Interesting guest piece on Jennie Spotila's blog by Dr Alan Gurwitt: http://www.occupycfs.com/2015/06/13/stuck-four-months-of-almost-nothing/ He's attempting to provide a roadmap forward. One issue he brings up is the need for a national ME/CFS organisation, which does indeed seem long overdue. Some interesting comments on that. As an outsider, it seems odd to me that there's no national organisation for the US. In the UK, we've got four major ones and a load of others. I know we're only a fifth the size of the US in terms of population, but still! Is it normal for diseases to only have charities at the state level rather than national level in the US? Are there special difficulties in setting up something national? I'm aware of the problems with the CAA (now Solve ME/CFS) but is it surprising that nothing else has emerged to take its place as a national group? Some interesting comments already. Thanks for hosting the post, @jspotila!