WASHINGTON – Doctors are getting a new way to diagnose chronic fatigue syndrome – and influential government advisers say it’s time to replace that hated name, too, to show it’s a real and debilitating disease.
The Institute of Medicine on Tuesday called on doctors to do a better job diagnosing an illness that may affect up to 2.5 million Americans, and it set five main symptoms as the criteria.
The IOM’s choice of a new name – systemic exertion intolerance disease, or SEID – reflects a core symptom: exertion wipes patients out.
"This is not a figment of their imagination," said Dr. Ellen Wright Clayton of Vanderbilt University’s Center for Biomedical Ethics and Society and chaired of the IOM panel. "These patients have real symptoms. They deserve real care."
Its hallmark is persistent and profound fatigue where, on a bad day, a simple activity such as grocery shopping can put someone to bed. It’s often accompanied by memory problems or other symptoms.
An estimated 836,000 to 2.5 million Americans suffer from the disorder, and most have no formal diagnosis, Tuesday’s report said.
Patients flooded the IOM with stories of years of misdiagnosis or even being dismissed by skeptical doctors as having a psychological problem instead. There’s no medical test for the disorder, leaving doctors to rule out other possible causes for the exhaustion. No one knows what causes it.
There’s no specific treatment, and the IOM found that less than a third of medical schools teach about it.
The federal government asked the independent Institute of Medicine to investigate the state of chronic fatigue diagnosis. On Tuesday, the panel issued new criteria that it said should enable any physician to tell which patients are affected.
Diagnosis requires three core symptoms: Fatigue and reduction in pre-illness levels of activity that last for more than six months; the post-exertion worsening; and sleep that is unrefreshing despite exhaustion.
Also, patients must have at least one other symptom: Cognitive impairment, sometimes described as "brain fog," or what’s called orthostatic intolerance – which means symptoms improve when the patient lies down, and patients find it hard to stay upright for long.
The IOM advised the government to develop a toolkit to help doctors diagnose the disease and to make sure the disorder is assigned a specific medical billing code.