It may affect up to 2.5 million people in the United States and its insufferable symptoms are all too real to those who have to deal with it. It can seriously compromise the ability to complete even minor household tasks and it confines as much as one-quarter of those who have it to their home or bed. Yet, historically, chronic fatigue syndrome (CFS) has been so misunderstood that its very existence has been questioned. It has even been suggested that it stems from psychological issues — including mental health problems. Those behind a new initiative to promote understanding of the condition hope that with increased knowledge will come the power to overcome it.
Although the symptoms of CFS have been reported for decades, the condition itself was not officially "operationally defined" by the Centers for Disease Control and Prevention until 1988. Despite a landmark publication that defined CFS as a specific condition, a significant number of health professionals — not to mention the public at large — have continued to debate the veracity of its claimants. According to Medical News Today (MNT), "less than half of medical textbooks and less than one third of medical school curricula contain any information about the disease." As a result, says the Institute of Medicine (IOM), between 84 and 91 percent of people with the condition remain undiagnosed.
Now a panel of health specialists organized by the IOM has made a move to dispel disbelief and boost treatment. According to a report by James McIntosh for MNT, the panel has suggested a "new diagnostic criteria and a new name for the disease in order to more accurately reflect the main characteristics of the condition and improve levels of treatment."
This attempt to focus on what CFS actually is gets to the heart of the general skepticism that surrounds the disorder. The diverse underlying causes and varied symptoms of the illness have meant it has remained especially difficult to define. Those affected by CFS, the Mayo Clinic says, can experience fatigue, headaches, loss of memory or concentration, sore throat, unexplained muscle and joint pain, enlarged lymph nodes, and, most crucially of all, un-refreshing sleep as well as "extreme exhaustion lasting more than 24 hours after physical or mental exercise." The causes of the condition are also unclear. According to the National Institute of Health (NIH), "[t]here are differing views as to whether [CFS] is a central nervous system, metabolic, infectious or post-infectious, cardiovascular, immune system, or other type of disorder." With such a lack of clarity in the understanding of the condition by clinicians, it is little wonder the public perception of it is also somewhat vague.
Even the name of the condition is unclear. In Europe and Canada, it has traditionally been called myalgic encephalomyelitis or M.E. whereas in the United States and Australia it is chronic fatigue syndrome. Currently, it is referred to internationally as ME/CFS. Both of these terms, however, can add to the confusion already present. As certain symptoms may be indicative of other illnesses, myalgia, or muscle pain, is not seen as a so-called "core symptom" of CFS. Similarly, the inflammation of the brain implied by encephalomyelitis is by no means present in a sufficient number of cases to warrant use of the term. In its turn, chronic fatigue syndrome comes loaded with historical baggage and cultural connotations — like the willfully ignorant stories of the 1980s surrounding so-called "yuppie flu" — that lead to misinformation and misgiving. Having no clear pathway to diagnosis — all diseases with "overlapping" symptoms must be ruled out before CFS can be confirmed — and no medically or culturally neutral way of describing it, CFS remains a profoundly misunderstood condition.
At the IOM, the panel's task was to pin down the nature of this elusive complaint and so level the playing field for patients and doctors alike. They pinpointed three core symptoms:
1) An impaired daily function
2) A noticeable exacerbation of symptoms after physical, emotional or cognitive exertion
3) Un-refreshing sleep
If these are present and the patient has both or either one of two additional symptoms — the impairment of cognitive ability or the commencement of symptoms when the patient is standing up (known as "orthostatic intolerance"), a diagnosis can be made.
The IOM team has further suggested the term "systemic exertion intolerance disease" or SEID to describe the ailment, a name they believe more accurately fits the condition and its causes and that "appropriately captures the complexity and severity of the illness."
According to figures published by the Washington Post, of the very small number of sufferers who are actually diagnosed, between two-thirds and three quarters describe waiting more than a year for their results to be determined. Almost a third had to wait more than five years — the vast majority of cases, it is believed, go undetected.
The NIH reports that "certain racial/ethnic groups have also been found to be at an increased risk for ME/CFS; most notably Native American and African American populations." There is also data to suggest that pregnancy and adolescence are key times for developing the disease although the reasons these groups are at particular risk have still not been fully established.
A national public awareness campaign is planned by the IOM to bring the panel's message to professional and layperson alike. It is hoped that a more vivid picture of the condition will foster a healthier public attitude, which will, in turn, lead to better results for sufferers and greater peace of mind for their families.