At age 11, Brian Bernard earned straight A’s, played 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 no longer could 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 wasn’t 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 calls chronic fatigue syndrome a very real and debilitating condition–and a significant public health threat.
The center is funding a $4.5million campaign to educate the public and physicians about CFS.
The disorder was first recognized in the early 1980s, when it often was dismissed as “yuppie flu” because many of those stricken seemed to be hard-charging professionals. Two decades later it is known that 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.
Mystery begins to unravel
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 use 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. “You see these people, and they look normal except for their stories, which are sad and devastating. What’s wrong is chemical and inside.”
Vernon said the new research prompted the awareness campaign, which the CDC announced in November.
The CDC estimates that 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.
Syndrome’s trigger varies
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,” said Pocinki, who helps patients by treating symptoms, such as giving them medications for pain or insomnia.
One study announced in January found that a subset of patients responded well to anti-viral medications.
Dr. Benjamin Natelson, director of the pain and fatigue center at New Jersey Medical School, suspects 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.
Not everyone agrees that CFS is a distinct illness.
Peter Manu, a professor of clinical medicine and psychiatry at Albert Einstein College of Medicine in New York, said the patients’ suffering is real, but he called CFS a collection of complaints.
Brian Bernard, now 13, has improved greatly in the past year, returning to school and soccer. He is a stellar student. 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.”
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Syndrome symptoms
Chronic fatigue syndrome has symptoms lasting at least six months, including:
– Difficulties with memory and concentration
– Problems with sleep
– Persistent muscle pain
– Joint pain (without redness or swelling)
– Headaches
– Tender lymph nodes
– Increased fatigue and sickness after exertion
– Sore throat
It’s important to tell your health-care professional if you’re experiencing any of these symptoms. Only a professional can diagnose chronic fatigue syndrome.
Source: Centers for Disease Control and Prevention
