I'm a long time advocate and XMRV+. Typically I tend to enjoy your writing, but I couldn't disagree more on a couple of things you brought up. The following comment is dangerous to our cause and possibly the same thinking behind the lack of interest in research and funding.
"Everyone being healthy isn't an inviolable right. People suffer WORSE every day all over the world. I imagine starvation is worse. Or being tortured."
I'm not sure where your from but where I live many generations have worked hard, sacrificed, even given there lives to confront those problems. Now we face new and more complex issues but the system refuses to rise to the occasion for what seem to be political and monetary reasons.
I have been sick 14 years and completely bed bound for 4 years now.
Extreme torture is exactly what this disease is. The truth is I would take starvation because death comes faster.
Apparently you still have moments when life is bearable, but until you don't never suggest there are worse things. Yes the woman in Cambodia is tragic but I've never been able to have a wife or family due to illness.
Is it better to have loved and lost than to never have loved at all. For 30 years the patient community has tried to be civil with minimal results, so I would argue the opposite of what you suggest. I guess we could keep trying the same thing over and over and hope for different results, but then the psychologists would be right. Its time we demand the attention by any means necessary.