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Friend of family member with Atypical MS? Alzheimer's? Lyme?

Discussion in 'Action Alerts and Advocacy' started by awol, Aug 12, 2010.

  1. awol

    awol

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    XMRV implicated or similarly under-researched diseases - outreach

    As is clear from the recent patent application submitted by WPI researchers and collaborators, the list of diseases in which XMRV is possibly implicated is very very long:

    Prostate Cancer
    ME/CFS
    Atypical MS
    Fibromyalgia
    Autism
    Bipolar Disorder
    Alzheimers
    ALS
    Lymphoma
    Leukemia
    Female Cancers
    ................... and more.

    ALL of these possible associations need to be investigated and that will take lots of research. In the meantime, the public needs to be aware that the virus is out there, is no doubt dangerous (there is NO SUCH THING as an infectious retrovirus that is NOT dangerous) and that research is badly needed to find effective testing and screening methods to stop its spread and protect the blood supply. The XMRV story is not just about us!

    Therefore, we are trying to put together an outreach team as part of Project ENOUGH!!! These people will try to build alliances with patient organizations and forums for other diseases to design actions to ensure that the necessary research happens, and soon!

    I hope there are some people out there who have some small awareness of one or more of these diseases who can offer to help reach out to these related patient groups.
     
  2. V99

    V99

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    Keep informing and spreading the word guys. Enough is enough!!!
     
  3. awol

    awol

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    We still REALLY need volunteers for this. Some are more important than others.

    Atypical MS is a really promising one with an active and respected set of patient organizations. We need to tap into that! Who wants to help?
     
  4. awol

    awol

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    And Gulf War Syndrome anyone? We all know this needs to be studied!
     
  5. Mya Symons

    Mya Symons Mya Symons

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    I am a little freaked out reading this list. I did not know that they thought XMRV might be somehow implicated in these listed diseases. One of my sister-in-laws (also closest friend) was diagnosed with early onset Alzheimer's about two years after she was diagnosed with FMS/CFS. I am wondering what the chances of this being coincidence is? I have been attempting to find other articles related to XMRV related Alzheimer's, but cannot find them. Can someone help? I do not know what else to write-very upsetting.
     
  6. awol

    awol

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    Hi Mya,

    It is important to note that none of these links are confirmed. Even the PC and ME/CFS links are still being debated for now, and the rest have no published data. However the way that XMRV causes damage is through insertion into, and therefore disruption of our DNA. This can cause different types of problems depending on where the insertion occurs, and what other factors - viruses, bacteria, genetics etc. are in play.

    So....these potential links need to be studied. Our project aims to make these patient groups and researchers of these diseases aware that this needs to be studied.
     
  7. awol

    awol

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    Project ENOUGH!!! Still needs volunteers to help build alliances in the interest of good research on latent viruses and retroviruses.

    XMRV may be a factor in way more than just ME/CFS and Prostate Cancer! Help us reach out and bring our communities together for effective action.
     

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