Getting sick is not a punishment. Not from "god" or any other place. There may be karmic reasons for it, such as what being sick can teach us about compassion for others, and then for ourselves. (Karma is not punishment, but a balancing of energies.)
In Buddism, there is the concept of "making merit with Buddha". One of the reasons the poor and the sick are placed in our/their paths can be to give us/them the opportunity to make the choice of making merit with Buddha or ignoring the suffering and needs of others. When I am tempted, by other people's judgements, to condemn myself, I try to remember that I may be here to provide others with an opportunity to make merit with Buddha. Of course, it is healthier not to expect anything from them.
We sufferers of this DD know a lot of people who have chosen to ignore us or to contribute to our suffering. That is their choice and does not reflect on our value as human beings. It reflects a lot on them and their choices. Abuse of resources, power and position, for starters.
In Taoism there is the concept of monads, which are paired experiences, such as teacher and student; disease sufferers and healers, etc. According to my beliefs, we all have to do both sides of the monad sooner or later, in this life or another. Often we only experience one side of the monad in a particular life. And bottom line, we are all, even the "evildoers", doing the best we know how, with our, possibly, self-selected "blinders".
One of my Christian friends wrote a whole book on the concept that the caregivers get as much out of the equation as the receivers of care do.
"No one can make you feel inferior (substitute "wrong, stupid, etc.) without your permission" - Eleanor Roosevelt
Ladybug, don't give them permission. Ditch the guilt. Forgive yourself. If you have to start somewhere else, forgive those who have hurt you, first. We don't have to give up countering the ignorance wherever we meet it, but it is healthier for us not to waste energy on trying to change those who are not willing to learn. Like water encountering a boulder in the stream, we may need to go around them.
By the power entrusted to me by the goddess Quan Yin (goddess of compassion, and my avatar), I absolve you of guilt for everything, forever and ever. ;-) You really have done the best you could and no one, not even you, can expect more than that. Go say five "I am loveable just the way I am"s. Or ten, if you feel like it. Consider yourself hugged ((((U))))
And there are already dating sites for those who have disabilities, if it should come to that.
(I too, hope XMRV is the "cause" of ME/CFS, and I'd rather have XMRV than Reeves Disease. I can deal with whatever the ramifications would be if that turns out to be my reality. It's the unreality of not knowing that bothers me so very much. Not knowing steals my confidence in my own perceptions, and makes me vulnerable to other people's misperceptions. As for having an "untreatable" disease, I don't accept that as true either. If not antivirals, antibiotics, immune boosters, etc., then there is the whole new field of stem cell rejuvenation. They are even able to regrow TEETH from stem cells and implant them in your jawbone. Animal studies only, so far, but it's working for pigs. Even as we agonize over this DD, there are real scientists looking into the possibilty of treatment of this DD with stem cell therapy.)
Keep hope alive. Focus on the good as often as you do the bad. (Advice to myself, mainly.)