News release re: CFIDS today

Discussion in 'Chit Chat' started by Lynna62, Jan 8, 2007.

  1. Lynna62

    Lynna62 New Member

    Please circulate. This is probably the most promising treatment that
    has ever been proposed and tried:

    New therapy for chronic fatigue syndrome to be tested at Stanford

    STANFORD, Calif. — A preliminary study suggests there may be hope in
    the offing for some sufferers of chronic fatigue syndrome with a new
    therapy being tested by researchers at the Stanford University School
    of Medicine.

    José Montoya, MD, associate professor of medicine (infectious
    diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have
    used the drug valganciclovir — an antiviral often used in treating
    diseases caused by human herpes viruses — to treat a small number of
    CFS patients.

    The researchers said they treated 25 patients during the last three
    years, 21 of whom responded with significant improvement that was
    sustained even after going off the medication at the end of the
    treatment regimen, which usually lasts six months. The first patient
    has now been off the drug for almost three years and has had no
    relapses. A paper describing the first dozen patients Montoya and
    Kogelnik treated with the drug was published in the December issue of
    Journal of Clinical Virology.

    "This study is small and preliminary, but potentially very important,"
    said Anthony Komaroff, MD, professor of medicine at Harvard Medical
    School, who was not involved in the study. "If a randomized trial
    confirmed the value of this therapy for patients like the ones studied
    here, it would be an important landmark in the treatment of this illness."

    Montoya has received a $1.3 million grant from Roche Pharmaceutical,
    which manufactures the drug under the brand name Valcyte, to conduct a
    randomized, placebo-controlled, double-blind study set to begin this
    quarter at Stanford. The study will assess the effectiveness of the
    drug in treating a subset of CFS patients.

    Montoya is speaking about his efforts at the biannual meeting of the
    International Association for Chronic Fatigue Syndrome in Fort
    Lauderdale on Jan. 11 and 12.

    Chronic fatigue syndrome has baffled doctors and researchers for
    decades, because aside from debilitating fatigue, it lacks consistent
    symptoms. Although many genetic, infectious, psychiatric and
    environmental factors have been proposed as possible causes, none has
    been nailed down. It was often derided as "yuppie flu," since it
    seemed to occur frequently in young professionals, though the Centers
    for Disease Control and Prevention says it's most common in the
    middle-aged. But to those suffering from it, CFS is all too real and
    its effects are devastating, reducing once-vigorous individuals to the
    ranks of the bedridden, with an all-encompassing, painful and
    sleep-depriving fatigue.

    More than 1 million Americans suffer from the disorder, according to
    the CDC. The disease often begins with what appears to be routine
    flulike symptoms, but then fails to subside completely — resulting in
    chronic, waxing and waning debilitation for years.

    Valganciclovir is normally used against diseases caused by viruses in
    the herpes family, including cytomegalovirus, Epstein-Barr virus and
    human herpes virus-6. These diseases usually affect patients whose
    immune systems are severely weakened, such as transplant and cancer
    patients. Montoya, who had used the drug in treating such patients for
    years, decided to try using it on a CFS patient who came to him in
    early 2004 with extremely high levels of antibodies for three of the
    herpes family viruses in her blood. At the time, she had been
    suffering from CFS for five years.

    When a virus infects someone, the levels of antibodies cranked out by
    the immune system in response typically increase until the virus is
    overcome, then slowly diminish over time. But Montoya's patient had
    persistently high antibodies for the three viruses. In addition, the
    lymph nodes in her neck were significantly enlarged, some up to eight
    times their normal size, suggesting her immune system was fighting
    some kind of infection, even though a comprehensive evaluation had
    failed to point to any infectious cause.

    Concerned about the unusual elevations in antibody levels as well as
    the swelling of her lymph nodes, Montoya decided to prescribe
    valganciclovir. "I thought by giving an antiviral that was effective
    againstherpes viruses for a relatively long period of time, perhaps we
    could impact somehow the inflammation that she had in her lymph
    nodes," said Montoya.

    Within four weeks, the patient's lymph nodes began shrinking. Six
    weeks later she phoned Montoya from her home in South America,
    describing how she was now exercising, bicycling and going back to
    work at the company she ran before her illness. "We were really
    shocked by this," recalled Montoya.

    Of the two dozen patients Montoya and Kogelnik have since treated, the
    20 that responded all had developed CFS after an initial flulike
    illness, while the non-responders had suffered no initial flu.

    Some of the patients take the drug for more than six months, such as
    Michael Manson, whose battle with CFS has lasted more than 18 years.
    The former triathlete was stricken with a viral infection a year after
    his marriage. After trying unsuccessfully to overcome what he thought
    were lingering effects of the flu, he had no choice but to drastically
    curtail all his activities and eventually stop working.

    During his longest period of extreme fatigue, 13½ weeks, Manson said,
    "My wife literally thought I was passing away. I could hear the
    emotion in her voice as she tried to wake me, but I couldn't wake up
    to console her. That was just maddening."

    Now in his seventh month of treatment, Manson is able to go
    backpacking with his children with no ill after-effects. Prior to
    starting the treatment, Manson's three children, ages 9 to 14, had
    never seen him healthy.

    Montoya and Kogelnik emphasized that even if their new clinical trial
    validates the use of valganciclovir in treating some CFS patients, the
    drug may not be effective in all cases. In fact, the trial will assess
    the effectiveness of the medication among a specific subset of CFS
    patients; namely, those who have viral-induced dysfunction of the
    central nervous system.

    "This could be a solution for a subset of patients, but that subset
    could be quite large," said Kristin Loomis, executive director of the
    HHV-6 Foundation, which has helped fund a significant portion of the
    preparatory work for the clinical trial. "These viruses have been
    suspected in CFS for decades, but researchers couldn't prove it
    because they are so difficult to detect in the blood. If Montoya's
    results are confirmed, he will have made a real breakthrough."

    "What is desperately needed is the completion of the randomized,
    double-blind, placebo-controlled clinical trial that we are about to
    embark on," Montoya said.

    People interested in participating in the clinical trial must live in
    the San Francisco Bay Area. More information about the clinical trial
    is available online at
  2. Cromwell

    Cromwell New Member

    Good article I hope you post this on the FM as well as CF message boards as people need to read it. TX Annie cromwell
  3. Lynna62

    Lynna62 New Member

    I posted it on the FM/CFIDS board first, but wanted to make sure you folks saw it too.

    Hope it helps alot of people!

  4. mrdad

    mrdad New Member

    Within the last year, I was in a support group with a
    Gentleman here in S.F. who at the time was being treated
    for CFS by Dr. Montoya. At that time he fealt that he
    had experienced 70% improvement after almost a 20 year

    At that time, he had mentioned the fact that Montoya was
    preparing to do an advanced more conprehensive study in
    the near future, I would suppose that this is it!

    I may look into this myself if transportation doesn't
    appear to be a problem for me! This would be a worth-
    while endeavor I would think.

    [This Message was Edited on 01/09/2007]
  5. rockgor

    rockgor Well-Known Member

    Exciting news. Gimme some of that stuff.
  6. boltchik

    boltchik New Member

    Not only does the article give true validation to the illness, but a hopeful solution also. I hope to hear more about it in the future as more testing is completed. Kim :)