In the early ‘90s, Nitzie Whittam had an incredibly high-stress job, overseeing a major computer project at her company. For seven years, she felt more and more tired, and she blamed it on her job. Then in 2001, she had a hysterectomy. “After that it was like I couldn't get any energy,” she says now. “I was tired, but I also had major brain fog. I would sit at my desk for hours, just shuffling papers. At meetings, I couldn't concentrate on what people were saying. If I worked four full days a week, that would be unusual.” She suffered mystifying leg cramps and strange sore throats. Some days she couldn't stand up long enough to put on her makeup. Finally, she couldn't work at all. Doctors at the Mayo Clinic in Rochester, Minn., suspected she might have cancer, but tests were negative. She became so depressed after the Mayo doctors couldn't diagnose her condition that she contemplated “walking off the roof of the hotel building” where she was staying. Then, in 2003, Whittam, 53, was finally told she has myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome. In the ‘80s, skeptics called CFS the “yuppie flu” or “shirker syndrome.” But most medical experts today recognize it as a very real disease that afflicts some 1 million people each year. It is not psychological in nature or the result of hypochondria. Still, despite this acceptance, CFS is a tragically misunderstood syndrome. It is estimated that fewer than 20 percent of people who have the disease have been diagnosed correctly. “One thing that has been a barrier (to treating CFS) is that this disease doesn't fit neatly into one category,” says Kimberly McCleary, president and CEO of the CFIDS Association of America. “It's not a condition that affects only one organ or that one set of specialists would take care of. CFS crosses just about every body system and everywhere you look, there are abnormalities that are subtle. It challenges the system of medicine that so many people are comfortable with.” CFS is characterized by at least six months of profound, incapacitating fatigue that gets worse with exertion, be it physical or mental activity. Other defining symptoms include impaired memory or concentration, sleep problems, muscle and joint pain, headache, sore throat and tender lymph nodes. Some people recover with time, some go into remission at times. Some get progressively worse. The disease is four times more frequent in women than in men. Calling it mere “fatigue” is a gross understatement, says McCleary. “You hear people who have it saying, `This isn't a death sentence but it's a life sentence,”' she says. Moreover, labeling this disease as “fatigue” has been unfortunate. “That makes it sound like it's a lifestyle issue when it's really much more serious and complicated than that,” she says. “People don't understand what you're going through, because you look perfectly fine. They happen to see you in the grocery store and they don't realize the trip is going to put you back in bed for two or three days. This isn't a visible illness.” Exactly what causes CFS is a bit of a mystery; McCleary says it's unlikely to be only one thing. There are a number of factors, including a likely genetic predisposition or vulnerability, behind the disorder. “You couple that with an imperfect immune system, whether it's the result of chronic stress or a life event that sets your immune system into an unbalanced state,” explains McCleary. “Then a third factor would be some sort of triggering event - it can be a virus or bacteria or an environmental exposure or toxin or a major life stressor. It all leads to your body going into a state where it cannot reset itself. It's like a pinball machine that goes into tilt and then never works properly after that.” There is no blood test or any other definitive technique for diagnosing CFS, says McCleary: The diagnosis is typically made after excluding other conditions. There is, however, one common underlying symptom, she says: Sufferers are engaged and active one day, flat on their back (figuratively and, sometimes, literally) the next. A chief issue is finding the right doctor and advocating for your own treatment when you have CFS. Few doctors have the time or inclination to research and treat the nuances of CFS, according to Terry Westerman, a 57 year old CFS patient. Whittam, who now lives with her elderly mother, says the most frustrating thing is the reaction she gets from people when she tells them she has CFS. “People say, `Yes, I know. I feel tired all the time, too.' And you just want to throttle them. This is a constant sense of exhaustion that takes the glow off things.” - San Antonio Express-News __
