Tuha, I think you are right, but I also think that it is not the people on this forum who need to hear this message. I believe that most of the people on this forum are doing just as you suggest already. They are writing letters to people in power and doing all they can with their limited energy and resources. I'll bet a lot of those votes for PANDORA in the Chase giving program came from the people on this forum. I think most of the people on this forum are already advocating for ME/CFS.
But you are right that if we don't do it, no one will.
There are many different kinds of activism. Some people are better at one thing than another. Some people do political lobbying, some people do fund-raising, some people talk one-to-one with neighbors, friends, and doctors, some people design and sell mugs, some people make socks for Sock It 2 ME/CFS, some people write to newspapers, some people write blogs to inform new patients, some people work through patient organizations. It all helps. I think it's important not to judge the way people make their contributions.
I also think that the time people spend on message boards like this doesn't take away from the time they spend in activism. Making connections with other patients is part of that process. It helps us to keep informed, to focus our efforts, helps us not to get discouraged or to feel helpless or hopeless. This is where we recharge our psychic batteries to keep up the fight. Other groups doing activism can hold meetings, seminars, and rallies, but many of our people are too ill to attend things like that, so this is the next best thing.
One of the questions we face is how to connect to the people who have this and haven't found their way to patient groups? People who may be dealing with this in isolation, or people who are just trying to get through the business of living? The only thing I can think of is through the media, but the coverage in the media isn't always helpful.