On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments.
We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins.
We also sent this video plea to Francis Collins, demanding answers. (Warning: This video is hard, like so much of the work we do. It’s emotional- and it is why we sent it to Francis Collins along with everything else. He has to see it. He has to listen.)
Many of you all over the world sent us a plea, Whitney’s Plea, brought to us by the fearless family of Whitney Dafoe. Whitney has been severely ill with ME for far too long, and like millions of other patients worldwide, Whitney deserves to come back to his life.
See the Full PDF sent to Francis Collins Here.
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