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Trauma

Chronic Fatigue Syndrome: More Research Backs Up Patients

For years, doctors told patients they were just out of shape and scared.

Researchers at Georgetown University Medical Center have found changes in brain chemistry 24 hours after riding a stationary bike for 25 minutes that they consider a molecular signature for chronic fatigue syndrome.

Chronic fatigue syndrome was dubbed "psychosomatic" by many until a couple of years ago and sometimes considered a reaction to early trauma.

The turning point came after an Institute of Medicine review of 9,000 articles over 64 years of research. That review debunked the trauma idea (though people with the illness may very well have trauma, it's not clearly a cause.) The bottom line is that no one knows the causes of this illness, which may affect up to 2.5 million Americans.

The most notable symptom is crashing after a mental or physical stress. You might feel wiped out for hours, days, or weeks, no matter how much you rest — an uncommon symptom in other illnesses.

For years patients were told to exercise their way out of the problem, building up slowly (“graded exercise”), perhaps with the help of a cognitive behavioral therapist. The theory, dating back to the 1980s, was that they fell out of shape and then became irrationally afraid of exercise, in a bad feedback loop. We all know it can be hard and discouraging when you try to get moving again.

But chronic fatigue syndrome is much worse than feeling out of shape. The Centers for Disease Control and Prevention dropped the graded exercise recommendation this summer, under pressure from the chronic fatigue syndrome community. In large surveys, patients reported that even careful exercise programs made them worse.

The latest news about a brain chemistry pattern is part of a wave of research from Stanford, Columbia, Cornell, and elsewhere indicating that the syndrome indicates a number of bodily dysfunctions.

Scientists have also argued that the largest study of the illness, and its conclusion that exercise-plus-therapy helped patients, was full of “unacceptable” flaws. The National Institute of Health launched a big study this spring, looking for a better understanding of the illness and possible treatments.

What is chronic fatigue syndrome?

There is no blood test for CFS. It often begins after a virus, but it is not a chronic infection with the Epstein-Barr or mononucleosis viruses. Scientists call it “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).” Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) were names given to two well-documented cluster outbreaks of a clinically similar illness in London in 1955 and in Nevada in 1984.

The condition seems to run in some families and may involve a vulnerability in the immune and circulatory systems as well as the adrenal glands.

The syndrome often shows up in the teens but can affect small children and is much more common in girls. It also can arrive in your thirties.

Approximately 60 percent of teens with ME/CFS have joint hypermobility, compared to approximately 20 percent of healthy adolescents.

So far, there’s no clear way to predict how long it will take to get over the problem — but people do. People who develop symptoms young have the best prognosis. In a follow-up study of nearly 700 young people who considered themselves recovered, the illness lasted anywhere from one to 15 years. By 5 years, 60 percent reported recovery, and by 12 years, 88 percent did. But they may have had to cut back on their activity and have persistent milder symptoms.

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