CFS Article from Chicago Tribune

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 12, 2007.

  1. Slayadragon

    Slayadragon New Member

    This is an article that ran in the Chicago Tribune today.

    **

    CDC: 1 million have chronic fatigue
    Health agency works to educate doctors on advances in
    research

    By Carol Ann Campbell
    Newhouse News Service
    Published March 12, 2007


    CHESTER, N.J. -- 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."

    - - -

    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

  2. dononagin

    dononagin New Member

    Thank you for sharing - Bump for more to see!
  3. victoria

    victoria New Member

    While this article is good in that it takes CFIDS/FM seriously, I have to wonder if the child has been tested for possible causes like epstein-barr or lyme...

    especially since he is NJ, and also because so many cases of lyme only have the flu symptoms and no rash.

    best,
    Victoria

  4. cherylsue

    cherylsue Member

    Thanks for posting the article. I'm wondering on what page it appeared? The front page? Somewhere else?

    Thanks,
    CherylSue
  5. AquariusGirl

    AquariusGirl New Member

    I really enjoyed it and contemplated going to the center where Dr. Natelson works but found it to be not a good fit for me. I hope we can all figure this disease out and get better for good!