XMRV Update, newsletter published by Hunter-Hopkins Center

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jul 19, 2010.

  1. karinaxx

    karinaxx New Member

    Original posting on http://www.drlapp.net/meLetterJul2010.htm


    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
    Triangle Facebook Page
    Hunter-Hopkins Is On Facebook too!
    Tips From Other Patients
    Best Wishes ….
    * * *

    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research that XMRV is found in the blood of CFS patients (Alter H, Proceedings of the National Academy of Sciences, unpublished).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. [Note: Hunter-Hopkins has always cautioned against this, as well as organ donation.]

    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.

    Research Opportunities
    We currently have three research opportunities available at Hunter-Hopkins:

    The Ampligen open label cost basis program continues to attract new participants. We currently have four PWCs actively receiving Ampligen (check out the “New Ampligen Diaries” blog !) and one on temporary holiday, but the program is accepting new applicants on a regular basis. If you are interested, go to our website, click on “Research,” then again on “Ampligen,” or just click here.

    Adolescents with Fibromyalgia may be interested in the study of an experimental drug for this condition.

    Lastly, we have just begun a study of a potentially new drug for the treatment of Neurally Mediated Hypotension in persons with CFS.

    All of these studies are best suited to individuals who live within easy driving distance of Charlotte, or who are willing to relocate temporarily. Obtain details about any other these studies by calling our research coordinator, Wendy Fallick, at 704 543 9692 or email her at wendy@drlapp.net.

    Mike Brown’s Triangle Facebook Page
    Mike Brown (Raleigh NC) wanted to help those with CFS and FM so he has started a new Facebook page, “Triangle Chronic Fatigue Syndrome and Fibromyalgia Support and Social Group.” He already has 34 fans, and is seeking more. Mike hopes to make this a social outlet for those with CFS/ME/FM, but he will also try to help out those who need a ride to the doctor, to run an errand, etc. If you are in the Raleigh-Durham-Chapel Hill area check out his site by searching “triangle chronic fatigue” on Facebook. Good luck, Mike!

    Hunter-Hopkins Facebook Page
    While you are checking out Mike Brown’s site, don’t forget to bookmark the Hunter-Hopkins site on Facebook. This media source is run by Dr. Laura Black and not only provides ways to meet others with CFS/ME/FM, but Dr. Black tries to keep you up-to-date with the latest information! Find us by logging on to Facebook, then searching “Hunter-Hopkins Center.” See you there!

    Tips From Other Patients
    Jan B. (Glade Spring, VA) buys some groceries and lots of supplies from www.alice.com (paper goods, cleaning supplies, personal hygiene items, etc.) They offer free delivery by mail. [Other patients order groceries online from Lowes Foods, Kroger, Publix, Harris-Teeter, and others. For a small fee they’ll package your groceries for you. Then you can just drive up and the grocer will load them in your trunk!]

    Jan also uses a Roomba™ robotic sweeper for her floor and carpet cleaning . She tried a Scuba robotic mopper “but he did not work as well or as efficiently as she does.” See Roomba work at www.irobot.com, but the Roomba is also available at Sears, Amazon, and other outlets.

    * * *

    Best wishes to all for a wonderful Fourth of July holiday.

    This newsletter is published periodically by Hunter-Hopkins Center, P.A., 7421 Carmel Executive Park, Charlotte, North Carolina 28226, USA.. Telephone (704) 543 9692, Fax (704) 543 8547.

    If you wish to UNSUBSCRIBE simply send an email to drlapp@drlapp.net with the word “unsubscribe” in the subject line or the message.

    [This Message was Edited on 07/20/2010]
  2. karinaxx

    karinaxx New Member

    Concerned Mother and Son,

    Thank you for your comment related to the Blood Products Advisory Committee meeting on July 26.

    Your comment will be provided to the Committee.

    Background information for the meeting can be found at

    Please note this session is informational only. There will not be decisional discussion by the Committee.


    LCDR Bryan Emery

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