Something as bad as not feeling well is having people think you are faking your symptoms. Until now, that's been a problem for many patients with chronic fatigue syndrome. Though the illness can virtually incapacitate some people, it is characterized by "mushy" symptoms like fatigue, dizziness, muscle aches, and painful joints - - not easily confirmable signs like a chicken pox rash or a gashed finger. During a spate of cases in the 1980s, skeptics even called the illness "yuppie disease" because it seemed to favor young educated professionals, who perhaps have more time and resources to devote to hypochondriacal explorations.
"Chronic fatigue has been a puzzle," says Hopkins pediatrician Peter Rowe. "Nobody had a good grasp of why it developed or for the basis of its symptoms. Some felt it was largely psychiatric because the list of symptoms was so huge."
Now, a series of studies conducted by Rowe and others at Hopkins may exonerate those patients. The research links chronic fatigue syndrome with a nervous system disorder called neurally mediated hypotension.
In this disorder, explains Rowe, the communication between the heart and the brain is abnormal. Normally, when a patient sits or stands, the brain sends a message to the heart telling it to pump more blood throughout the body. But in patients with neurally mediated hypotension, the reverse occurs. Blood pools in the feet, and blood pressure drops precariously low. Patients often faint. "Some can't even stand in line at the grocery store, or sit and type," Rowe says. Following an episode, patients are often extremely fatigued - - just as occurs in chronic fatigue syndrome - - which suggested to Rowe and his colleagues that perhaps there was a connection.
So the investigators tested a group of chronic fatigue patients using a tilt table, a device that is also used to diagnose neurally mediated hypotension. Patients lie flat on the table for a few minutes, and then are tilted to a 70-degree upright angle for 15 minutes or longer. For patients with neurally mediated hypotension, the change in angle makes their blood pressure plummet; many faint after just a few minutes.
That's just what the Hopkins team observed in seven adolescent patients with chronic fatigue symptoms. In the March 11 Lancet, Rowe, pediatrician Hugh Calkins, and Issam Bou-Holaigah, a pediatric cardiology fellow, report that during the tilt portion of the test, all seven of the patients felt lightheaded and fatigued, and two fainted for the first time. All patients had a dramatic drop in blood pressure; the average drop was from 105/64 to 65/40.
"We want to stress that we don't think neurally mediated hypotension is a cause of chronic fatigue syndrome, but is a cause of its symptoms," says Calkins. "For whatever reason, the reflex is triggered," causing a sudden drop in blood pressure. "If it is triggered enough, patients get symptoms of chronic fatigue." But something else is also going on to trigger the illness, he says.
An agent such as Epstein Barr virus (a virus believed to cause mononucleosis, which has also been proposed as a cause of chronic fatigue syndrome), for example, could be a trigger.
The investigators also report that four of the seven adolescents eliminated or significantly reduced their symptoms through treatment, which involves increasing salt in the diet and taking medications that expand blood volume. From further preliminary studies, the scientists conclude that about a third of chronic fatigue patients can resolve their symptoms and another third significantly reduce symptoms through such treatment.
Rowe says the Lancet report attracted a lot of attention among patients who have been desperately seeking an explanation for this illness, which affects about 10 out of every 10,000 people, according to one estimate. "I've had 20 to 30 contacts a day from people on e-mail on this," says Rowe. "People don't want to wait for the results" to start treatment.
Since their initial study, the researchers observed similar results in adult patients, which they reported at meetings in May.
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