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Chronic Fatigue Syndrome -- Learning to Cope

Thirteen-year-old Anna had been ill for months. The usually cheery middle schooler was dull and listless, plagued by constant migraines and irritated stomach. After the typical culprits of colds and flu, mononucleosis and school or relationship problems had been ruled out, her doctor started a battery of tests to identify the cause, while Anna and her family waited anxiously.

One by one, the results came in:

Fibromyalgia test—negative

Diabetes test—negative

Food allergy test—negative

And so it went, an ever-growing list of ailments Anna was found not to have. Every screening that came out clear was both a relief and a concern for Anna and her family. They were happy to know that cancer, Lyme disease and multiple sclerosis were not behind the disruption of Anna’s happy life of music, dance and youth group activities. But they felt further and further away from finding the root of her symptoms.

Only after Anna missed several weeks of eighth grade did her physician bring up the possibility of chronic fatigue syndrome. More and more tests confirmed that diagnosis in the only way possible: by eliminating every other potential disease.

Identifying chronic fatigue syndrome (CFS) is difficult because symptoms mimic conditions common to other illnesses—from stomach flu to Crohn’s disease. The Centers for Disease Control and Prevention (CDC) lists eight symptoms of CFS: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion exhaustion lasting more than 24 hours. At least four of the symptoms must be present over a duration of six months to qualify as chronic fatigue syndrome.

Anyone can get CFS, but women are four times more likely than men to develop it. Middle-aged adults are especially at risk, but all age groups are affected. Increasingly it is recognized that teenagers can develop the syndrome. DePaul University researchers estimate that 800,000 people in America experience CFS, but the Chronic Fatigue and Immune Dysfunction Syndrome Association of America believes that as many as 90 percent of people who have the syndrome go undiagnosed. The disease is difficult to nail down, and some doctors are hesitant to give a diagnosis of CFS. Some health care providers don’t believe CFS is a legitimate illness, while others search endlessly to find a different explanation for symptoms. But despite difficulties in diagnosis, early detection is as vital for CFS as it is for other illnesses. The longer CFS continues without attention, the more complicated treatment becomes, and the less likely it is for patients to experience full recovery.

Despite intense research over nearly two decades, the underlying cause of CFS remains unclear. Many different physical and psychological factors have been explored, but so far there is no smoking gun. Nevertheless, most evidence suggests abnormalities in the neurological, immune and endocrine systems of the body. Some evidence points to an infectious agent, but none of the likely culprits investigated—such as the Epstein Barr virus (the cause of infectious mononucleosis) and Candida albicans (yeast)—has been consistently associated with CFS. A subset of patients with CFS does show increased antibodies in the blood for a type of bacteria called C. Pneumoniae, and this group sometimes benefits from antibiotic treatment.

With no clear cause of CFS, to diagnose it doctors must rule out every other cause of the symptoms—meaning lots of tests and examinations, often by specialists. If another disease or illness that could cause such symptoms is present, that illness must be fully treated. Then, if symptoms persist, doctors will consider CFS. Thus, patients must generally wait months before receiving a diagnosis of CFS.

Anna’s diagnosis was, like the weeks of waiting, bittersweet. The constant headaches, brain fog, dizziness and sensitive stomach now had a name, and the frustration of searching for answers could end. However, chronic fatigue syndrome is not an easily treated illness. In fact, the CDC says that there is no cure, and while a few patients will recover and children sometimes outgrow CFS, the vast majority of individuals with CFS never go into full remission.

That is not as bad as it sounds, though. While at its worst CFS can prevent someone from working or carrying on daily activities, the severity of the illness changes from day to day and month to month. Many patients learn to manage their symptoms and avoid bouts of extreme sickness, although figuring out which treatments work and which lifestyle factors trigger the symptoms is sometimes a tricky task.

Treatment of CFS can be tenuous because symptoms vary from patient to patient and may change at any time. For instance, a patient who normally struggles with headaches may suddenly develop severe stomach problems. Researchers still hunt for a cause and a cure, but research dollars are also spent finding ways to manage symptoms of the illness.

Several medications are used to manage symptoms like pain and fatigue, but CFS patients are often very sensitive to....Continued in ABILITY Magazine

by Noelle Kelly

Centers for Disease Control and Prevention
www.cdc.gov/cfs

Chronic Fatigue and Immune Dysfunction Syndrome Association of America
www.cfids.org

International Association of Chronic Fatigue Syndrome
www.aacfs.org

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Chronic Fatigue Syndrome -- Learning to Cope

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