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But most of us don’t. And now, a move is afoot to make it a little harder to throw around a vague, broad term that sufferers know refers to a very real and debilitating condition – albeit one that is difficult to diagnose and which has no particular treatment.
The proposed new term is Systemic Exertion Intolerance Disease, or SEID, which most certainly does not roll off the tongue.
The U.S. government advisory group, the Institute of Medicine, who made the recommendation, suggest the new term is more specific, reflecting the fact that symptoms get worse after a patient exerts herself. Even going grocery shopping can send a sufferer to bed, as Associated Press pointed out.
What is the condition?
The group also defined three core symptoms that appear after a cold, flu or other illness:
- Fatigue and reduction in pre-illness levels of activity that last more than six months
- The post-exertion increase in fatigue
- Unrefreshing sleep, despite exhaustion
Patients would also have to have at least one other symptom:
- Cognitive impairment, sometimes described as "brain fog," or
- Something called "orthostatic intolerance" which means symptoms improve when the patient lies down, so the patient finds it hard to stay upright for long periods.
Removing the stigma
Proponents are hoping to make the disease easier to diagnose – starting with changing attitudes among physicians themselves, who reportedly grapple with a prejudice that the disease is a psychological one and that patients exaggerate their symptoms.
Authors of the report wrote, "It is not appropriate to dismiss these patients by saying, 'I am chronically fatigued, too,'" according to the AP.
There is another term for the disease currently in use: "myalgic encephalomyelitis," which reflects the physical symptoms of muscle pain due to inflammation of the brain and spinal cord.
The backers of the newer term argue that the ME label doesn’t “accurately describe the major features of the disease,” according to a report in the New York Times.
While some reports suggest the Canadian medical system has had more success in diagnosing and treating patients with chronic fatigue, we’ll be watching to see if the new term SEID catches on here, too.
In the meantime, the report has accomplished one thing: A more nuanced picture of a condition no one would wish for.
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