I totally agree, Tuha. That was my idea, too. BIG demonstrations in every country (at least Europe and North America, edit: Australia and New Zealand too, of course

), right in front of the government building, on the same day, same hour. Stay there until everybody knows. Come again and again, if necessary.
But the important thing, in my opinion, is, that this would have to be planned right. It would certainly take time to prepare for this, probably at least a year. All the advocacy organizations should be on board.
We would really have to get ALL OF US out there. Only if the public and politicians see how many we are, they will understand the gravity of this. The number is the most important thing, in my opinion.
Some won't be able to attend, but that's a small number, at least in Europe, where distances are not so big. No excuses!! Sorry, i know we usually don't like to hear that, because it's wrong, but i have CFS myself, so i'm allowed to say it ;-). And this would really matter.
We would bring our chairs and beds, so we can make it. People could see this and would be able to understand better. Family or friends could come with us, to help (they could wear a different color of clothes than us, so everybody knows who is who). Maybe even some of us would not tolerate the effort and have to be carried away by paramedics. But that would really show people the reality about our condition.
Everybody would be invited to come there, look at us, talk to us. Like a big zoo

. Media would have to be contacted in advance, so it gets in the news. Drs. would have to be there too, to talk to the media and the public. Hospitals would have to be ready.
We would have to have a very clear and short enough message, who we are and what we want. We would have to prepare those arguments very well, in advance, and back them up with facts, as well as possible.
That's what i think we should do, if XMRV is not "it". And maybe even if it is, to raise funds.
On the other hand if XMRV is proven, then it will not just be PWCs, it will be everybody who's XMRV positive. So this will be a new situation and might change things. That's why i think we have to wait a little, until we know about XMRV and then decide what to do.
About hiring people. Sorry, this is not personal, but i think this would be wrong.
Because we should really come across as honest and serious. People have to see US, our FACES, our body language, how we barely can manage to sit straight and talk to them, in some cases.