MEadvocacy has not received a reply from Dr. Collins to the e-mail, which included the petition, sent on Monday Feb. 15, 2016 (see our blog NIH and CDC: You Got Mail). In the time since the original email was sent, Dr. Nath presented at the CDC Grand Rounds. Our petition outlined the reasons why we called for the cancellation of the study and since then new and disturbing information has been uncovered. We have sent a reminder email and gave Dr. Collins a response due date: end of Friday Feb. 26, 2016.
Subject Line: Follow-up from Feb 15, 2016 e-mail re - URGENT - IMMEDIATE ACTION NEEDED Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16th CDC Grand Rounds
We have not received your reply for the e-mail below. We would appreciate a response by end of Friday Feb. 26, 2016.
The ME community is justifiably angry by these choices that NIH has made in studying ‘fatigue’ - as opposed to a study of the neuroimmune disease, ME, with a study design approved by ME expert researchers (who have experience studying ME patients), as well as ME advocates and ME patients. Since our petition went out over a week ago, we feel it is reasonable to expect a reply from your office at end of Friday Feb. 26, 2016.
Mary Ann Kindel
Members of the Advisory Group of MEadvocacy
Email CC: Dr. Avindra Nath at NIH; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden at CDC; Dr. Elizabeth Unger at CDC; Dr. Walter Koroshetz at NIH; Dr. Vicky Holets Whittemore at NIH; Secretary Sylvia Burwell at HHS; Colleen Steckel at MEadvocacy