Peter, I understand your frustration - believe me. You are right, that Finns don't easily go protesting or demanding loudly. I quess we are somewhat "shy" people, and demanding things goes maybe a bit different way -- letters, mails, contacting, media, etc..
To be honest (this may sound weird) but Im feeling positive how CCSVI things are at the moment.. It has been even better than I though some time ago. Many people has taken contacts to biggest university hospital and that has had effect.. to my knowledge they are going to start researching this. Of course there is always possibility that things happen slowly or there will be obstacles. Then its time to mach on the streets.. or use media, it is very effective way to fight for rights in Finland, and we will use media - if given promises about research don't come true. So Peter, we are same side - again, I understand the pain, we are in a same boat.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8
Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg