We all joke about it. “I am a parent. I am chronically fatigued, too.”
To patients, these comments are salt on an open wound.
This mysterious illness has been mocked by non-sufferers and physicians alike. The lack of simple medical tests, such as the blood tests used to diagnose HIV or hepatitis C, have made this disease under-diagnosed and under-treated. This life-altering and serious disease has been called “chronic fatigue syndrome” in the United States and “myalgic encephalomyelitis” elsewhere.
“It's time to stop saying that this is a just figment of people's imagination. This is a real disease, with real physical manifestations that need to be identified and cared for,” Committee Chair Ellen Wright Clayton, MD, JD, professor of pediatrics and director of the Center for Biomedical Ethics and Society at Vanderbilt University, Nashville, Tennessee, told Medscape Medical News. “This is an illness that can have a profound impact on people's function, their ability to maintain their jobs or continue their education. This was very clear from the evidence that the committee reviewed.”
Although patients have been accused of imagining or exaggerating symptoms, and some doctors have dismissed it as a psychological illness, experts agree that Systemic Exertion Intolerance Disease (SEID) has a physical basis. The challenge has been in characterizing its complex set of symptoms which afflict some one million people in the United States.
To reflect the condition's defining symptom, the report proposes a new name be adopted, “Systemic Exertion Intolerance Disease (SEID),” defined in both adults and children by the following:
1- six months of profound, new, unexplained fatigue;
2- postexertional malaise, described as “crash” or “collapse’;
3- unrefreshing sleep; and
4- cognitive problems or “orthostatic intolerance,” an inability to stand upright for more than a short period.
Unlike previous definitions, SEID is not a diagnosis of exclusion and can be applied to patients who also have other potentially fatiguing conditions.
Most patients develop the syndrome after contracting a common cold, or an acute viral illness. Other environmental toxins may act as triggers. Currently, no cause has been identified, but inflammation of the central nervous system has been implicated. The investigating panel found evidence linking SEID to immune dysfunction, especially diminished natural killer cell function, and infection, particularly Epstein-Barr virus. Other symptoms, such as gastrointestinal and genitourinary problems, sore throat, tender axillary/cervical lymph nodes, and sensitivity to external stimuli were also reported.
Dr Clayton said, “We emphatically do not want clinicians to do all the objective tests we identify. They're expensive, onerous, and not uniformly available. Often you can get most of what you need from the history and physical.”
Jennie Spotila, a patient and retired attorney who has a popular blog on the illness, said “I think the Institute of Medicine (IOM) panel got a lot of things right with the new criteria,” although she also predicts that “SEID will be controversial, especially for the advocates like myself who argued for use of the term myalgic encephalomyelitis …”
