The complicated illness that has been called chronic fatigue syndrome has a new definition and a new name: systemic exertion intolerance disease, or SEID for short.
An article appearing in NPR shots explains the changes…
The condition, which can render people housebound or bedridden and unable to work or go to school, is believed to affect between 860,000 and 2.5 million Americans. Because there is no specific test for SEID, many people who have it haven’t been diagnosed, and health care professionals often have viewed patients as complainers whose symptoms are psychological, not physical.
But a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout, says otherwise. In a report released Tuesday, the panel writes that the condition “is real” and admonishes clinicians, “It is not appropriate to dismiss these patients by saying ‘I am chronically fatigued, too.'”
The new definition, for use in adults and children, focuses on the disease’s core symptoms:
* Profound fatigue lasting at least 6 months;
* Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a “crash” and is known medically as post-exertional malaise;
* Unrefreshing sleep;
* Cognitive impairment (aka “brain fog”) or a worsening of symptoms upon standing.
This definition is much simpler than some previous ones for chronic fatigue syndrome. And it doesn’t require doctors to run a bunch of expensive and time-consuming tests to rule out other causes for the patient’s symptoms before making the diagnosis.
Beyond encouraging physicians to take the condition seriously, diagnose patients and treat their symptoms, the panel also intends for the document to spur more research funding. As more information becomes available, both the diagnostic criteria and the names are expected to evolve. The goal is to identify markers in the patient’s blood or body tissues that can be used both to diagnose the illness and as targets for treatment. Indeed, the report calls for a re-evaluation of both the definition and the name in “no more than five years.”