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.