Your Signatures Have Been Delivered
The deadline for the petition to the National Institute of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to stop the NIH intramural clinical ‘fatigue’ study and its presentation by Dr. Nath at CDC’s Tuesday’s Grand Rounds was completed Sunday Feb 14th at midnight. We are happy to report that the total count for signatures to the petition is 725. Your voices matter!
Letter to Collins Presenting the Petition
Dear Dr. Collins:
We are MEadvocacy, a non-profit organization advocating for patients suffering from the acquired neuroimmune disease, myalgic encephalomyelitis (ME).
We have initiated a petition signed by 725 patients suffering from ME, their friends and family as well as ME advocates and medical professionals. We are calling on the NIH to stop the proposed intramural ‘fatigue’ study. We also call on the CDC to cancel Dr. Nath’s presentation on this study at the CDC’s Grand Rounds on February 16, 2016. Please see the petition attached. https://www.dropbox.com/s/9ivx8iu8z3rhzgd/stop_nih_study_petition_final_2-15-16.pdf?dl=0
There are currently an estimated one million American men, women and children suffering untreated from this devastating and debilitating disease. Many have died too soon or committed suicide as a result. Parents have become unemployed, unable to care for their families. Children have lost their education and a chance at a normal life ahead of them. For over thirty years, ME patients have fought to get the HHS to recognize the biological reality of this neuroimmune disease. They have consistently campaigned for a proper name, criteria and funding on par with similarly burdened diseases.
HHS refused to listen to the ME community.
The protocol presented by NIH for an intramural study on ‘fatigue’ is totally unacceptable. Its design is faulty and is not a study of ME with its immunological and neurological abnormalities, but a study of a common symptom, ‘fatigue’. The dissemination of this information at the CDC Grand Rounds will cause misinformation about the disease which will further harm patients. Our petition, therefore demands an immediate stop of this study and a cancellation of Dr. Nath’s presentation. We call for a new, properly designed study of the neuroimmune disease ME with ME criteria selected cohorts (i.e. the CCC and/or ICC). See the petition for more details.
We demand open direct public communication by the US government health agencies to build a foundation of trust by being transparent to the entire ME community, not just to a select few people off the record without accountability.
We respectfully request a response to our petition and a reply to our requirements for the cancellation of the study and Dr. Nath’s presentation at the CDC’s Grand Rounds February 16, 2016 at 1:00 PM ET.
Mary Ann Kindel
Colleen Steckel (hard copy submitted by) ____
Members of the Advisory Group of MEadvocacy
Email CC:Dr. Avindra Nath; Dr. Brian T. Walitt at NIH; Dr. Tom Frieden; Dr. Elizabeth Unger at CDC;
Dr. Walter Koroshetz, Director of NINDS at the NIH; Dr. Vicky Holets Whittemore at NINDS
Enclosure: Petition: NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s
Presentation at the Feb. 16th CDC Grand Rounds, 16 pages.
Electronic Version of Enclosure: https://www.dropbox.com/s/9ivx8iu8z3rhzgd/stop_nih_study_petition_final_2-15-16.pdf?dl=0
How We Delivered Your Message to NIH and CDC
The petition was closed and archived after Feb 14, 2016 midnight ET.
We published the petition and the 725 signatures, including any comments that were made.
We sent the emails with link to the petition to Dr. Francis Collins, Dr. Thomas Frieden, Dr. Elizabeth Unger, Dr. Avindra Nath, Dr. Brian T. Walitt, Dr. Walter Koroshetz and Dr. Vicky Holets Whittemore.
- We are sending a hard copy via US mail to Dr. Francis Collins at NIH.