Announcing #MEAction groups We are thrilled to formally announce a new feature we’ve had running in the background these last few months: #MEAction groups. As many of you know, Beth and I have been deeply inspired by the legacy of ACT UP and its grassroots ethos. Decisions were made democratically but decisively in large group meetings,
Simmaron Powers Change in 2015! 2015 marks a powerful turning point for ME/CFS patients, and it’s all happening because of you! Patients, advocates and researchers have worked tirelessly to elevate our disease at the U.S. National Institutes of Health. On October 29, Dr. Francis Collins, Director of NIH, announced promising changes to the federal research
This is the fifth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur to meet other activists “face to face.” It’s an opportunity to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. We’d love this call to especially focus on connecting with
#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed. The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US
Background The Ministry of Health (MoH) is seeking feedback on its update to the New Zealand Heath Strategy. Let’s ensure the ME/CFS community is heard – express your views on the forum now! https://futuredirection.health.govt.nz/join-the-discussion/people-powered/are-there-health-services-geared-your-needs-and-lifestyle What you can do The MoH is asking: “are there health services geared towards your needs and lifestyle?”. This is a
This is the fourth of our new series of periodic calls for #MEAction co-founders Jen Brea and Beth Mazur to meet other activists “face to face.” It’s an opportunity to ask big picture questions about the platform, brainstorm strategy, and offer suggestions for future directions. We’d love this call to especially focus on connecting with
November 20th Update: Thanks to all of our members who voted in this poll. A significant minority of our members voted against #MEAction signing the letter, so we have decided to not formally sign the letter. We are still working out what policies make sense and really appreciate all of our members’ flexibility and openness
Help SOLVE ME/CFS INITIATIVE meet our challenge to receive $50K by making a Giving Tuesday donation.
I’ve raised $6500 in 24 hours — imagine what we could raise if you all joined in? You don’t have to create any content, or write anything. Just join the team, and share with the link with your network.
The Gottfries clinic is the leading ME/CFS and fibromyalgia clinic in Sweden. It both treats patients and conducts biomedical research, yet the health authorities there are planning to withdraw their support in favor for a “bio-psycho-social” approach to treatment. Politicians in Gothenburg, Sweden have now decided not to renew the contract with the clinic when
