What Ever Happened to Chronic Fatigue Syndrome?
New Attitudes, New Hope
While the XMRV studies haven't provided patients or their doctors with the missing piece of the puzzle, they have put CFS back in the spotlight to help make the disease "real" to physicians. In fact, a study last year from the CDC found that 41 percent of health care providers had made a diagnosis of CFS. And while 20 percent still agreed with the statement "I believe CFS is only in the patient's head," three-quarters of them disagreed with statements such as "CFS is not as big a deal as the media makes it out to be" and "CFS patients are just depressed."
New research also shows that counseling and graded exercise (activity that starts slowly and increases gradually) can help CFS patients feel better. One British study compared how well CFS patients responded to either cognitive behavioral therapy to help them cope with their symptoms, graded exercise, or specialist treatment alone. The results were encouraging: Fifty-nine percent in the therapy group, 61 percent in the exercise group, and 45 percent in the specialist group showed significant improvement. Of course, these treatments aren't cures, and the findings do not suggest that people with CFS are simply depressed or just have to get in better shape. Instead, they're tools that can be used as part of an overall treatment strategy in much the same way they're used for other chronic conditions, like heart disease and diabetes.
"There's no one-size-fits-all solution," says Dr. Bateman. "If you're diagnosed with CFS, the best you can do is try to get ahead of it with a program that eases pain, boosts stamina, and reduces stress." Finding a knowledgeable doctor to help you figure everything out is crucial. "A good primary care physician can diagnose CFS, or you can go to an immunologist or an infectious disease specialist," Dr. Klimas says. You can often get a list of doctors in your area from a local CFS support group; contact the Chronic Fatigue and Immune Dysfunction Syndrome Association of America at cfids.org. Joining a support group is a good idea, too. "The disease is isolating," says Kimberly McCleary, president and CEO of CFIDS. "When you connect with people who understand where you're coming from, it can make all the difference."
Treatment for CFS usually starts with exercise, therapy, and a balanced diet. Depending on the person, it may also include immune-boosting supplements, such as the antioxidant CoQ10, omega-3 fatty acids (found in fish oil), and vitamin B12. Nonsteroidal anti-inflammatories like ibuprofen may help reduce pain, and antidepressants can make sleep more restorative. A drug called Ampligen, intended to jump-start the immune system, is on the horizon. It's not specifically for CFS but clinical trials show it reduces fatigue and increases energy. The manufacturer has applied for FDA approval.Responding to Treatment
A CFS diagnosis doesn't mean all hope is lost: Five to 10 percent of patients go into total remission and 40 to 60 percent improve to the point where they can return to work and other activities, according to the CDC. But setbacks often follow periods of improvement, as was the case for DeAnn Starling. When she first got sick in college, she could barely walk from her bed to the bathroom. But with treatment the Murfreesboro, Tennessee, resident began to have more good days than bad. While it took her longer than normal to finish school, she graduated, went to law school, passed the bar, and worked as a lawyer. Then she started a family, raising two children and working on legal projects when she felt up to it. "I found a terrific doctor who helped me figure out when to push through the pain and when to stay in bed," says Starling, 47. Though the illness forced her to table work and cut back on daily activities for now, she has an upbeat attitude. "I think if my family feels loved, it doesn't matter if the dishes are dirty, the laundry piles up, or we have sandwiches again for dinner," she says. "I've accepted the fact that only half of what I plan to do will ever get done."
Shanley Crutchfield, a former athlete from Baltimore, has fared better. "I was a zombie at first," says the 25-year-old. "I took uppers to wake up and sleeping pills to fall asleep, painkillers for migraines and muscle pain, and antidepressants." With the help of a new doctor she got on a more tolerable and effective treatment plan and slowly began to improve. Today she works full-time in an engineering office, coaches youth soccer twice a week, and takes classes one night a week. "I'm one of the lucky ones," says Crutchfield. "I have to pace myself because when I do too much, my body knows it immediately. But I got my life back."