A New Name for ME/CFS?

Chronic fatigue syndrome is real and doctors should take it seriously, the influential (American) Institute of Medicine said in a report issued this week. The report goes on to say it needs a new name to distance it from the stigma of being an imaginary illness, and doctors need clear criteria to diagnose it.

“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID),” the panel of experts said. “SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”A just released IOM report not only proposes a new way to diagnose ME/CFS, but came up with an entirely new name for the disorder as well.

“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real’.”

The committee also has a recommended list of criteria for doctors to use to diagnosed SEID:

  • A substantial reduction or impairment to work, go to school or live a normal life that lasts for 6 months or longer that isn’t helped by rest
  • Feeling unwell after exertion
  • Waking up still tired

Patients must also either have cognitive impairment – thinking and memory problems – or orthostatic intolerance – a broadly defined set of symptoms that includes dizziness when standing up and other impairments.

Cort Johnson has an excellent blog about this on his website ‘Health Rising’. Here