CHESTER, N.J. – At age 11, Brian Bernard earned straight A’s, played travel soccer and seemed able to name every bird in the Western Hemisphere.

Then in April 2005, he got the flu and never really recovered. He spent months in bed. At his worst, he could barely lift his head from the pillow, forcing his mother to spoon-feed him. He often slept 15 hours a day.

At one point, Brian could no longer read and forgot simple words. His mother, a physician, has a vivid memory of one day when he saw a pigeon.

“He said to me: “I know what that bird is – it begins with a “p.”‘ This was a kid who could have gone on “Jeopardy!’ and won the bird category,” said Donnica Moore, talking in the family’s home in Chester, where Brian’s ornithology books line the library shelves.

Brian’s diagnosis was one even his mother was not expecting: chronic fatigue syndrome.

The illness still raises eyebrows and skepticism. Some physicians doubt it exists. Yet the national Centers for Disease Control and Prevention now calls chronic fatigue syndrome a very real and debilitating condition – and a significant public health threat.

The center is funding a $4.5 million campaign to educate the public and physicians.

The disorder was first recognized in the early 1980s, when it was often dismissed as “yuppie flu,” since many of those stricken seemed to be hard-charging professionals. Two decades later, it is known CFS strikes previously healthy people, most of them adult women, but much else about it remains a puzzle.

There is no diagnostic test and no known cure.

Besides crippling fatigue, patients may experience “brain fog,” sleep disorders, muscle and joint aches, and tender lymph nodes.

Research emerging in the past two years has started to unravel some of the puzzle. Scientists have identified different genetic profiles for people with CFS.

The different genes deal with energy usage and the body’s ability to cope with stress, such as trauma and infection.

Other research has found abnormalities in blood pressure, blood volume to the brain and immune-cell activity in CFS sufferers.

“The scientific evidence has really come together,” said Suzanne Vernon, who has researched chronic fatigue at the CDC for 10 years.

The CDC estimates 1 million Americans have the syndrome and up to 80 percent of them have not been properly diagnosed.

Many sufferers are told their problems are imaginary. Some are accused of faking illness.

CDC Director Julie Gerberding said she wanted the campaign to “validate and understand the incredible suffering that many people and their families experience.”

CFS can come on gradually, though often the syndrome is kicked off by some “first domino” such as a viral infection, allergic reaction or stress, said Alan Pocinki, a Washington physician who has studied CFS at the National Institutes of Health.

“A lot of research is chicken-and-egg. We don’t know if the abnormalities we see are the result of CFS or the cause,” he said. He helps patients by treating symptoms, such as giving them medications for pain or insomnia. One study announced in January found a subset of patients responded well to anti-viral medications.

In Newark, Benjamin Natelson, director of the pain and fatigue center at UMDNJ-New Jersey Medical School, fears the disorder is particularly going undiagnosed in minorities.

Natelson is studying sleep disorders in CFS patients. “One hypothesis is that some people with CFS have a sleep disorder that just doesn’t let them rest,” he said.

To Pocinki and many other CFS researchers, the debate about whether they are dealing with a true illness is over.

“I think certainly there are physicians who don’t believe this exists,” Pocinki said. “These doctors are now out of the mainstream.”

Not everyone agrees.

Peter Manu, a professor of clinical medicine and psychiatry at Albert Einstein College of Medicine in New York, says the patients’ suffering is real, but he called CFS a collection of complaints.

“There is no evidence at this time that CFS is a physical or psychiatric disease,” he said by e-mail. “I’ve done research and seen the literature. I call it as I see it.”

Brian Bernard, now 13, has improved greatly in the past year, returning to school and soccer. He is a stellar student, articulate beyond his years. But sometimes he still loses words, his blood pressure fluctuates when he stands, and he has had relapses, even a bout with pneumonia.

“It’s like the ancient Greeks,” he said. “They did not understand lightning, but that doesn’t mean it didn’t exist.”

JM END CAMPBELL

(Carol Ann Campbell covers medicine for The Star-Ledger of Newark, N.J. She can be contacted at ccampbell(at)starledger.com.)

2007-03-08-CHRONIC-FATIGUE

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