For the multitude of people suffering from chronic fatigue syndrome, there is some good news. After decades of battling for proper recognition and diagnosis methods, chronic fatigue syndrome is finally recognized as a real disease by the Institute of Medicine; and it has been renamed as systemic exertion intolerance disease.
The Institute of Medicine (IOM) was established in 1970 as an independent, nonprofit organization with the goal of providing unbiased, authoritative advice to government decision makers and the public.
The Institute was asked by the Department of Health and Human Services, the Social Security Administration, the National Institutes of Health, the Food and Drug Administration, the Agency for Healthcare Research and Quality, and the Centers for Disease Control and Prevention to form a committee of experts to review the evidence base for myalgic encephalomyelitis/chronic fatigue syndrome.
New diagnostic criteria
The 15-member committee compiled a 235-page report titled, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining An Illness.” Included in the report is a new criteria for diagnosing the illness, to hopefully expedite the provision of care and enhance understanding of the illness among healthcare workers.
The new diagnostic criteria, includes:
· A significant reduction in the ability to participate in pre-illness levels of educational, social, occupational, or personal activities that lasts more than six months and was not a lifelong pre-existing condition,
· A profound malaise experienced after exertion,
· Sleep that does not refresh and rejuvenate the sufferer,
· Development of symptoms when standing that are relieved when the person sits back down (orthostatic intolerance), and
· Impairment of cognitive functions.
A name change
Also in the report was the official committee recommendation that the illness now be classified as systemic exertion intolerance disease (SEID). The name change recommendation came about because the committee felt it, “captures a central characteristic of this disease – the fact that exertion of any sort (physical, cognitive, or emotional) – can adversely affect patients in many organ systems and in many aspects of their lives.”
On the original name of the illness, the committee stated, “chronic fatigue syndrome affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.”
Suffering from a stigma
This illness affects between 860,000 to 2.5 million Americans, leaving them incapacitated and unable to go to work or attend school. Sadly, it is estimated that 84 to 91 percent of sufferers are undiagnosed. It seems to affect women more frequently than men. The typical age of onset is approximately 33; however, it has been seen as in people younger than 10 years of age and those over 70.
At present, there is no conclusive test to confirm a diagnosis of SEID. Not to mention, sufferers of the illness have to deal with a publicly held stigma that their symptoms are primarily psychological.
However, the tides are turning, and SEID is becoming increasingly accepted. Now, we hope that more will become understood about this debilitating condition soon, so that sufferers can experience a greater quality of life.
-The Alternative Daily