New Evidence Shows Chronic Fatigue Syndrome, a 'Made Up Disease,' May Be Real

People thought to have chronic fatigue syndrome aren't just tired. The estimated one million Americans it affects can have various symptoms including insomnia, loss of concentration, and joint and muscle pain. At its most severe, the disease could affect patients for months or years, preventing them from keeping their jobs or having normal lives; sometimes they can't even get out of bed.

The problem is, no one has ever really been certain that chronic fatigue syndrome (CFS) is even real because the symptoms are also shared with a lot of other conditions. With no understanding of why CFS occurs, doctors struggled to treat it.

New insight into the brains of patients with the disease may help doctors finally understand the causes behind the disease—and give patients the legitimacy they have been craving. But there's a long way to go before these results can be applied in a clinical setting.

"This is a very common and debilitating disease," Michael M. Zeineh, a professor of radiology at Stanford University School of Medicine in California and an author of the study, said in a press release. "It's very frustrating for patients, because they feel tired and are experiencing difficulty thinking, and the science has yet to determine what has gone wrong."

For years, researchers didn't know where to look for the causes of CFS. One virus seemed to be the culprit, but repeated studies gave no evidence for this idea, even though antivirals that doctors prescribed some CFS some patients actually helped. When it was clear the virus wasn't to blame, researchers started to look to the brain.

For this study, published yesterday in the journal Radiology, the researchers took magnetic resonance imaging (MRI) scans of 15 CFS patients. In each part of the brain they imaged, the researchers were looking for three things: the volume, the blood flow, and the amount of white matter, the "network" that allows parts of the brain to communicate with one another.

It's not the first time scientists have taken brain scans of CFS patients, but the authors of this study point out that previous scans were not consistent or as detailed. So the authors of this study found some things they expected—like that CFS patients had less white matter in their brains overall by volume than did people without CFS.

But another measurement of the white matter uncovered something unexpected. One key part of the network of white matter, called the arcuate fasciculus, connects two major parts of the brain, the temporal and parietal lobes that are responsible for processing different aspects of sensory information, to the frontal lobe, which makes decisions and modulates emotions. In CFS patients, the arcuate fasciculus on the right side of the brain appeared to have a more restricted flow than in normal patients.

Researchers don't really understand what this abnormality means when it comes to function, in part because they're not quite sure what the arcuate fasciculus does in that part of the brain (they know that the left side helps people understand language, but they have little understanding about the right). And the more debilitating the patients' CFS symptoms, they found, the researchers stated, the greater the abnormality.

"This right-sided change in the brain, this arcuate fasciculus being strong, it may be some kind of pathological fatigue network that develops. Like the brain gets shuttled into some fatigue state rather than the normal state," Zeineh said.

This study is still very preliminary, so no real conclusions can be drawn from it. Others in the field (and the authors themselves) note that sample size is too small to generalize the findings for all CFS patients. Plus, the results need to be validated by other studies before doctors can start to understand what they mean—a test that few earlier studies have passed, which have rendered them clinically useless.

Even though this finding may seem small, researchers are hopeful that they have been able to identify a particular culprit for a disease that has been so mysterious for so long. With more testing, the disease may even be validated as something that has a real physiological effect on patients. Jose Montoya, another of the study's authors and an infectious disease specialist at the Stanford School of Medicine, said in a press release, "It's almost like we're saying [to patients], 'You were right all along. Hopefully this will put you where you deserve to be, in a real clinic with treatments.'"