"Discussion on XMRV" by Lucinda Bateman, MD - OFFER online video: (Dec 2)

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Dec 16, 2009.

  1. QuayMan

    QuayMan Member

    (Apologies if this has been posted before)

    (See accompanying message where OFFER are raising money for XMRV research at the University of Utah)

    "Discussion on XMRV"
    Lucinda Bateman, M.D.
    December 2, 2009


    Please click on the "Play" button to start the video"

    The Organization for Fatigue and Fibromyalgia Education and Research (OFFER) is a 501(C)3, charitable, non-profit organization devoted to eradicating Chronic Fatigue Syndrome and Fibromyalgia by spearheading research, education, and advocacy for and on behalf of individuals who suffer from these debilitating illnesses. Your donations are tax deductible. Donations may be made online by credit card or personal check. Donations by personal check may also be mailed.


    PayPal accepts most credit cards and checks.

    More OFFER education videos at: http://www.offerutah.org/educationmtgvideos.htm

    [I am not associated with OFFER but they have thanked me before for
    forwarding their e-newsletter to Co-Cure. Possibly best to say what the
    money is for, if donating for XMRV research, which can usually be done when
    paying through PayPal or else E-mail them after you donate. Tom]


    Organization for Fatigue and Fibromyalgia Education and Research

    December 2009

    Dear member of OFFER community:

    Imagine your life better because of new FMS & CFS research!
    Then imagine significant research taking place here in Utah. Prime time
    television ads have acquainted most households and thousands of medical
    providers with FMS as a painful neurological disorder, yet only a handful of
    on-going research projects throughout the U.S. have been searching for the
    cause(s) of CFS----until now.

    The biggest CFS news is the discovery of XMRV(xenotropic
    murine leukemia virus-related virus), found to be highly associated with CFS
    in a study published in the October 23rd issue of Science Magazine. This
    retrovirus was found in the blood of the large majority of CFS patients in
    this study compared to low levels in the general population. Now we need to
    know more.

    OFFER applauds this breaking research but recognizes the
    imperative for more answers. OFFER would like your help in moving this
    science forward quickly. A leading XMRV scientist, Dr. Ila Singh, is here on
    the faculty of the University of Utah. Our own Dr. Lucinda Bateman, an
    experienced clinician and recognized expert on CFS, would like to harness
    the scientific genius of Drs. Alan and Kathy Light, recruit the local CFS
    patient population as volunteers and combine resources with Dr. Singh to
    study XMRV in CFS right now!

    In addition, the CDC will be conducting XMRV studies. They
    have asked Dr. Bateman and select clinicians around the country to obtain
    blood samples from their local CFS patients. Beyond the costs of actual
    laboratory research are the expenses of identifying and contacting patients,
    obtaining Informed Consent, collecting, storing and shipping samples. So,
    while exciting, it is extremely expensive.

    We need your help now more than ever before. The "R" in the
    OFFER name is for Research. OFFER needs your help now to accelerate this
    ground-breaking research opportunity. Finding the cause(s) of CFS and FMS
    will lead to more effective treatment, a possible cure and prevention.

    OFFER has set a goal of raising $50,000 for research. We are
    reaching out to you, the CFS/FMS community and the public at large, for help
    to fund immediately-relevant, promising local research. We cannot emphasize
    enough the importance of acting now. We are closer than we have ever been to
    understanding these debilitating illnesses. Please help with your
    tax-deductible gift. There is a link at the bottom of the page that will
    allow you to make a contribution through PayPal, using your credit or debit
    card or your check. Or, you can also donate on-line by visiting
    www.OFFERUtah.org and using Pay Pal .

    Watch our OFFER E-NEWS monthly newsletter for the date and
    venue for our Spring 2010 Conferences for providers and patients.
    Presentations will include XMRV research updates. Visit OFFERUtah.org to
    sign up for the OFFER E-NEWS, to view past conference speakers, and much
    more. Stay connected. Stay hopeful.

    Sincerely, OFFER Board of Directors

    OFFER: 1002 E. South Temple, Suite 408. Salt Lake City, UT
    84102. Phone: (801) 328-8080. Fax: (801) 359-7404

    Board of Directors: Lucinda Bateman MD, Stuart Drescher PhD, Ted
    Kaly BSEE RR, Loren Lambert JD, Linda Milne, Paul Shepherd M Ed, N. Lee
    Smith MD, Scott Stevens Webmaster. OFFER is a 501(c)(3) non-profit

    Paypal - the safer way to pay online!

    PayPal - The safer, easier way to pay online!
    [QM: there is a hotlink here but not sure if link will be different each
    time so use the one on the OFFER site:
    http://www.offerutah.org/donations.htm ]
    [This Message was Edited on 12/17/2009]
    [This Message was Edited on 12/17/2009]
  2. QuayMan

    QuayMan Member

    I don't know if this is going to assuage your suspicion, karinaxx, but perhaps it will for others.

    Firstly, I live in Ireland. The money certainly isn't going to me. Some people on this forum will probably know me from other forums.

    Secondly, Lucinda Bateman is a well-known figure in the ME/CFIDS community.

    Thirdly, Drs. Alan & Kathy Light published an interesting study on exercise abnormalities in CFS a few months ago: "Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects." Light AR, White AT, Hughen RW, Light KC.
    Journal of Pain. 2009 Jul 30. [Epub ahead of print]

    Fourthly, I have no reason to believe OFFER isn't anything other than a genuine non-profit. People can check out their website. They have videos of conferences one can watch going back many years.

    These details for OFFER are not showing up above even though they are there when I edit the message - don't know why but it works if I spell out the area code:
    Tel: (Eight Zero One) 328-8080.
    Fax: (Eight Zero One) 359-7404

    Fifthly, the reason you might not have heard of Dr. Ila Singh is because she is an XMRV researcher it appears - do an internet search for:
    "Dr. Ila Singh" "chronic fatigue syndrome". Here's a short bit of info:Dr. Ila Singh, one of the XMRV/prostate authors is the director of ARUPs retrovirus division (ARUP is an abbreviation for Associated Regional and University Pathologists www.aruplab.com )

    karinaxx, if at any stage you become satisfied it is not a hoax, perhaps you could edit or delete your message please?[This Message was Edited on 12/17/2009]
    [This Message was Edited on 12/28/2009]
  3. QuayMan

    QuayMan Member

    I just gave a small donation (I am grateful to OFFER for making this and other conference videos available on their website). With Paypal there is a little box, "special instructions" and one can specific one wants to give it to the XMRV research if you want.
  4. 3gs

    3gs New Member

    I live in Utah. I have been on the waiting list to see Dr. Bateman for almost 2 yrs. Her clinic and staff are wonderful.

    Ironically she diagnosed me in the 80's with EBV and chronic fatigue. at that time she was working with a well respected doctor who went on to be a Aids-Hiv specialist.

    I will be donating. thanks Quayman for this info. I live here and didnt know about this.
  5. SpecialK82

    SpecialK82 New Member

    Thanks so much for posting! I really appreciate it, she's such a great speaker - I am donating to every credible place that I can in order to keep the ball rolling.

  6. QuayMan

    QuayMan Member

    That's great, 3gs and SpecialK82/Kristina.

    Fingers crossed things get going. I'd say if they get a certain amount from the initial appeal but still don't make it (I don't know - $10,000+), OFFER may then try looking at other sources e.g. do a mail-shot by post to anyone who has ever contacted to them, maybe fund-raising events, etc.
    Even quantity of donors can enthuse them - if they get 50-100 people donating to them even if it's not $10,000 they raise from the initial appeal, it could still enthuse them to try to raise the money.
  7. QuayMan

    QuayMan Member

    Dr Ila Singh is mentioned in the paragraph extracted from the message above:

    "OFFER applauds this breaking research but recognizes the
    imperative for more answers. OFFER would like your help in moving this
    science forward quickly. A leading XMRV scientist, Dr. Ila Singh, is here on
    the faculty of the University of Utah. Our own Dr. Lucinda Bateman, an
    experienced clinician and recognized expert on CFS, would like to harness
    the scientific genius of Drs. Alan and Kathy Light, recruit the local CFS
    patient population as volunteers and combine resources with Dr. Singh to
    study XMRV in CFS right now!"

    In case people were wondering who Dr. Ila Singh is, here's an abstract of a study she co-authored which found XMRV in prostate cancer, so she knows how to find it.


    Proc Natl Acad Sci U S A. 2009 Sep 22;106(38):16351-6. Epub 2009 Sep 8.

    XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors.
    Schlaberg R, Choe DJ, Brown KR, Thaker HM, Singh IR.

    Department of Pathology and Cell Biology, Columbia University Medical Center, 622 West 168th Street, New York, NY 10032, USA.

    Xenotropic murine leukemia virus-related virus (XMRV) was recently discovered in human prostate cancers and is the first gammaretrovirus known to infect humans. While gammaretroviruses have well-characterized oncogenic effects in animals, they have not been shown to cause human cancers. We provide experimental evidence that XMRV is indeed a gammaretrovirus with protein composition and particle ultrastructure highly similar to Moloney murine leukemia virus (MoMLV), another gammaretrovirus. We analyzed 334 consecutive prostate resection specimens, using a quantitative PCR assay and immunohistochemistry (IHC) with an anti-XMRV specific antiserum. We found XMRV DNA in 6% and XMRV protein expression in 23% of prostate cancers. XMRV proteins were expressed primarily in malignant epithelial cells, suggesting that retroviral infection may be directly linked to tumorigenesis. XMRV infection was associated with prostate cancer, especially higher-grade cancers. We found XMRV infection to be independent of a common polymorphism in the RNASEL gene, unlike results previously reported. This finding increases the population at risk for XMRV infection from only those homozygous for the RNASEL variant to all individuals. Our observations provide evidence for an association of XMRV with malignant cells and with more aggressive tumors.

    PMID: 19805305 [PubMed - indexed for MEDLINE]

    PMCID: PMC2739868
  8. bigmama2

    bigmama2 New Member

    i just watched the video. dr bateman is awesome! maybe there is hope for us. i think i would test positive for xmrv.

  9. fight4acure

    fight4acure Member

    This virus should be called SOL virus!!! Or UACWAP Virus (up a creek without a paddle).

    Fight2Educate! :)
  10. skeptik2

    skeptik2 Member

    As usual, you are right on top of things! Bless you dear one,
    especially during this holiday season and in the coming
    (EXCITING!) New Year!

    I can't afford a dime right now because of Christmas; I
    didn't think to ask my family and friends to make a donation
    to dot orgs as their Christmas present to me, at least I
    couldn't do it in time to be effective this Christmas.

    However, I have a b'day coming up in February: I'm going
    to ask them to donate to 1-2 places then...every little bit
    will count, and the 'giving' will not be over when the
    holidays end.

    Maybe others could set up a donation to be taken every
    month from their bank account? That way, the funds will
    continue into the future, maybe ensuring fast research and
    viable treatments will be here very, very soon! It doesn't
    have to be very much, just according to your resources.

    Happy Holidays to you all...

  11. nah.stacey

    nah.stacey Member

    I live in Utah and have also been on her waiting list for two years, I called her in Oct. and they said she is now no longer "practicing", "practicing", she is more of a consultant now.

    I also saw Dr. N. Lee Smith (he is also on this board) in 2003 at the beginning of my search and he was old (middle - late 70's) then. He was the one that kept discounting my pain and my high blood pressure, sure it was high because of pain but when you tap in at 185/110 for two days solid and you are constantly in the 170's every visit, mightn't something else be wrong? He just kept trying to get me to go to behavioral classes and giving me AD's. I only stayed with him a year before he belittled me one too many times.

    Who do you see now? My Primary is about to retire and I'm getting desperate.

  12. QuayMan

    QuayMan Member

    Sorry to hear money is so tight, skeptik2, but great to hear you are going to give in the future.

    Regarding the monthly giving: we have encouraged that in Ireland and it has worked out rather well. People generally give much more that way than they gave before when they donated once a year. And people have also got relatives to sign up and again they are giving much more than they would ever have done by giving on a once-off basis.
  13. QuayMan

    QuayMan Member

  14. karinaxx

    karinaxx New Member

    Thank you for your reply.

    just to clear up some misunderstanding.
    I did not write it is a hoax! And i did not suspect you to play any role in a hoax!

    What i did not like is their link to the CDC and asking for funds which have been given to the CDC by the american tax payers before and which has been missused in the past by the CDC ! I deeply misstrust the CDC and especially any involvment in ME/CFS research!

    Dr. Ila Singh, a professor in the University of Utah's department of pathology and senior author of the research involving prostate cancer patients, has been mainly involved in cancer research, but in this instance it is linked to the CFS research because of the discovery of XMRV in both groups.
    But that said, i do not in any way underestimate the importance of the cancer institute involved in this discovery.

    Cancer research has gotten so much more funds than ME/CFS research.
    I would give a donation , if i had the money to give, to the expert of ME/CFS, who really have a genuine interest in us the ME/CFS patients and do really need this funds; This is the Wittermore-Peterson Institut !
    That is my opinion, thats all
    Regards Karinaxx

    [This Message was Edited on 12/28/2009]
  15. skeptik2

    skeptik2 Member

    I listened to Dr. Bateman's lecture, and the way I understood it
    was that they were involved with the CDC this way:

    They will be sending blood of patient's to the researchers at
    the CDC (who are NOT Reeves' CFS department!), as they
    will try to replicate the WPI's studies. The WPI knows who
    are going to do the research, and will be closely monitoring
    the procedures to make sure the studies are done in the
    manner in which the WPI did their's...does that make any
    sense, am I clear? Very tired after the holidays.

    Hope this helps you understand that the U. of Utah and
    their researchers are in no way 'bought into' the Reeves'
    Empirical Definition of CFS, and they really have the
    patient's interests at heart, like Dr. Klimas at the U. of

    Best to you, and a good New Year! GO! XMRV!

  16. QuayMan

    QuayMan Member

  17. QuayMan

    QuayMan Member

  18. QuayMan

    QuayMan Member

  19. QuayMan

    QuayMan Member

    Thanks for donating, frenchtulip. When one person donates to research, it is like a gift to us all.

    I agree the line-up should be good. It would be good if another place apart from the WPI finds XMRV - and Dr. Ila Singh has found it before.
    [This Message was Edited on 01/26/2010]
  20. QuayMan

    QuayMan Member