by Cort Johnson
Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing
URGENT: ME/CFS Patient “A C T I O N”
A Call To Impact Our (me/cfs) Nation
For All ME/CFS Patients, Families and Friends (U.S. & Non U.S.)
Organizer: Robert Miller, Cort Johnson and TEAM
For the first time, people with chronic fatigue syndrome have the opportunity to make a difference in getting a drug approved for their disorder. At a public hearing on Dec. 20th an FDA advisory committee will advise whether Ampligen should become the first approved drug for chronic fatigue syndrome. As a part of that process they will review all comments produced by the ME/CFS community that are received by Dec 6th.
Ampligen presents a huge opportunity for the ME/CFS community. Not only has it been in the FDA pipeline for over two decades, it’s been the only drug under review for ME/CFS during that time. There are no other drugs waiting in the wings, no other drug companies developing drugs for this disorder; this is the culmination of decades of hope and the opportunity is large.
History has taught us that once a drug gets approved for a disease, other drugs, legitimacy and research dollars follow.
Let’s make history and get the first drug for ME/CFS approved in its long history by taking “A C T I O N” (A Call To Impact Our (me/cfs) Nation) and letting the FDA Advisory Committee know the urgency you feel for FDA approved drug treatments for this disorder.
Please send in your email by December 6th, and let the Committee know what it is like to live with ME/CFS daily and how needed treatment options are.
Our Advocacy Community will update you when other significant meetings are coming up, including the FDA Stakeholder meeting in the spring and issues dealing with CDC and NIH, but right now we need the Advisory Committee to hear from the patient community on this issue.
This drug is our AZT to the ME/CFS community. If approved we believe it will be just the beginning of treatments to come.
Sample Email Template
Send To Email address: AAC@fda.hhs.gov
Subject line: Treatment for Chronic Fatigue Syndrome – Ampligen
To The Advisory Committee Reviewing Ampligen:
My name is ___________________ I have had CFS for more than ___ years. Before I became ill I had a life that was ______________________. My life since having CFS has been____________________________ . We need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus. We are not second class patients. According to CDC studies, CFS is comparable to MS, late-stage AIDS, Lupus, rheumatoid arthritis, heart disease, end-stage renal disease, COPD and the effects of Chemotherapy. CFS/ME effects every moment of my life. We have seen and heard of patients doing well on Ampligen. Give this community Hope by approving Ampligen. We want our lives back.
(Please Cc: emails to Robert Miller at: firstname.lastname@example.org)