The illness was once known as "yuppie flu" and chronic Epstein-Barr syndrome because of its suspected link to that viral disease. But more than 15 years after chronic fatigue and immune dysfunction syndrome (CFIDS) entered the public eye, researchers learned the disorder is more than burnout among young urban professionals, and it's not virus-related.
Even though the cause is still unknown, CFIDS still carries a stigma, which frustrates people with the illness.
"Oftentimes, patients tell us they have a hard time explaining it to friends, family and co-workers because of the name," says Renee Brehio, spokeswoman for the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, based in Charlotte, N.C. The organization provides advocacy, information, research and encouragement to the CFIDS community.
Ms. Brehio notes that a recent study debunked the idea that the disorder strikes mainly white, highly educated professionals in their 20s. Unlike previous studies that targeted white, middle- to upper-class communities, this one investigated an ethnically and socioeconomically diverse inner-city area.
The results showed CFIDS developed primarily in poorly educated skilled laborers in their 40s. The study also estimated 800,000 Americans suffer from the illness. "But that might be the tip of the iceberg," says Ms. Brehio. "The study suspected less than 10 percent of people who have the illness are getting diagnosed."
Wherever CFIDS strikes, its major symptom is extreme, long-term fatigue that lasts at least six months, can't be linked to a medical or psychological disorder, isn't the result of prolonged exertion and can't be relieved even with adequate sleep.
"We're talking bone-crushing fatigue," says Ms. Brehio. "You feel as though you have the worst flu of your entire life that never goes away."
To make matters worse, the exhaustion occurs with four or more other symptoms, including impaired memory or concentration, sore throat, tender lymph nodes, unusual headaches and joint pain with no swelling or redness.
For those with CFIDS, life is one long, tiring struggle from one task to the next, with the main goal being getting back to bed.
"Many individuals find this illness relapses and remits," says Ms. Brehio. "They have good days with higher energy levels, then days during which they have a much harder time dealing with symptoms."
Although there's no cure, health care professionals can treat symptoms with medication and nutritional supplements.
"If the pain situation is addressed, and deeper sleep occurs, that can be helpful in terms of how a person deals with CFIDS," says Ms. Brehio. "Joining a support group or undergoing therapy to discuss the illness and its impact can be of great assistance, as well. This is a misunderstood disease, so talking with people who understand is very important."
Fortunately for sufferers, CFIDS is being taken more seriously now than it was in the 1980s. And people with the syndrome find having a job with flexible hours, a sympathetic family and a good physician can aid in symptomatic -- and emotional -- treatment.
"CFIDS isn't synonymous with depression, nor is it a psychological illness," says Ms. Brehio. "It's a serious medical condition and needs to be treated as such."
Testing has revealed evidence that the immune system remains activated for long periods of time in people with chronic fatigue syndrome. Many recent studies indicate that patients with chronic fatigue syndrome have defects in the ability of cells in their bodies to make energy. Some studies indicate that certain genes are built differently, and that the activity of genes in white blood cells is different in patients with chronic fatigue syndrome.
Many of these abnormalities seem to come and go, and are not permanent conditions. Furthermore, not all of the abnormalities affect every patient with chronic fatigue syndrome.
© 2014 Main Line Health