Let's "Adopt a Sequence" (with funding) of an XMRV isolate!

Discussion in 'Fibromyalgia Main Forum' started by KnightofZero, Apr 16, 2010.

  1. KnightofZero

    KnightofZero New Member

    Hi Everyone!

    This idea is inspired by a blog post made by "gracenote" which is below:

    {{{ (I) think this is less about egos, and more about politics and money — research money.

    Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible" and that it's costly, around $2,500 per isolate. They had a donor who promised to pay for this who then backed out. She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS." [from a personal}}}

    As you can see it cost about *2,500 dollars* as of now to sequence an XMRV isolate.

    Now I'm positive with all the people on the board, we could make this number through donations. So this is a thread for people who have made, or are going to make, a Donation to the Whittemore Peterson Institute.

    Most of us are poor, to say the least. However, if we were to donate only 5-10% of the money we spend on supportive treatments, vitamins and the like we could easily above and beyond $2,500.

    Here is the link:


    Also if you think it is too difficult to donate straight-out consider these options:

    * Google Checkout { http://checkout.google.com }
    * IGIVE.com
    * Ebay Giving Works {http://givingworks.ebay.com}
    * Prohealth also donates a % of your purchase to ME/CFS Research.

    Most allow you to give while doing something else which you would do anyway (Search Engine, Sell on Ebay) Some of these might not work as yet, for example WPI isn't registered as a charity with Ebay as of this post though I submitted it to be registered (though it is on IGIVE).

    --->As much as possible I'd like to limit posts in this thread to:

    A.) To people posting their donations together with any personal remarks or remarks regarding research:
    I.) Use format:
    I. Amount you donated/plan to donate
    II. Your personal remarks

    B.) To people with alternative ideas:

    (Please make your own thread but feel free to post in this one directing people to your thread)

    If everyone likes this idea-- I can tabulate the total every so often and post it in the thread or on this page. I think one of the best benefits of a thread like this is to be reminded we aren't acting in a vacuum, *we're all a team pulling for more research, more funding and a cure!*

    Also if there is anyone who is well off and who would like to match everyone in the threads donations (or match half etc.) please PM me and I will update this page with that information.

    Note: The name I usually post under is "Sunnyslumber" I'm using a different name since "Sunnyslumber" really lacks giving any connotation of energetic action =)

    Note Two: I cross-posted this to the Phoenix CFS forums page as well. The more people the better!

    [This Message was Edited on 04/17/2010]
  2. KnightofZero

    KnightofZero New Member

    To go first; Monthly I spend about $50 on supplements and vitamins and about $120 on medications. So I donated $18.

    Additional Information from XMRV Global Action Cause:

    ""From XMRV Global Action Cause

    The Whittemore Peterson Institute is "attempting to isolate and sequence XMRV from as many patients as possible”. This is a costly undertaking, around $2,500 per isolate. The Whittemore Peterson Institute is having a difficult time funding this undertaking.

    •You can get research $$ if you're looking at a prostate cancer patient and XMRV.
    •You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
    •You can get NO research $$ to study XMRV in patients with ME/CFS.

    Please join us in our support of The Whittemore Peterson Institute by "ADOPTING A SEQUENCE". By donating 5-10% of your monthly expenditures on supportive treatments and vitamins we could easily raise above and beyond $2,500.

    Please consider:

    •Making a "one time" donation of 5-10% of your monthly supportive treatment expenditures.
    •Making a "monthly" donation of 5-10% of your monthly supportive treatment expenditures.
    •Ask your family, friends, colleagues, acquaintances and church if they are willing to match your donation.

    How to donate:

    •Click on the WPI Donate button located on the XMRV Global Action cause page. http://www.causes.com/causes/421525
    •Post a message at the bottom of our cause page with the following information: Amount you donated/plan to donate to The Whittemore Peterson Institute in name of the “ADOPT A SEQUENCE” campaign. Don’t forget to include information on matching donations you are able to procure. This way we can keep track of our progress.""
  3. KnightofZero

    KnightofZero New Member

    Plea from Dr Bell to donate to the WPI
    David S. Bell MD, FAAP
    Lyndonville, NY 14098

    May 1, 2010

    To my friends with ME/CFS,

    I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

    Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

    It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

    In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

    I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies which have established only that CFS can not to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

    Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stiffle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

    We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

    It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

    But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

    After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

    For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.

    Thank you.

    David S. Bell MD, FAAP

    1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.
  4. simonedb

    simonedb Member

    hey knight, thanks for the info, I agree its good to support WPI

    but a question, I have been considering getting the xmrv test done thru VIP. I don't quite understand how it costs 2500$ to isolate it at WPI but I can get validation supposedly for less in a private test? $400 I think for VIP test.
    [This Message was Edited on 05/03/2010]
  5. KnightofZero

    KnightofZero New Member

    They are seperate processes. When they test you for XMRV @ VIP they are testing via PCR and Culture(I believe). They are just testing to see if you have XMRV, but not the genetic code of the XMRV you have (assuming you test +).

    Sequencing is very different, it tells you all about an organism's (bacteria, virus, cat etc.) genetic code. From this you can make many deductions that are quite helpful in researching, and ultimately treating, the illness caused by the organism.

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