I have one very simple answer to this: join a political party! 1000 CFS patients organized in a self support group are one thing, 1000 party members are a completely different matter. Party representatives need support from plain members, and oftenly every single vote counts. So you sell your support and the representative sells agendas. Labour for instance has 200.000 members. Relate that to the number of CFS sufferers in the UK and it is easy to see how you could become a reasonable political power.