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
4 thoughts on “#MEAction USA leaves the USAWG”
Beth and Jen: thanks for all you have done. Your health is the most important and no one should push beyond their envelop since crashes can be dire. We need to keep patients and activists as healthy as possible.
A very easy, low cost way to build high visibility for ME/CFS is to have every person put themselves on the http://www.diseasemaps.org website, perhaps using initials or pseudonym and putting exact location at some neutral school or park within a km of your home, not giving your exact address. 1000 ME/CFS patients are on the map & if we get 10,000, then 100,000, ME/CFS could become one of the most visible diseases of 435 diseases that are mapped, and then be easy to show to HHS, NIH, CDC, FDA, Congress, senate, country, state health officials, HMOs, Rotaries, Philanthropists, donors
etc that ME/CFS patients are everywhere. The dieseasemaps.org site can also list organizations, such as OpenMedicineFoundation.org is now listed, and also key centers or physicians. We cannot expect funding if hidden in the closet, so time to come out and ACT UP to Cure M.E. worldwide. You do need to create a login and be sure to archive your username and password since you might want to change later. You can also put your own comments or story in. Single time petitions and protests are fine, but putting yourself on the map will be even more enduring and perhaps influential.
Thanks Mark C – great idea!
Good luck with everything!
Thanks for everything you have done, and plan to do. I am pretty much house bound and in bed a lot of the time, so most of my networking is done on my phone. Having mobile-friendly websites are essential to those in my position.
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