'Chronic Fatigue Syndrome' Gets New Name, Broader Legitimacy

A prominent panel of government advisers have concluded that it’s time to give “chronic fatigue syndrome” a new name as part of a campaign to further legitimize the debilitating disease, remove its decades-old stigma and facilitate its diagnosis by physicians.

The report by the U.S.-appointed Institute of Medicine calls on doctors to improve diagnosing the 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 — is derived from its core symptom of fatigue, or exertion, that can stop patients from having a normal life. The name “chronic fatigue syndrome” was chosen by the  U.S. Centers for Disease Control and Prevention (CDC) in 1988.

These are ‘Real Symptoms’
“This is not a figment of their imagination,” said Dr. Ellen Wright Clayton of Vanderbilt University’s Center for Biomedical Ethics and Society, who chaired the IOM panel. “These patients have real symptoms. They deserve real care.”

Many patients with the condition have been accused of imagining or exaggerating their symptoms, and some doctors have long viewed it as a psychological illness.

But new studies indicate there could be physiological dysfunctions associated with “chronic fatigue,” providing potential breakthroughs for patients and their doctors. In one brain study, published last year by The Journal of Nuclear Medicine, researchers used functional PET imaging to show that levels of neuroinflammation, or inflammation of the nervous system, are higher in patients with chronic fatigue syndrome than in healthy people.

More Research Needed
The IOM called for the funding of additional clinical research. “Studies assessing the natural history of the disease and its temporal characteristics—onset, duration, severity, recovery and functional losses—are essential for a better understanding …” the panel’s report says.

According to the U.S. Centers for Disease Control and Prevention, symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities. Chronic fatigue syndrome, or SEID, is twice as common in women.

“These symptoms are usually present for six months or longer, and they’re usually severe enough to reduce daily activity by 50 percent or more,” says Patricia Feito, M.D., a family medicine specialist affiliated with Baptist Health. “The most important thing is to rule out any other organic causes (of the fatigue), utilizing extensive lab work and a thorough family history, and screening for any issues related to blood sugar, the thyroid and the immune system.”

New Criteria for Diagnosis
The U.S.-appointed panel also recommended a new criteria for diagnosing “chronic fatigue syndrome” or SEID. The diagnosis requires that the patient have the following three symptoms:

1.  A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest.
2. Post-exertional malaise.
3. Unrefreshing sleep

At least one of the two following manifestations is also required:
1. Cognitive impairment or
2. Orthostatic (upright posture) intolerance.

The IOM’s reports states that: “Broad dissemination and use of these criteria are essential to improve understanding of the disease among healthcare providers and the public, and provide a firm foundation for future improvements in diagnosis and treatment of these patients.”

Tags: chronic fatigue