What Ever Happened to Chronic Fatigue Syndrome?
The Diagnosis Dilemma
Karen Burroughs just couldn't bounce back from a bout of the flu. The Orlando, Florida, personal trainer knew that something was seriously wrong. Previously able to do leg presses with 200 pounds, she could barely move a broom across her kitchen floor. "I was so exhausted. No matter what I tried to do, it felt like pushing a stroller through sand," she says. Plus she had achy joints, digestive problems, heart palpitations, and panic attacks. "Concentrating long enough to balance my checkbook or follow a simple recipe was impossible. Even watching TV was tough because I couldn't keep track of the plot of a show." Burroughs called her doctor, who ordered numerous tests that showed nothing abnormal. Finally he gave her a prescription: Get a hobby. "To hear such a flippant response from someone who had known me for years made me furious," she says. "My symptoms were not psychological." Still, it took a year and five doctors for Burroughs to get a diagnosis: chronic fatigue syndrome (CFS).
That was 16 years ago. And while these days it's possible to find a doctor with a less dismissive attitude, people with symptoms like Burroughs's still face big challenges as they try to get an answer to the question "What's wrong with me?" Experts estimate that at least a million people in the United States suffer from CFS, most of them women ages 40 to 59. But studies show that only 16 to 20 percent of CFS patients have sought medical care and received a diagnosis, according to the CDC. On top of that, there is no cure.
Some CFS advocates blame a medical establishment that fails to take women's complaints seriously for the fact that the disease is so misunderstood. "Patients often tell me that their previous doctor said they'd feel better if they dyed their hair or got a new boyfriend," says Nancy Klimas, MD, a professor of medicine at the University of Miami's Miller School of Medicine who specializes in CFS. "This is a very real illness and unless you have it, you can't understand how incapacitating it is."
To be fair, it's a complex disease. The symptoms are numerous and vague and mimic those of other conditions. The primary sign? A deep exhaustion that remains steady or waxes and wanes for six months. "This isn't everyday tiredness. It's profound fatigue that severely impacts your life," says Lucinda Bateman, MD, director and founder of the Fatigue Consultation Clinic in Salt Lake City. And nothing seems to help -- not sleep, stress management, or a vacation.The Diagnosis Dilemma
For a CFS diagnosis, you need that degree of fatigue plus four of the following symptoms for at least six months: substantial difficulties with memory or concentration, severe headaches, muscle and joint pain, chronic sore throat, feeling wiped out after even slight exertion, unrefreshing sleep, and tender lymph nodes. Some people may also experience trouble speaking, dizziness, and irritable-bowel issues.
The severity of the symptoms varies from person to person, although even those with mild CFS can struggle with normal activities like walking up a flight of stairs or reading a novel. And they often feel worse after making the effort. For about 25 percent of people the disease is disabling -- they're unable to leave the house or even get out of bed. "I feel like I'm under heavy sedation," says Cherice David, 40, who lives in Davis, California, and has been housebound for much of the eight years that she has had the disease. "You hear about brain fog, but for me it's more like brain mud."
People with CFS are also often put in the position of justifying why they can't just snap out of it, perhaps since the name of the condition makes friends and coworkers think that all they need is more sleep. "Since everyone's tired and they're still able to go to work and function, they wonder why you can't," says Jane Luft, a former billing manager in a St. Louis ophthalmology office who got sick 13 years ago at age 35. "I constantly had to explain that this is different. I felt one step away from a coma."
One of the main reasons doctors miss or misdiagnose CFS is quite simply that experts don't know what causes it; there are no scans, blood tests, or other ways to positively identify the disease. "Chronic fatigue syndrome remains an illness defined by a set of symptoms," says Dr. Bateman. Determining if someone has CFS is a time-consuming process that involves ruling out other conditions, such as depression, lupus, rheumatoid arthritis, sleep apnea, and underactive thyroid.Searching for a Cause
Over the years experts have pointed to many possible triggers for CFS: viruses such as Epstein-Barr, Lyme, and West Nile; hormonal system disorders; even psychological factors. They were all pretty much ruled out. Then two years ago a study in the journal Science linked CFS to a retrovirus called XMRV, giving patients and doctors hope that a test, and maybe even a cure, were imminent. But this spring three carefully designed studies showed that there is no connection.
All three reports suggested that the results of the original study were likely due to lab contamination, and the two studies that looked for XMRV in CFS patients' blood failed to find any trace of the virus. "The question is now completely settled, and we should move on and find a real cause and good treatment for CFS," says Jay A. Levy, MD, professor of medicine at the University of California, San Francisco, who is a researcher involved with one of the recent studies. He believes the answer may lie with the immune system. "When you have a cold or the flu, it's not the virus that makes you miserable, it's the by-products your immune system produces as it fights against it. If that becomes chronic, you have something that feels very much like CFS," he says. "Many different agents -- like a virus, an allergen, or a toxin -- could cause this response." It's likely that in CFS patients, the immune system continues to overreact, causing symptoms even after the trigger is gone. And there is still tremendous scientific interest in whether viruses, either known or waiting to be discovered, are possible triggers, says Dr. Klimas.