Well, we only have 470 active members on this forum... out of the millions that have this DD. Pretty amazing. People must simply be uninformed, disconnected and/or apathetic.
Can you imagine how much progress would be/would have been made if even a fifth of people diagnosed with this illness were active in changing things? There is no way Reeves, Wessely, et al. would have mismanaged this illness and oppressed us for so long.
This isn't something exclusive to our community, however. I mean, just look at how many people bother to vote in elections...