Chronic Fatigue Syndrome Gets an Exhausting New Name

It’s been around for decades, and 2.5 million Americans suffer from it. Yet chronic fatigue syndrome has always gotten the side eye from skeptics. The name itself raises eyebrows. In our crazy hectic world, aren’t most of us chronically fatigued? Also, since the symptoms are vague and it’s not like it shows up on an MRI or via another test, some doctors dismissed it as more of a made-up thing than a physical condition.

Now, a report from the Institute of Medicine (IOM) makes the case that it is a physical illness that can be accurately diagnosed and treated. To emphasize their point, the IOM members behind the report renamed the disorder systematic exertion intolerance disease (SEID). Okay, it’s not exactly a catchy rebranding. But the more precise name signals the IOM’s support that the condition is real, based on an extensive review of studies and other medical literature.

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“The old name may have underemphasized the severity of the disease, preventing doctors from recognizing it and people who have it getting the care they need,” says Peter Rowe, M.D., a member of the IOM committee that produced the report and the director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore. “Extreme fatigue is not trivial; one quarter of those who have it will become housebound.”

With new diagnostic criteria, the hope is that doctors will be better able to pinpoint who has SEID. The IOM identified five signs: an inability to do the mental and physical tasks a person used to handle with no problem; feeling wiped out when they attempt routine tasks; experiencing brain fry, like mild memory issues; greater exhaustion while standing; and an inability to get restful sleep. “These guidelines are easier for general practitioners to identify than the criteria we had before,” says Rowe. Once they ID it, treatment can start—which right now means addressing the symptoms since no meds exist for SEID itself.

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SEID might be the latest in a long line of medical conditions once thought to be faked or pretend (hello PMS!). So the new name and other changes are definitely a step in the right direction. And with more people being diagnosed (mostly adult women, who outnumber adult male sufferers three to one, though experts aren’t sure why, says Rowe), there may be more momentum in the scientific community to discover why SEID strikes.

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