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 as we work out the processes that can best represent our members.
Dear #MEAction users,
Please find below a letter to NIH which thanks Dr Collins and Dr Koroshetz for their October 29th announcement while also making clear that we need increased funding and follow-through to ensure parity with other serious diseases.
We are taking a vote of all registered users as to whether #MEAction should join the other organizations and formally sign this letter. Please respond by Wednesday, November 18 at 11:59pm US EST.
We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise