CDC: Chronic fatigue syndrome real, brutal

Discussion in 'Fibromyalgia Main Forum' started by darude, Nov 15, 2006.

  1. darude

    darude New Member

    CDC: Chronic fatigue syndrome real, brutal

    WASHINGTON, Nov. 3 (UPI) -- The CDC Friday launched a campaign to advance knowledge of chronic fatigue syndrome, a debilitating illness that goes widely underdiagnosed in the United States.

    Although scientists are still largely puzzled by CFS, which was formally named in 1988, a "convergence" of recent research has prompted the federal agency to make the science visible to the public, said Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention.

    "We are beginning to open the shroud of mystery that has clouded this illness for a long time," Gerberding said at a press conference in Washington.

    The campaign, which represents the government's first effort to raise CFS awareness, will print materials and broadcast a series of national public service announcements.

    A new Web site, www.cdc.gov/cfs, will also provide easy-to-read, basic information for patients and clinicians. Since physicians are often under-educated on CFS, the agency plans to distribute a "CFS Toolkit" for doctors and others in healthcare.

    CFS can cause prolonged fatigue muscle and joint pain, headache, unrefreshing sleep and recurrent sore throat, symptoms that cumulatively can be as severe and painful as renal failure, AIDS or multiple sclerosis.

    Epidemiological estimates suggest up to 1 million Americans may be affected. The condition weighs most heavily on minority women between 40 to 59, although men and adolescents are also at risk. It often occurs with other diseases, such as lupus, Lyme disease and often fibromyalgia, a chronic pain illness.

    Experts believe only 20 percent of CFS sufferers get diagnosed, partly due to the disease's lack of credibility and a lingering belief that it is psychological, and somehow imagined.

    "That debate raged for 20 years, and now it's over," said Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School.

    More than 3,000 research studies have now established CFS as a valid physiological illness.

    Yet diagnosis has remained cumbersome and complex. Doctors lack a specific "biomarker," or laboratory test, for CFS, Dr. William Reeves, the director of the CDC's CFS program, told United Press International.

    Doctors must sift through self-reported symptoms, accumulated over time, to diagnose a patient. With physician visits averaging less than 10 minutes, the slow, detail-driven process of CFS diagnosis may fall by the wayside. Many doctors are also uncertain about how to treat CFS, even though treatments are available to remedy some of the more life-complicating symptoms such as sleep loss and pain.

    In general, diagnosis is made when a patient has more than six months of unexplained fatigue, without another medical explanation, as well as four to eight other symptoms. CFS can occur immediately after an infection -- many people describe their symptoms as a never-ending flu -- or develop gradually, flaring up and disappearing over time. Those who diagnose their illness earlier usually have a more promising outcome.

    The two types of CFS also seem to differ genetically, which suggests there are varying risk factors for the two types of the illness, Reeves told UPI.

    Although its causes are still murky, scientists such as Reeves, who has led CFS research since 1992, have begun to understand its biological underpinnings.

    For instance, researchers have pinpointed some of the genes involved in sparking the illness. People with CFS seem to have genes that lessen their resiliency to both mental and physical stress.

    The HPA axis, a group of three organs that regulate hormones and control the body's reaction to both physical and mental stress, may malfunction in CFS patients. Studies have found certain hormones released by the HPA axis are deficient in CFS patients.

    Indeed, people with CFS often have other conditions suggestive of exposure to stressors, such as multiple chemical sensitivity and Gulf War syndrome. Women who have undergone chemotherapy for breast cancer are also a demographic commonly affected, Reeves said.

    Brain imaging studies also revealed CFS sufferers can have inflammation, reduced blood flow and impaired cellular function. The immune system seems to be in a state of chronic activation during CFS.

    In a recent study of CFS sufferers in Wichita, Kan., Reeves discovered many of the affected families were unemployed, and on average each family lost $20,000 in wages a year. When the Wichita study is generalized to the U.S. population, that would add up to $9.1 billion in lost earnings annually.

    "We're a long way to having an answer, but we have a good start," Reeves said.

    Many other studies on CFS are forthcoming, and several agencies, including the Department of Health and Human Services and the National Institutes of Health, are funding new research efforts.

    HHS also announced it will award seven new research grants totaling $4 million to various U.S. universities doing CFS research, said Dr. John Agwunobi, assistant secretary for health at HHS.

    The campaign should remind the public of the many Americans who suffer disabilities, often in silence, Gerberding said.

    "In addition to food safety issues and avian flu, we have urgent realities, problems that affect people every day -- and one of these urgent realities is CFS."

  2. Gothbubbles

    Gothbubbles New Member

    This article didn't actually suck! Wow!
  3. ulala

    ulala New Member

    Thanks for posting this!

    My favorite sentence is that CFS "cumulatively can be as severe and painful as renal failure, AIDS or multiple sclerosis". THEY GOT THAT RIGHT!!
  4. ikumdo

    ikumdo New Member

    UUUHHHH........I just came from the url for the cdc posted on this thread and I didn't see anything in the information that I read that suggested that cfs can be as dibilitating AIDS.It mentioned renal failure and multiple sclerosis but nothing about AIDS. So if the cdc did actually write that somewhere whoever began this post, I would like for you to specifically point to the area in the cdc's website where they wrote that.
  5. justjanelle

    justjanelle New Member

    See paragraph 6 on the article at the top of this thread for the AIDS statement.

    Best wishes,
    Janelle
  6. foxglove9922

    foxglove9922 New Member

    Sorry to add a little different take on this article although I primarily agree with most of what was said, but, what sticks out in my mind is $$$$$$ lost due to PWC who cannot work.

    Why now? Why now is the CDC taking such an active approach to this illness..........loss of earned income? years of cover-ups? worldwide research that makes the CDC look like an agency functioning in a third world country when it comes to CFS?

    Just wanted to throw out another take on this.

    Best wishes to all and who cares where the answer is......I just hope it comes soon.... :)

    Foxglove
  7. joeb7th

    joeb7th New Member

    That down-play this disease.
  8. fight4acure

    fight4acure Member

  9. ikumdo

    ikumdo New Member

    I read what's on this page but that is not the information on the CDC's page. So what I'm asking, I do I not know that the information here has not been subjected to someone's personal opiniion. I say again that information is not at the link post on this page that leads to the CDC's page.
  10. mezombie

    mezombie Member

    I believe this statement was made during the Nov. 3rd CDC press conference on CFS, and was probably picked up by the UPI reporter.

    Here's the link to the transcript of the conference:

    http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=36410

    The transcript is really worth reading!
    [This Message was Edited on 11/16/2006]
  11. balletdancer74

    balletdancer74 New Member

    Hi there,

    I am also beyond annoyed that it took the CDC THIS long to finally admit that "CFS" (I hate that acronym as it does not accurately describe what we have)/M.E. is a REAL illness and not a mental illness.

    What really gets me is that the CDC was allocated I think about $4 million dollars a few years ago, and it "fell through the cracks" to put it mildly. Nothing was done so it seemed. I have a feeling the CAA had something to do with it too. I'm more of an NCF supporter.

    The biggest "beef" I have is with Dr. William Reeves, the psychiatrist. HE has been the one who has said over and over again that we are suffering from a mental illness. And now he acts like he NEVER thought that at all. What a hypocrite. I wouldn't send a PWME or even someone who is mentally sick to him as he seems really pompous and incompetent.

    A psychiatrist shouldn't even BE on the "committee!"

    Ok - I need to breathe or I'll trigger a head pain attack. lol I'm not kidding...

    We're getting there...It's the U.S.'s fault (Cheney, etc.) for naming what was already known as M.E. later CFS. What a mistake!

    But we need to look ahead...

    Ok - I've written a soliloquy... :)

    Best,
    Leeza