I'm sorry, but I don't know if this is helpful - as much as I love many of the things ME action does.
At least here, a post like this will read as just underlining the points our LP/biopsychosocial brigade make about ME-patients online activisme. Even the word 'activisme' is used in a hostile manner here. The number of tweets/emails made etc is just the kind of argument that will be turned around against us. It want read as impressive, but organized harassment.
Making it a battle over the narratives, is a strategy we have had to mostly leave behind - it is very risky. When the LP/biopsychosocial brigade takes up all the same tactics - as they do here, "Recovery Norge/Norway" - you can't argue against another patients story. But of course, other nations aren't in our situation.
Maybe it reads in other ways in other countries, but here, we've have had to learn to make it about documentation and the science. As people claiming to be healed by exercise, mindfullness, LP, diet, CBT etc also raised their voices, and claimed their right to speak for themselves. Which story is to take presedence then?
eta: spelling