Hunter-Hopkins 'take' on CDC XMRV

Discussion in 'Fibromyalgia Main Forum' started by victoria, Jul 6, 2010.

  1. victoria

    victoria New Member


    Hunter-Hopkins ME-letter
    July 2010
    Hunter-Hopkins Center, P.A.
    7421 Carmel Executive Park Drive, Suite 320
    Charlotte, North Carolina 28226
    Tel. (704) 543 9692 · Fax. (704) 543 8547

    XMRV Update: The Controversy
    Research Opportunities

    * * *
    XMRV Update: The Controversy

    Xenotropic Murine leukemia virus-Related Virus (XMRV) is an authentic and novel retrovirus that was first discovered in men with hereditary prostate cancer, but was subsequently described in up to 97% of individuals with CFS as well (Lombardi VC, Science, 23 Oct 2009).

    It is not clear, however, if XMRV causes CFS or is just associated with CFS (that is, it likes to settle in persons with CFS). Although many antiviral drugs have been considered for treatment of this virus, only four are currently considered ‘possibly effective.’ So there is no known treatment at this time.

    Controversy has developed because three subsequent studies from the UK (2) and the Netherlands failed to confirm the presence of XMRV in persons with CFS or in healthy controls.

    An elegant review of the subject (Silverman RH, Nature Reviews, June 2010) pointed out that this was not unexpected since these three groups used a variety of different techniques and human subjects.

    Last week, two US government groups produced contradictory papers. Scientists at the FDA and NIH concluded from their research that XMRV is found in the blood of CFS patients (Alter H, Proceedings of the National Academy of Sciences, unpublished). Speaking at a blood bank safety meeting in Zagreb, Croatia, Alter stated that his group confirmed the Lombardi study and described the data in the Science study as “extremely strong and likely true, despite the controversy.”

    Separately, scientists at the CDC concluded that they could not find XMRV in the PWCs (Switzer W, Retrovirology). In an unparalleled move, the Department of Health and Human Services (DHHS under Secretary Sibelius) requested both journals to “hold publication” of those articles, allegedly to ‘get things straightened out’ (Wall Street Journal, June 30, 2010).

    While the official government explanation was that senior public health officials wanted to see consensus or at least an explanation of why the results were different, many patients and CFS researchers fear that the CDC is once again trying to discourage research in what seems to be a productive arena.

    Based on findings by Drs. Lombardi and Alter, the American Association of Blood Banks has recommended that CFS patients be discouraged from donating blood...

    On July 1, the CDC group “jumped the gun” by prematurely publishing a provisional summary of their findings in Retrovirology online. We will leave it to the reader to consider the bio-politics in play here!

    So the XMRV issue remains controversial and “up in the air” much as the retroviral issue was in the late 1980’s when we first discovered retroviruses in PWCs. Research was stifled at that time by opposing factions, and it has taken over 20 years and the resources of the Whittemore-Peterson Institute to bring this intriguing possibility back to light.

    We urge patients everywhere to support efforts to explore XMRV further. Ways you can help are:
    · Donate a specimen of your precious blood to the SolveCFS BioBank. Click here for details.
    · Support the CFIDS Association of America. This group has worked tirelessly for almost three decades to promote scientific research about Chronic Fatigue Syndrome.
    · Donate to the Whittemore-Peterson Institute so that they can pursue this important lead to the bitter end.


    I think, ultimately, it's good the WPI is not dependent on the gov't...

  2. quanked

    quanked Member

    I finally understand some things I did not about the CDC/NIH&FDA studies.

    And ditto on your last statement. One has to wonder what in the world the CDC and the UK agencies involved have to gain by not getting down to business. I wonder how hard is it to read the directions/instructions/protocols and follow them down to the last period so that the WPI study can actually be DUPLICATED. Perhaps I just do not get it--maybe the process is more difficult to do (duplicate the WPI research) than I can comprehend.

  3. judderwocky

    judderwocky New Member

    Tell the DHHS to allow the NIH and FDA to publish their papers without undue procedures and hurdles. Preventing these papers from being published diminishes the trust of CFS Patient groups in the CDC and its willingness to deal honestly with this disease. To allow CFS patients and those with Prostate Cancer the best hope of fighting their illness, we must have the best scientific information that our government is capable of producing. Allow the findings to be released with all speed and tell the DHHS to stop playing politics with science.