We wanted to take this opportunity to announce to the community that #MEAction USA has decided to formally leave the US Action Working Group (USAWG). We will definitely continue to collaborate with many of its members and welcome them, and all organizations and individuals in the community, to use this platform to share their work and engage in discussion.
USAWG began as an informal gathering of individuals and organizations present at the August 2015 CFSAC meeting, convened by Solve ME/CFS. #MEAction was invited some weeks later to participate. We are proud of what has come out of the group’s collaboration to date, in particular the several open letters written to the NIH, the USAWG and community questions on the intramural study, and the congressional outreach taken this spring in collaboration with Solve ME/CFS and #MEAction.
Our primary reason for leaving is one of capacity. Our co-founder, Beth Mazur, had to step back from daily advocacy work for health reasons. As Jen’s documentary film nears completion, it needs to become the primary focus of her work. With these constraints, we don’t have the capacity at present to both participate in USAWG and nurture our still very young, start up organization.
Looking ahead, our goal is to become a mass, patient organization within the next year. That is to say, an organization comprised of all patients who wish to join and participate, where major decisions are taken by members through some kind of regular, virtual meeting and voting process. That has always been the dream for this organization – to be a digital ACT UP – but it will take time to grow the capacity to support that process. And we don’t know what the rules should be or what technologies might support it (if you have any ideas – please leave a comment below!)
In addition to the #MEAction global platform and umbrella, we hope to nurture self-organized affiliate groups around the world, governed by democratic decision-making and committed to patient empowerment.
-Jen and Beth