It’s one thing to suffer from exhaustion, pain and headaches. But what if all three last for years? Imagine sleeping 14 hours a day and still feeling tired. Years go by, and you lose the respect of your friends, family and employer. Even your doctor is wondering whether you might be an insomniac or, worse, a hypochondriac.
It’s hard enough to understand an illness that eschews specific diagnostic methods and varies greatly from person to person. But chronic fatigue syndrome also has another disadvantage: It involves an ailment everyone experiences—fatigue. If you’re like most sufferers of this devastating illness, you learn to struggle through it, and you may even discover a new—sometimes better—life.
Much of CFS research reads like a mini-history of American wellness culture, with an emphasis on self-care, low-impact exercise, women’s health issues and integrated medicine. Patient studies range from the impact of stress hormones and potassium on energy levels, to how fatigue impairs memory and concentration.
“One of the first signs something was going wrong was that I had trouble concentrating in [math] class—and I always loved math,” says Doylestown’s Stephanie Mordan, a cake designer who became ill as a teenager in the early 1990s after an acute bout with mononucleosis.
Mordan is among those who cite “brain fog” as the worst symptom. On some days, the illness makes her feel “like my IQ has dropped 20 points.”
Though CFS is an equal opportunity illness, affecting individuals of all ages, races and classes, it’s been known to target hard-working adults between the ages of 40 and 59—a healthy, productive and active demographic. That may explain why the affliction’s legitimacy has been questioned since it came to light in the 1980s. To borrow a saying from that decade, CFS may well be the Rodney Dangerfield of the medical community: It gets no respect.
Two years ago, the New York Times reported that CFS patients and scientists couldn’t agree on the prevalence of the syndrome or even its name. In the same story, it was revealed that the Centers for Disease Control and Prevention diverted millions of federal dollars earmarked for CFS to other programs.
Recent news from the CDC has been more encouraging. A $6 million public awareness campaign dubbed “Spark!” is underway, initiated by the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, based in Charlotte, N.C. According to the group, CFS was identified as a distinct medical disorder in the 1980s—three decades after England and Europe had recognized it.
Twenty years of intensive research have yet to produce a cure, but strides are being made. For one, American scientists have come up with several diagnostic markers that help rule out other illnesses.
Chronic fatigue syndrome is four times more likely to affect women than men. Aside from fatigue, its symptoms mimic those of such well-known diseases as multiple sclerosis, hypothyroidism and clinical depression. Some people experience extreme sensitivity to light, sounds and touch. Others can’t tolerate temperature or diet changes. Still others have heart palpitations, sore throats, migraines and tender lymph nodes. What’s more, those illnesses often mistaken for CFS are widely accepted, including Lyme disease and mononucleosis.
Anyone with pervasive exhaustion can become a target for misunderstanding and indifference from others. And those with CFS have an additional handicap: recurring periods of relative wellness. They respond to the illness in many ways—which is where you come in.
Even if you’re not one of the 4 million Americans with CFS, the research surrounding it could affect you in some way. That’s largely because it’s such a complex illness—one that involves the brain, plus the immune, endocrine, cardiovascular and autonomic nervous systems. Treatments are many and varied, and include the latest in holistic medicine and powerful antiviral medications.
Today, CFS has all the trappings of a 21st-century illness, with its own blogs, online support groups and archived research available for download.
“We’re all guinea pigs and will try any treatment that we hear about,” writes Garrett, a 31-year-old California man. “We know there isn’t any doctor you can go to who knows all the answers.”
Garrett started the blog so he could work at home. Despite his illness, he graduated from Boston’s Berklee College of Music, but he suffered a relapse eight years ago. He continues to post studies and CFS treatment theories through ChronicFatigueTreatments.com.
Judging from the literature—and there’s plenty of it—researchers are closer to understanding certain risk factors and how they trigger the slow or sudden onset of CFS, including environmental factors, physical trauma and infections. Some of the most pressing questions currently on the table: Is the illness set off by an infection that somehow erupts latent pathogens that were relatively harmless in childhood? Or is CFS caused by exposure to environmental agents and toxins like carbon monoxide and pesticides?
One study cited on the CDC’s website suggests that many forms of fatigue, including those caused by chemotherapy or radiation, can get worse with excessive rest. Instead, the patient is encouraged to get up and walk around the block, so to speak. The study is perhaps typical of CFS research in that it underscores a certain scientific finding—in this case, that fatigue has a real, molecular basis—and points to a need for a new medical model.
To put a face on the illness, the “Spark!” campaign offers a slew of publications, online profiles of CFS sufferers, and even a traveling photo exhibit. Award-winning author Laura Hillenbrand has been a particularly effective spokesperson, partly because of the tide of publicity that followed the release of the 2003 movie based on her award-winning book, Seabiscuit: An American Legend.
In interviews, Hillenbrand has shared her struggles to write and research the book in a tiny apartment while experiencing chronic vertigo, a symptom of CFS. She connects her illness to a bout of food poisoning she experienced when she was a sophomore at Kenyon College in Ohio.
For many of those with chronic fatigue syndrome, the likely potential for relapse prevents them from speaking out. They fear judgment from neighbors or acquaintances who perceive them as healthy, taking the stance, “If you don’t have it, you won’t understand it.”
Stephanie Mordan’s own reluctance to speak freely about her illness is somewhat based on her ability to stay active in public and “crash” later. She doesn’t like to dwell on the emotional trauma of those years when she was forced to drop out of art school and had only her mother as an ally. Mordan went through several doctors, two of whom misdiagnosed her symptoms as Lyme disease and depression.
Mordan never returned to college, but she married and had a son and a daughter, now 3 and 7. Today, she runs Cake Dreams out of her home and hopes her recent relapse won’t be misunderstood. “People may think I’m not capable of following through on their order,” she says.
In the end, Mordan has learned to embrace the attitude most people with CFS seem to take: She simply sees it as a major factor in determining her life’s course. Without CFS, she might not have met her acupuncturist, a woman she credits for giving her a positive outlook and a healthy, Zen approach to challenges.
“I’m one of the lucky ones,” she says.
1. It’s a real disease. Once dismissed as the “Yuppie flu,” chronic fatigue syndrome is difficult to diagnose, partly because it varies from person to person. Researchers believe that less than 20 percent of the CFS population has been fully evaluated.
2. It’s not contagious. CFS has been known to cluster in families, and research shows that genetic predisposition may be a factor.
3. Women are four times more likely than men to develop CFS. Statistics vary, but one advocacy group reports that women are more likely to become ill with CFS than AIDS, lung cancer, breast cancer or multiple sclerosis.
4. CFS has no cure. Despite a 20-year search for a cure, scientists have only determined certain risk factors—like stress combined with an acute infection. No diagnostic or laboratory tests exist for CFS. Under the most widely accepted guidelines, a diagnosis requires six months of unexplained fatigue and four out of the following eight symptoms: sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleep, impaired memory or concentration, and post-exercise malaise.
5. People with CFS can live active, normal lives. Symptoms of CFS can last for years, but most people can experience long periods of remission, especially by monitoring energy levels. Low-impact exercise, yoga and meditation are often recommended.
Chronic fatigue syndrome is a disease that has no cure, no specific cause and no diagnostic traits. Individuals with CFS are not alike, and no specific group is susceptible—but studies show a higher prevalence in women ages 40-59.
Fatigue from cancer or physical conditions like anemia only tells part of the story. Studies of this complex and debilitating illness have convinced scientists that fatigue has a real, molecular basis. Their findings may change the way we approach certain illnesses, or the onset of infections, in the future.