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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the