CFS: Dr. Klimas mentions brain inflammation in news

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Nov 25, 2006.

  1. mezombie

    mezombie Member

    Here's one of the best articles I've yet seen coming out of the CFS Awareness Campaign. Note in particular what Dr. Nancy Klimas has to say!

    U.S. campaign raises awareness

    BY NANCY MCVICAR
    South Florida Sun-Sentinel
    Posted November 24 2006


    Marly Silverman had a high-energy job as a financial consultant
    to a major U.S. bank, until she came down with a viral infection
    that she couldn't seem to shake. She was exhausted all the time,
    ran a low-grade fever and, lost weight, and then the neurological
    symptoms began.

    "I would be driving on I-95 and forget where I was going -- not a
    good thing," said Silverman, 52, of Pompano Beach. It took
    several months, but eventually she was diagnosed with chronic
    fatigue syndrome, the Rodney Dangerfield of diagnoses.


    For years, people who complained of the symptoms --
    exhaustion, joint pain, sleep problems, impaired memory,
    inability to concentrate -- were dismissed by some doctors as
    malingerers or hypochondriacs.

    This month, the federal Centers for Disease Control and
    Prevention launched a campaign to change that by educating
    both patients and physicians that chronic fatigue syndrome, or
    CFS, is a mysterious but serious disease sometimes triggered
    by a viral infection but with other unknown factors.


    CFS affects at least 1 million Americans, but many have not
    been diagnosed because most doctors have not been trained to
    recognize it, said Dr. William Reeves, chief of the chronic viral
    diseases branch at the Centers for Disease Control. Women
    are affected at about four times the rate as men, and nonwhite
    women are affected at a rate greater than white women, Reeves
    said. The age group most affected is 40 to 59.

    Reeves, who leads a CDC research group studying the
    syndrome CFS, said the illness follows a pattern of symptoms
    that can change over time, and that sometimes disappear and
    then come back. Spontaneous recovery is rare, he said.
    Treatment plans typically involve doctors asking patients which
    symptoms most affect their quality of life -- such as
    sleeplessness, joint pain, gastrointestinal complaints or
    depression -- and prescribing medications to ease those
    symptoms.

    "We also found that patients who get appropriate care early in
    their illness have a significantly better long-term health outcome
    than those who do not," Reeves said. "This underscores the
    importance of this campaign."

    Silverman said public service announcements readied for the
    campaign are very effective.

    "They show a woman in bed, very tired, and her husband and
    kids moving very fast, because that's the way we feel. Life goes
    by very fast and we can't keep up with it," said Silverman, who
    started an "empowerment group" called PANDORA to help
    other sufferers.

    Irwin Auster, who facilitates some of the meetings, said he
    sought help from a dozen different doctors for his unexplained
    physical pain, but none could figure out what was causing it or
    give him anything strong enough to take it away. He began
    making plans to stop the pain himself.

    "I was on the verge of ending my life, by sitting on the tracks and
    waiting for the train," said Auster, 64, of Boca Raton. Then he
    read an article about Dr. Nancy Klimas, a University of Miami
    School of Medicine clinician-researcher, who treats patients with
    symptoms like his.

    "I do owe her my life," said Auster said. "I really do."

    Klimas, who was in Washington for the launch of the CDC
    campaign, said research over the past 20 years is beginning to
    figure out the biological underpinnings of the syndrome, which
    she thinks is badly misnamed.

    "If it were called chronic neuroinflammatory disease, then people
    would get it," she said. "Up until now nobody's been willing to
    change the name, but now there's proof [that inflammation
    occurs in the brain.]

    "There's evidence that the patients with this illness experience a
    level of disability that's equal to that of patients with late-stage
    AIDS, patients undergoing chemotherapy, patients with multiple
    sclerosis."

    said Klimas is president of the International Association for
    Chronic Fatigue Syndrome, an organization of medical
    professionals and research scientists. Its next that will have its
    next research conference will be in January in Fort Lauderdale.

    "Historically, it's been the lack of credibility in this illness that has
    been one of our major stumbling blocks to making progress,"
    Klimas said.

    "Over the past 20 years, I've treated more than 2,000 chronic
    fatigue syndrome patients. I've seen patients who were angry
    and defiant, frustrated, trying to convince their physicians, their
    families, their friends that this is a real illness. I've seen other
    patients who hid their diagnosis because of the stigma attached,
    and suffered in silence."
    She and other investigators have shown that different types of
    cells within the immune system are abnormal either in number or
    their capacity to function in these patients. Klimas said the
    biological findings give credence to the disease, but much more
    research is needed.

    UM researchers, including Mary Ann Fletcher, have just been
    awarded new grants from the National Institutes of Health. to
    continue their work. One goal is to come up with tests to
    diagnose the disease in its different forms, Fletcher said.

    "We have fairly good reason to believe that CFS is not a
    homogeneous syndrome. There may be several subsets, and it's
    important to compare apples to apples. It's possible a treatment
    that would work for subset A would not work for subset B,"
    Fletcher said.

    Klimas and Fletcher are recruiting 150 new patients for a study
    that will assess them on days when they feel good and also
    when they're feeling particularly bad, so they can compare their
    blood samples for differences.

    "And if on a bad day they are unable to come to the clinic, we will
    send somebody to them to draw their blood," Fletcher said.

    Klimas said even though researchers still don't have all the
    answers, there are effective treatment strategies that do help
    patients.

    "There's no single treatment that fixes the illness, but there are
    treatments that do help significantly -- increasing the function of
    the patient, and allowing them to engage in normal activities of
    daily living," she said. "It's critical for patients and their health
    care providers to know that there is hope and that we can help."

    Nancy McVicar can be reached at nmcvicar@sun-sentinel.com
    or 954-356-4593.



    `````````````````

    http://www.sun-sentinel.com/news/local/southflorida/sfl-rxchronicbox24nov24,0,5548043.story?coll=sfla-home-headlines



    Chronic Fatigue symptoms
    ~~~~~~~~~~~~~~~~~~~~
    Posted November 24 2006


    Difficult Diagnosis



    Chronic fatigue syndrome can cause symptoms so severe that
    people cannot function normally. There is no simple test to
    diagnose the illness, but researchers, including a group at the
    University of Miami, are working on that and on how best to treat
    the syndrome.

    The U.S. Centers for Disease Control and Prevention says
    doctors should consider CFS in patients with six months or more
    of unexplained fatigue accompanied by other characteristic
    symptoms, including:

    Cognitive dysfunction, including impaired memory or
    concentration.

    * Exhaustion lasting more than 24 hours after physical or mental
    exercise.

    * Unrefreshing sleep, joint pain without redness or swelling, or
    persistent muscle pain.

    * Headaches of a new type or severity.

    * Tender lymph nodes or sore throat.

    Resources

    The CDC has more information at www.cdc.gov/cfs. A local
    patient group, PANDORA, or Patient Alliance for
    Neuroendocrine-immune Disorders Organization for Research
    and Advocacy, has a Web site: www.pandoranet.info, or call
    954-783-6771.

    - Nancy McVicar


  2. Mikie

    Mikie Moderator

    All along, we've been told that FMS/CFIDS is not an inflammatory illness but so many of us have improved with anti-inflmmatories. That we might have inflammation in our brains is a very interesting theory. I'm glad more research is being done.

    Love, Mikie
  3. mezombie

    mezombie Member

    I was curious about the research behind Dr. Klimas' statement, and managed to find the following. Unfortunately, the article itself is not available online.
    _________________________________________________________

    Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants
    CF SYNDROME, MC STRESS, B EFFECTS - Journal of Clinical Psychopharmacology, 2005 - psychopharmacology.com
    ... rat brain mast cells77 and is involved in both brain inflammation78 and ... Chronic fatigue
    syndrome: the need for subtypes. ... [Context Link]. 5. Klimas N. Evaluating ...

    ___________________________________________________________

    Full Citation:

    Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants.

    Guest Editorial

    Journal of Clinical Psychopharmacology. 25(6):515-520, December 2005.
    Theoharides, Theoharis C. BS, MS, MPhil, PhD, MD *+++; Papaliodis, Dean BS *; Tagen, Michael BS *; Konstantinidou, Aphrodite MD, DSc [//]; Kempuraj, Duraisamy PhD *; Clemons, Anthony BS *

  4. Redshadow

    Redshadow New Member

    Thank you mezombie!!! I LOVE Nancy Klimas!!!
    That was great!!!!!
    [This Message was Edited on 11/26/2006]
  5. Slayadragon

    Slayadragon New Member

    I wish there were more informtion in this article about the sorts of treatments that Dr. Klimas thinks might be helpful. does anyone know?

    I also wonder how many people at this point know who Rodney Dangerfield ("I don't get no respect") is. Although maybe since this article ran in florida, it's a bigger percentage of the population than in most places.

    I still vote for the name Neuroendocrineimmune Disease. I think it's obvious that most CFS patients have brain problems, but that's hardly the _only_ problem that seems to be of real importance.