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FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

Discussion in 'XMRV Research and Replication Studies' started by mingo, Jun 22, 2010.

  1. Recovery Soon

    Recovery Soon Senior Member

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    With all this talk of Guardisil - is there a link between HPV and XMRV?
  2. glenp

    glenp "and this too shall pass"

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    I don't think I agree with keeping the studies being done quiet - I think it helps to sweep xmrv under the bed

    Now not many know of the stanford or edmonton studies being done

    Hide the studies, watch it being ignored -WTG here we go bac to the days of the Freitas study

    glenp
  3. ukxmrv

    ukxmrv Senior Member

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    Recovery Soon,

    You asked about HPV and XMRV. My family has a high, insidence of death by cervical cancer. Since pap smears were introduced young women in my family (including myself) have repeat abnormal smears.

    My first abnormal smear was in my late teens as were other family members. This was a year or two before ME struck with an acute viral onset.

    A while back Dr Cheney said something about cervical cancer in CFS patients. I did a search.

    XMRV+
  4. boomer

    boomer Senior Member

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    I agree with you 100% glenp. I believe in raising awareness asap so that the funders of the world realize the problem is on the horizon and funding is needed sooner rather than later. The system until now has not looked after our interests. Each person has their own way of spreading the infomation. I don't think WPI should or would not follow the standard medical communication practices, but the sufferers should make themselves heard to the media or however you can be effective. Sufferers don't need to keep any secret(s). Today, I wrote Laureen Harper (PM's wife) with a video from Dr. Mikovits and told her Mrs Obama had met Mrs. Whittemore a few weeks ago when she was in Nevada and I wanted to share some of the information with her. I wrote Lowell Green our local radio host who has a talk show. I posted to the cbc web site proposing some of the $1.1 billion funding for women and children in poor countries could go to testing mothers to see if they have xmrv and suggesting they be aware of transfer of xmrv to babies through breast feeding. I included the youtube video from Dr. Mikovits. I wrote to David McGinty MP in Ottawa, whose brother is also the premier of Ontario too. I think if we all try to spread awareness, that it will help prepare people a little for when bigger news comes up and government needs to step up to the plate to fund research FAST. I don't really like having to do this but I can not not do this given the neglect of governments. I know the Federal Budget announcements come out in February each year and discussions about funding start in the summer in some cases. One of these February's I hope an announcemnt includes funding for xmrv. Maybe I am wasting my time, but I think it is my responsibility given my daughter has been sick for so long. Sometimes if you just get going on one email it is easy to forward the same short email to a few others.
  5. liverock

    liverock Senior Member

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  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Gnawing at me lately is that if this does get into T.V. national news, the comedians will likely pick up on it. I would hate to see them scoff at us out of ignorance. (But I have no problem with them joking about the ineptness of government agencies, or news media.)

    Tina
  7. Recovery Soon

    Recovery Soon Senior Member

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    Late Night Talk Shows mentioning XMRV and poking fun at us would be a PERFECT scenario.

    WPI claims patient discrimination- every media outlet picks it up- parallels are drawn btw HIV in the early 80's, and CFS/XMRV is a household word.
  8. glenp

    glenp "and this too shall pass"

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    WTG

    we have to keep doing what we can----not giving up

    I just posted a few comments at zoomers canada - I had originally posted there but they somehow disappeared. I posted at www.healthpost.ca and it disappeared too and I was permanently banned

    I just read of a poster who was told back in 1991 that his illness would not be discovered as AIDS was causing death and they were not interested in a new illness

    I don't know that many know of HTLV and how it is spread - the people are sick and die poof thats it. Patients dont mention it if they are embarassed about how they caught it

    glen
  9. alex3619

    alex3619 Senior Member

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  10. taniaaust1

    taniaaust1 Senior Member

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    oh wow..i've never heard someone say that before, that happened to us too. My first daughter (the only child of mine who has had vaccinations) on getting the measles vaccine promptly got the measles from it. The doctors said they'd never had that happen before and were concerned that she'd spread it to others so told me i had to noticfy all the other mothers from her playgroup as she'd had contact with all their children. This was for me was highly embarrassing as the other mothers couldnt understand how my daughter got it from vaccination. (After that incident i never got my children vaccinated from there as it left me with not much trust in things from there).
  11. taniaaust1

    taniaaust1 Senior Member

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    No way are we all going to allow that to happen in the computer age it now is, which allows people to put a ton more pressure onto things. This wont be as easily swept under the carpet.
  12. taniaaust1

    taniaaust1 Senior Member

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    who knows.. i know i carry HPV as it was transmitted to my child on birth as she had papillomas on her vocal cords which can be caused throu it. No one told me that i should of had antibotics while i was in labour to stop her from getting it.
  13. antibiotics are for bacteria, HPV is a virus so no connection
  14. MaryAnn

    MaryAnn

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    Ash is correct.

    Jspotilla – while I can appreciate what you are saying regarding individuals that do not have medical access having annual paps, I would prefer that in the US we provide poor woman with annual paps and proper tx, not a vaccine. In India, they have banned Guardasil after 4 young girls died after receiving it (recognizing causation has not been proven).

    Instead of the US fast-tracking the vaccine, and after Merck updated the side effects to include seizures as well as other serious issues, at the very least, they should be reviewing it again. I realize that loss analyses are conducted, but I just think my daughter should not be collateral damage. When it is your child injured, no risk is worth it.

    ukxmrv – I don’t know if there is any connection with HPV, but it certainly made me worry when the study with the Rhesus monkeys showed XMRV in the female (and males) sexual organs. Someone on this forum stated that XMRV should be looked for in a pap test since it hangs out in epithelial cells.
  15. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  16. MaryAnn

    MaryAnn

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    I agree with you Robyn. I just posted on a thread that was opened regarding vaccines and stated something regarding H1N1, so I will paste it here too:

    At Mayo Clinic, the spine specialist my daughter saw stated that he had seen about 10 people who had the same type symptoms as her after the H1N1 vaccine (he was perplexed and stated that it didn't see how that could be a coincidence - of course this was "off the record").
  17. Cloud

    Cloud Guest

    Exactly! I believe that's why Hep B vaccine triggered my ME/CFS....we shall see
  18. John Leslie

    John Leslie

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    Does anyone know whether the CDC has pressured the entity that is publishing the NIH study to delay its publication? I don't know how the CDC can legally do something like that, but I have heard that the CDC did not use the Lombardi methods. If that is the case their study will be negative for sure. I bet they don't want another government agency publishing contrary results. It would seem to me to be too embarassing. Can anyone contact the CDC to find out?
  19. sproggle

    sproggle Jan

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    Just so everyone is aware the WSJ has reported that the FDA &NIH replication study is "on hold".

    http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj

    Stalling for time IMO

    Jan xx
  20. jeffrez

    jeffrez Senior Member

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    NY

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