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IASCFS/ME - Science and the Hold on XMRV Studies

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by V99, Jul 30, 2010.

  1. judderwocky

    judderwocky Senior Member

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    Where have they said that?

    also that makes me think of....

    http://www.ncbi.nlm.nih.gov/pubmed/20378372
    Retroviruses are classified as exogenous or endogenous according to their mode of transmission. Generally, endogenous retroviruses (ERVs) are not pathogenic in their original hosts; however, some ERVs induce diseases. In humans, a novel gammaretrovirus was discovered in patients with prostate cancer or chronic fatigue syndrome. This virus was closely related to xenotropic murine leukemia virus (X-MLV) and designated as xenotropic murine leukemia virus-related virus (XMRV). The origin and transmission route of XMRV are still unknown at present; however, XMRV may be derived from ERVs of rodents because X-MLVs are ERVs of inbred and wild mice. Many live attenuated vaccines for animals are manufactured by using cell lines from animals, which are known to produce infectious ERVs; however, the risks of infection by ERVs from xenospecies through vaccination have been ignored. This brief review gives an overview of ERVs in cats, the potential risks of ERV infection by vaccination, the biological characteristics of RD-114 virus (a feline ERV), which possibly contaminates vaccines for companion animals, and the methods for detection of infectious RD-114 virus. 2010 The International Association for Biologicals. Published by Elsevier Ltd. All rights reserved.
     
  2. CBS

    CBS Senior Member

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    Hi Judderwocky,

    I have several issues with the CAA and even more with the WPI but I have recently donated to both the CAA and the WPI. Personally, I feel the CAA's research program is essential and complimentary to the XMRV work being done at a number of institutions.

    I do know from heading up a much smaller advocacy organization that with limited funds, my group was stretched very thin and often we were unable to respond to key issues as quickly or as thoroughly as situations warranted. We had to pick our battles and the CAA has said that right now their primary focus is on finding a biomarker.

    From the outside, it appears that the CAA is spread far too thin. They also appear to be struggling with their mission outside of the focus on biomarkers. And they get to chose how to alocate their time/resources. That said, to me they are the best bet for those of us not wiling to put all of our eggs in one XMRV basket. And if XMRV works out, the work the CAA is doing now will be of great use in understanding what XMRV has been doing to CFS patients.

    To be frank, I wish that there were three or four orgs like the CAA so that the various tasks (lobbying/fundraising, advocacy, patient, physician, public education, research, etc.) could all be given the attention they deserve (and no matter how much attention any one group is giving these topics, I hope we can all agree that the resources going into CFS right now are pathetically small).

    The sarcastic attacks shut down communication and suck energy away from efforts that I value and I am always going to respond by asking the person doing the attacking (as opposed to engaging) to put up by creating something more effective.

    If I was the CAA I'd feel inclined to create a sight like TakeOurJobs.com where the United farm workers have created a sign-up form where unemployed American citizens (especially those angry about immigration issues) can apply for jobs as farm laborers. After a month THREE people (out of all the presently unemployed) had signed up.
     
  3. CBS

    CBS Senior Member

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    I don't see where I said this was normal nor did I try in any way to defend the way the DHHS handled the situation
     
  4. judderwocky

    judderwocky Senior Member

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    I just think that if they channeled like 5% of their budget into some really visible "XMRV funding RESEARCH DONATION" button on their homepage... they cold probably outpace the 5% loss of their revenue to the research with the additional donations from people looking to give specifically to XMRV research... maybe i'm way off but at least give it a shot..

    The organization is delivering a product... people want to "buY" xmrv research and they need to market themselves as a product that sells that. Otherwise they just become a niche CFS research organiztion, and they need to appear as broad as possible to get as many donors as possible

    all i'm saying is capitalize on it... even if you can't really bank roll it... at least make it look like you can.... nobody would even really look that closely at the numbers if it even looked like they were diverting a small fraction of their funds there.
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Additional MuLVs found to infect humans

    Dr. Alter was quoted in the original press release from Ortho: "XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%."

    http://www.mmdnewswire.com/xmrv-9040.html
     
  6. judderwocky

    judderwocky Senior Member

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    Right.... but why is that why he is holding it longer?
     
  7. SOC

    SOC Senior Member

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    Thanks, CBS. Very well said. :Sign Good Job:
     
  8. Cort

    Cort Phoenix Rising Founder

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    This post leaves me dumbfounded. Your lack of clarity is staggers me (as well). Just what points stagger you?
     
  9. Cort

    Cort Phoenix Rising Founder

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    [/QUOTE]

    Well with regard to Dr. Mikovits her advocacy I do believe it is at times a bit inflammatory but I have long advocated more passionate advocacy from the CAA and I don't believe that aggressive advocacy is synonymous with inflammatory advocacy and probably shouldn't have used those words together. I would like to see the CAA be more aggressive in their advocacy - to let their hair down a bit more. I think it would work and I've said so numerous times.
     
  10. Cort

    Cort Phoenix Rising Founder

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    There's nothing matter, I think, with giving money to the WPI now. I think that's entirely appropriate. XMRV is the big discovery and it has the potential to do more for CFS than any other discovery - give away!

    "that doesn't change how they are dealing with this now? You mean the XMRV study with Glaxo Smith Kline? The one that's focusing on immune deficient acute onset patients? That study? Why should they do more than that? That in itself should tell what we want to know about XMRV. I would stop there if I was them. There have been lots of retroviruses that failed...first you replicate the research and then if that happens go on fund some more. You may not be happy with some of the CAA's public utterances on XMRV but they do have an XMRV study going on....that's kind of where the petal meets the metal for me.
     
  11. judderwocky

    judderwocky Senior Member

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    Just to inject some humor into the thread, I too am dumbfounded... but more likely due to the fact that I just rubbed alpha lipoic acid and carnitine all over my face.

    Its tingly. Like Noxema. My lips look like i had collagen injections, and then a seizure.
     
  12. Cort

    Cort Phoenix Rising Founder

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    :tear::tear::tear::tear: Good timing.
     
  13. SOC

    SOC Senior Member

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    Err.....why?

    Judders, what say we delete our extended miscommunication in this thread starting with my post that you felt was directed at you? It doesn't forward the thread much and CBS said everything I wanted to say only much better.
     
  14. Cort

    Cort Phoenix Rising Founder

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    I don't think we can saw anything conclusively about the Alter paper until we see it. Both papers - CDC and the Alter paper were held back - it may very well be that the Alter paper will get published and it will still have positive results. That would be nice on so many levels!

    A) We wouldn't have to think everyone is necessarily against us - and that some officials are really interested in the truth and

    B) XMRV would be validated.....

    That could very well happen. He's apparently an excellent scientist with a resume as long as his arm. Who's not to say that the extra work won't

    A) vindicate him and

    B) show where everyone went wrong.

    .........

    A) that's my humble opinion
    B) signing out now....:).
     
  15. judderwocky

    judderwocky Senior Member

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    Well... i'm pretty sure i have a precancerous lesion on my lip... and i read all this stuff about ala and alc on wound healing and cancer... and i saw some people using topical applications.... so the last few days i've started slathering it on my face for like 3o min lotion right before i shower

    its probably a horrible idea, and ill probably grow a third eye. but it actually looks like the lesion has closed up and is about half the size it was beforee.... also my complexion is much better, and it doesn't cause any pain....
    lol probably a bad idea, but who cares... i think it looks good ;p

    i dont have a delete button that i can see... where do i look ??
     
  16. SOC

    SOC Senior Member

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    Oh... well.... as long as it looks good. ;)

    Um... I think you do Edit and then there's a Delete This Post....

    [Off to try deleting]
     
  17. CBS

    CBS Senior Member

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    My wife recently had an aggressive melanoma removed from her nose (light skinned Irish who doesn't know she isn't supposed to spent so much time in the sun). It made for an unnerving couple of weeks.

    I hope you can get this checked out.

    With everything else we all deal with, I know it can be hard to deal with one more thing.

    Please take good care.
     
  18. judderwocky

    judderwocky Senior Member

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    yeah, my family gets those a lot, i'm on the lookout for it... my grandfather and uncle both got skin cancer, and my sister has had some suspicious things removed... i'm gonna have to get it looked at, but in the meantime i can't help but poke at it....
     
  19. CBS

    CBS Senior Member

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    I understand the urge but I want you to know how anxious that makes me.:worried:
     
  20. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     

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