With our next Federal election just over a year away, it may be an opportunity - and enough time to get organized - to make ME an election issue.
Perhaps to build capacity / reach we'd partner with other illnesses / orgs that are marginalized like Lyme, fibro, etc so if would effectively be a 'marginalized / mis-treated illnesses' election issue. It dilutes the ME message but the bigger message would have much more push from communities behind it and we'd get out of talking in our bubble / to the choir.
There is a govt program that will pay the salary of a new hire (of a person on EI) for a non-profit for one year to work on a specific project. If a few orgs collaborated and each applied to this program, theoretically we could hire (and the govt pays) a handful of healthy full time folks to roll out a campaign.