You appear quite able to draft a coherent post. Justin is frequently more than able to do so. If that is the entirety of what you are capable of doing, you aren't as helpless as you claim.
Write your story And if it isn't the story you're hearing from the CAA, enlist a few folks from this site (or somewhere else) to put together a web-page (or even ask Cort - I suspect that he'd be on board) and let those stories speak volumes to the CAA or anyone else that you feel doesn't get it. Think something along the lines of the AIDS quilt.
This disease is hell and it wrecks lives; those of the patients as well as our families. I feel that we're we're on the verge of the larger population being very interested in knowing just how sick we've been and asking why our health agencies have been so indifferent and callous. If XMRV holds up, the population will need to know just how bad it has been and then they'll want to make sure that the same thing won;t happen to them (at least for a while)
But I refuse to believe that the best that you or anyone else is capable of is sarcasm and snide destructive comments.