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Judy Mikovits email advice regarding XMRV negatives and variants.

Discussion in 'XMRV Research and Replication Studies' started by bullybeef, Mar 13, 2010.

  1. MEKoan

    MEKoan Senior Member

    I know! How wild is that!

  2. Ecoclimber

    Ecoclimber Senior Member

    Unfortunately, I don't like the tie in or comparison with HIV or Aids to CFS and XMRV that Judy Mikovits. CFS patients already face a hostile environment and public ridicule as it is but if people start to making the comparison that XMRV is in the same category as a sexually transmitted disease, CFS patients will soon face discrimination and isolation as Aid patients have been and are currently experiencing over the last few decades. Maybe, it was to present an alarmist view to the scientific community to get serious about this problem so more research dollars will flow into ME/CFISD research?
  3. I'm thinking there is an issue with the sex link. Too many spouses of ME sufferers without contracting the desease. There are clusters that dispute that, I know. Could be the two-hit effect: Sex or other bodily fluids transmit xmrv, but to activate it you need a second severe pathogen, like Epstein Barr or Lyme. I despise conjecture, but it is our language and we have been reduced to it for too many years
  4. acer2000

    acer2000 Senior Member

    I agree with this. I really wish they'd stop throwing around that comparison like its nothing. Not much has been done to combat the stigma of HIV over the years. Its frankly, horrible the way people with HIV are treated. One could argue that if the people who originally studied HIV had thought about these things ahead of time, it wouldn't have been as bad. Lets hope that if XMRV ends up being a similar illness, they will think about how they communicate their findings to the world so that stigma won't necessarily be a done deal.
  5. bullybeef

    bullybeef Senior Member

    North West, England, UK
    It is difficult to know how to accept the use of HIV and XMRV as one and the same. It is a very sensitive area, particularly for people whom know very little about HIV/AIDS.

    Whilst waiting for my appointment with my consultant yesterday, I browsed the leaflets in the waiting room, and picked up one which give guidance on HIV/AIDS. I have certainly become no expert overnight, but it was interesting how the stigma attached to being HIV+ (which doesn't always mean you will contract AIDS) is due to the fact it isn't spoken about; the lack of lectures or public talks about the condition, and how sufferers live with it. According to Nancy Klimas, whom claimed in an interview she would prefer to suffer from HIV/AIDS over XMRV/ME/CFS. But this is becuase of over twenty years of funding and research, people with HIV/AIDS now live normal, healthy lives. This was a big shock when I first heard, and gave me hope if one day I am diagnosed with XMRV.

    Whilst I was reading this leaflet yesterday, I also cast my mind to what I would do if I am in fact XMRV+. I would like I could make myself available to give public talks, particularly in schools. Education and knowledge is the only way to explain how people live with these infections, and life is relative. One mans suffering, is another mans normal daily life. We all learn to adapt, we have to. Since I was diagnosed with ME/CFS, and before XMRV, I've been telling my wife that there must be cellular damage occurring, why else could I feel this bad. And I'm a moderate sufferer. Being afraid to be labelled with a retrovirus is only natural, as it is only natural for researchers to compare XMRV to HIV, just based on their relation, and upon the possible numbers of infected. In fact that leaflet explained that there are 70,000 people in the UK whom suffer from HIV infection, and most of them dont know it. In comparison, there could be well over 2 million XMRV+, and the majority will also not even know it. So in any sense, XMRV may prove to be the most prevalent retrovirus ever known to man. Maybe that is why the scientists are playing it up.

    I just think we have to consider about the people whom are XMRV+ now, and be their to support them. It may help us to understand the XMRV/HIV comparisons and labels when it's our turn.

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