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Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Summer, Oct 13, 2009.

  1. DHwCFS

    DHwCFS Guest

    I Respectfully Reserve the Right to Be Optimistic

    I have been ill with CFS for 18 1/2 years. I have endured all the dismissal and denial that has been described so well in this forum. Now, it is very disappointing to have medical professionals dismiss the new XMRV research before seeing where it leads. Based on the abysmal record of everyone in the past who should have been supporting and helping CFS patients, I expect pessimistic medical professionals to at least take a wait and see attitude concerning research regarding XMRV and it's relationship with CFS. To immediately deny any chance of success with the XMRV research reminds me too much of the doctors who so quickly said: "CFS is not a real physical illness". Since we don't know what causes CFS, let's remain open to all possible causes including the very real possibility of cause by XMRV. Let the needed research take place. If it shows XMRV is not the cause, we will accept that disappointment the same way we have accepted all the other disappointments along the way. Until then, I reserve the right to be optimistic.
  2. _Kim_

    _Kim_ Guest

    Another article from RGJ

    Hundreds request test for retrovirus

  3. _Kim_

    _Kim_ Guest

    Irish Independant

    Are you really, really tired? It's not all in your head. . .
    Often dismissed as hypochondriacs, ME sufferers have been vindicated by science, says Susan Daly

  4. Summer

    Summer Senior Member

    Chronic fatigue syndrome, cancer linked to new virus

    "A newly identified virus has been found to be linked to chronic fatigue syndrome and might also provide clues about how to prevent prostate cancer, according to a report this month in the journal Science. Called XMRV, the virus is transmitted in blood and body fluids and might be a significant public health threat."

    "XMRV, short for xenotropic murine leukemia virus-related virus, affects the immune system. It exists in blood and body fluids and is readily transmitted.

    Chronic fatigue syndrome sufferers relatives who had been diagnosed with neuroimmune diseases such as atypical multiple sclerosis, fibromyalgia and autism also tested positive for the virus, though these data were obtained after the publication and are still preliminary."

    "Researchers continue to seek answers to many unanswered questions about the virus, including how it got into the human population, how it acts to cause disease and whether the virus alters the risk of cancer development in people who have chronic fatigue syndrome."
  5. leelaplay

    leelaplay member

    Slanted Science Oct 11, 2009

    Levi found this article,

    Chronic Fatigue Syndrome (ME) Caused By Virus Associated With Prostate Cancer

    in Slanted Science, delivers daily science news articles, with a touch of humor

    There's a good rendering of xmrv

  6. leelaplay

    leelaplay member

    The New Yorker Oct 15 09

    gracenote found this article in the New Yorker - Back Issues: Laura Hillenbrand
    an interview with Laura Hillenbrand, including her reaction to the xmrv news

  7. Summer

    Summer Senior Member

    Top scientists to meet at Cleveland Clinic on trail of XMRV, a suspect in prostate cancer

  8. leelaplay

    leelaplay member

    WCRN Nov 10 '09

    WCRN Tuesday Checkup: In Search of a Cause of Chronic Fatigue Syndrome

    Strange to me - a 3 minute radio interview with the reporter, Angela Townsend, covering the Cleveland Institute meeting for the Plain Dealer

  9. DHwCFS

    DHwCFS Guest

  10. Sing

    Sing Senior Member

    New England
    Language Translation Tool

    From a post by Kim

    "XMRV news in other languages: All I do is copy the URL into Google Translator, select the languages and it does a pretty good job of providing an English translation."
  11. _Kim_

    _Kim_ Guest

    Infectious Disease Alert

    Chronic Fatigue Syndrome Could a "Stealth Virus" Be Lurking? by John F. Joseph, MD, FACP, FIDSA, FSHEA, Associate Chief of Staff for Education, Ralph H. Johnson Veterans Administration Medical Center; Professor of Medicine, Medical University of South Carolina, Charleston, is Associate Editor for Infectious Disease Alert.

  12. misskoji

    misskoji Guest

  13. _Kim_

    _Kim_ Guest

    Here is a link to the first page of the article: A Big Splash From an Upstart Medical Center

  14. Summer

    Summer Senior Member

    Could a "Stealth Virus" Be Lurking?

    From Infectious Disease Alert

    Abstract & Commentary

    By John F. Joseph, MD, FACP, FIDSA, FSHEA,
    Associate Chief of Staff for Education, Ralph H.
    Johnson Veterans Administration Medical Center;
    Professor of Medicine, Medical University of South
    Carolina, Charleston, is Associate Editor for
    Infectious Disease Alert.

    Dr. John is a consultant for Cubist, Genzyme, and
    bioMerieux, and is on the speaker's bureau for
    Cubist, GSK, Merck, Bayer, and Wyeth.

    Source: Lombardi VC et al. Science. 8 October 2009
    (10.1126/science. 1179052).

    It has been known for years that patients with
    chronic fatigue syndrome (CFS) have a defect in a
    major antiviral pathway, the 2-5A/RNase L pathway.

    The RNaseL produces non-specific viral cleavage and,
    thus, protects us from many viral infections (innate

    Defects in this pathway not only lead to
    susceptibility to viral infections but may also
    increase our susceptibility to tumor development.

    The RNaseL gene, called Human Prostate Cancer 1
    (HPC1), has a variant R462Q related to a potential
    etiologic agent of prostate cancer, a novel human
    retrovirus, xenotropic murine leukemia virus (MuLV),
    named XMRV.

    So, it was by a bit of serendipity that a group of
    workers headed by several from the Whittemore
    Peterson Institute in Reno, Nevada, asked if XMRV
    could be associated with CFS.

    What led to any rationale connection between
    prostate cancer and CFS is not clear, but the
    question led to a series of experiments that
    culminated in a very recent publication showing an
    association between the presence of this retrovirus
    in the peripheral blood mononuclear cells (PBMCs) of
    patients with CFS.

    We are dealing here with intricate science that surely
    took these 13 scientists and a host of technicians
    years to produce. Yet the paper contains astounding
    findings that I'll try to summarize succinctly, for
    besides the eight primary article pages from Science
    Express, there are 18 additional pages of
    "supporting" materials that also contain fascinating

    Here is what the paper reports.

    In 101 banked samples of PBMCs, 67% (68) were
    positive for a XMRV gag sequence. Next, seven of 11
    PBMC CFS samples held at the Cleveland Clinic were
    shown to have XMRV gag plus env. Only 3.7% of
    PBMC DNA from healthy controls had XMRV gag when
    tested by PCR.

    Amazingly, those gag and env sequences were nearly
    identical to those from XMRV from prostate
    cancer-associated strains (PLoS Pathol.

    Full-length SMRV from two patients differed from
    prostate cancer strain VP62 by only six nucleotides,
    showing again a > 99% identity between the CFS
    and prostate cancer XMRV.

    A phylogenetic comparison of six isolates from
    CFS/Prostate cancer showed them to be significantly
    different from other murine leukemic viruses.

    In all, 50 other isolates of MLV were used to make
    the neighbor-joining trees. The suspected closest
    relatives were other xenotropic murine viruses (Xmv
    15-19 and Xmv 10, 13, 16) and polytropic (Pmv) plus
    modified polytropic (Mmpv) viruses, which were in
    fact very removed genetically from XMRV.

    Next, it was shown that several antibodies with
    "novel viral specificities" all reacted with VP62 XMRV
    proteins when grown in several cell lines, including a
    line called LNCaP of prostate cells that are known to
    permit infection with MXRV.

    Flow cytometry of activated lymphocytes also
    showed that 19 of 30 PBMC CFS samples reacted
    with antibodies to MLV P30 Gag and other MLV
    proteins whereas PBMCs from normal patients were
    negative, for an odds ratio of 54.1. (confidence
    intervals of 23.8-122).

    So, there is a non-random association of CFS PBMCs
    with XMRV. Both activated T and B cells from CFS
    were infected with XMRV.

    The next experiment was quite ingenious. PBMCs
    from CFS patients were co-cultured with LNCaP cells,
    the ones defective in RNaseL pathways.

    The LNCaP cells became infected, as shown by
    presence of XMRV gag and env proteins and by the
    presence of whole virus, as seen by electron
    microscope both at the time of infection and upon
    release. The electron micrographs are quite

    The same type of infectivity was also seen when only
    plasma from CFS patients was applied to LNCaP
    cells. Thus, cell-associated and cell-free virus seems
    to be infectious, at least to some cell lines.

    Finally, it was shown that 50% of plasma samples
    from patients with CFS have a humoral response to
    XMRV, demonstrated by presence in flow cytometry
    assays of antibodies to a viral env closely related to
    XMRV env.


    It was courageous of Science to publish this paper
    because there are obvious epidemiologic data
    missing from the report.

    Still, patients with CFS can clearly see from this
    article the sophistication and dedication of scientists
    studying CFS, giving them hope that there will be
    some etiologies discovered in the near future.

    Indeed, when Robert Suhadolnik and colleagues at
    Temple University School of Medicine described the
    defects in RNaseL in the mid 1990s, the newer
    methods in retrovirology were just emerging so, in a
    sense, these new studies had to await the
    sophistication that has come with laboratory
    advances in the HIV/AIDS era. Good science
    (methodology) begets better science.

    Esteemed Professors John M. Coffin and Jonathan P.
    Stoye of Tufts University wrote an accompanying
    editorial in the issue of Science Express.

    They emphasize that the gammaretroviruses of mice,
    including endogenous MLVs, have given us much
    understanding of cancer pathogenesis; no such
    association has been made in humans until XMRV
    was discovered in prostate cancer tissue only three
    years ago.

    This work will have its critics. One concern is
    laboratory contamination with MLV.

    It is very unlikely that laboratory contamination freed
    the XMRV into human cell lines. CFS PBMCs and
    prostate cancer patients come from very disparate

    Indeed, the patients at the Whittemore Peterson
    Institute also come from diverse geographies and,
    except for their common diagnosis of CFS, have little
    in common.

    That fact makes it even more remarkable that out of
    nearly 8000 nucleotides in XMRV-a retrovirus only
    about 30 show variation.

    That lack of genetic variation for XMRV lies in great
    contrast to the huge variation we are used to seeing
    in HIV, suggesting that XMRV has recently
    descended from a common ancestor.

    Drs. Coffin and Stoye in their editorial also focus on
    the 3.7% of XMRV positivity in normal PBMCs and
    non-cancerous prostate tissue. If this rate were to
    hold up in studies from other geographic regions of
    the world, that would suggest that at least 10
    million people worldwide harbor the virus and
    perhaps are more susceptible to a wide variety of full
    expression of the retroviral infection.

    As one of a group of physicians who has recognized
    and managed patients with CFS for many years, my
    bias is to believe the validity of these current data.

    Yet, many theories about the cause of CFS have
    come and gone. CFS patients are always looking for
    new hope.

    Indeed, an article in the New York Times of October
    13 by Denise Grady speaks to thousands of patients
    already clamoring to be tested for the new virus.

    Of note also is that the Whittemore Peterson
    Institute was founded by parents of a young woman
    with CFS, so the data from Whittemore need to be
    verified in additional cohorts of CFS patients.

    Nevertheless, the passion of physicians like Dan
    Peterson himself, and others in that kindred, has
    driven the science of CFS.

    Steadfast organizations like our national CFS
    foundation, CFIDS ( , and many state
    CFS organizations continue to sponsor patients and
    programs that demand a balanced scientific playing
    field which in part has led to the quality of work
    demonstrated in the paper by Lombardi et al.
  15. leelaplay

    leelaplay member

    152 Nov 12 09 video

    Study suggests link between virus XMRV and chronic fatigue syndrome: a Living Well video

    By Plain Dealer guest columnist
    November 12, 2009, 5:45AM
    Video: Cancer biologist Robert Silverman of the Cleveland Clinic discusses new research that could lead to a breakthrough in treatment for chronic fatigue syndrome

  16. JillBohr

    JillBohr Senior Member

    Columbus, OH
  17. condra


  18. Sing

    Sing Senior Member

    New England
    Fantastically good article, I felt. You said it all from my perspective. I hope you post this link in Cort's thread on media links no discussion so that more here will read it. Thank you for this "kick ass" reporting.

  19. Sing

    Sing Senior Member

    New England
    My goof

    God, brain fog, that is the thread we are on!
  20. bananaman


    Bognor UK

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