For instance, Lyme’s disease causes severe fatigue and the tell-tale rash does not always appear. “You can treat that with specific antibiotics. But if you miss it, that patient could be sick for years,” Younger says.
Younger and his team will be conducting studies on the causes and hopefully treatments for SEID and similar diseases, such as fibromyalgia. To view information about their studies, follow the links at www.psy.uab.edu/younger. If physicians have patients who wish to participate in any of Younger’s research, they should send information to firstname.lastname@example.org or call 205-975-5907.