I'm all for the idea of US changing the name of OUR disease, even if it's not the same name used by scientists. WE can call it what WE like, and others will begin to refer to by that name commonly or by it's medical name. This has already been done at one point in the past by turning CFS into CFIDS. Now you see our disease called CFIDS quite a bit. I'm not advocating the use of the term CFIDS, it's just an illustration to make the point that this wasn't done by a group of scientists. Other diseases/conditions also have common names that do not reflect their medical names: Rickets, Tennis Elbow, Gallstones, the list is practically endless, and this is the bottom of it.
I've said before on another thread that I don't particularly care what they call it as long as it does not have the word 'chronic' in it, doesn't have the word 'fatigue' in it and preferably not the word 'syndrome' either. I don't mind a bit having our disease associated with HIV. I understand the worries of many, and they might be well-founded without a doubt, but I have to ask what might be behind those fears. Is it because people will fear that we are infectious? Well what if we are? Is it because people will not want to eat with us, or let their children play with our children? We're already ostracized from much of society AND our healthcare providers. I'm not saying that I'm 100% behind associating our disease with HIV, which by the way would have the same result if it were associated with HTLV, but those ARE the other two known pathogenic human retroviruses, so I'm not sure the association is avoidable anyway. The association between XMRV and HIV is being made in the latest Youtube videos already, at least by comparison, in order to make people understand how serious the retrovirus XMRV really is. Is that really a bad thing? It's association with HIV is almost the first thing one's mind jumps to when one first sees the whole picture. Again, I'm not sure it's avoidable in the end. It is infectious and it is a retrovirus.
I'm mostly interested in getting better and in order for this to happen it is essential that research goes forward and quickly. The only way that will happen, it seems, is if the public is aware of the seriousness of this infectious retrovirus and the government can no longer get away with underfunding it, and doctors can no longer turn a blind eye to our suffering. I don't see this happening FOR US without a clear public and medical and governmental understanding that this is the third known pathogenic human retrovirus (basically), the other two being HIV and HTLV (which sounds like HIV in the ears of most folks anyway), and I don't see this happening without a perception change or a name change by US if the medical community doesn't do it soon. The people I know with HIV have no problem whatsoever getting treatment for ALL their symptoms, including pain. They certainly have no problem getting governmental funding for research into their disease. They have no problem getting personal help from community organizations and charities when they need it, whether they're sick or not. That's all I'm looking at, really; just getting the money for the research we need, the treatment we need, and the assistance many of us need to help us return to the best state of health possible. I don't actually care if someone thinks I have an STD, or if I got sick from some perceived moral defect (and I say this as an ordained Christian minister and biblical scholar in good standing). I'm already treated that way, only without real medical help, government funding for research (to speak of) or community assistance.
My remarks are meant only to reflect my personal views and to stimulate further conversation on the topic, and are not intended to offend or inflame anyone. I sincerely hope they are received in the spirit they are offered.