Hi Freds, any possibility to modify your great petition to incorporate the above suggestion and make it a more powerful statement? Something along these lines?
URGENT: Medical Crisis
An estimated 4 million US citizens are suffering from Chronic Fatigue Syndrome or CFS/ME [CDC, CFIDS]. 20 Million people Worldwide. CFS/ME is a serious and life threatening illness that is as debilitating as MS, Lupus, COPD, End stage renal disease and other severe chronic diseases [CDC], for which there is currently no approved treatment.
Rintatolimod (Ampligen) has been undergoing FDA trials for over two decades and has benefited a great number of patients to no end and without ill effect.
A drug company should be encouraged by FDA to pinpoint the particular subset or subsets of people who respond well to a drug, not discouraged. 20 years, one drug by one company.
Even those who do experience some of the reported minimal side-effects may very well prefer them over the unbridled disease with its devastating comorbidities. The FDA should not try to make these decisions for patients with a safe drug. There is no alternative treatment and nothing coming soon as no other drug company will sponsor an FDA trial until Ampligen is approved!
As CFS/ME Patients and Loved Ones:
§ We urge FDA to recognize patients’ input on December 20th, 2012, that Ampligen is safe, effective and a true option
§ We urge FDA to approve Ampligen in recognition that there is a crisis-level of unmet medical need in treatments for CFS/ME
§ We urge FDA to follow Commissioner Hamburg’s request from Dec. 5th “to go beyond the statistics, you’ll find the reality”
§ We urge FDA to follow President Obama’s request to elevate the priority of CFS
§ We urge FDA to recognize patients’ ability to make an informed decision to choose Ampligen under doctors care
§ We urge FDA to approve Ampligen by February 2nd, 2013, the sponsor agreed to a REMS program on December 20th, 2012
Please show your support by signing this petition. Share it with your friends and let the FDA know they too should hear us loud and clear: Let CFS patients decide!