Edit: There's a new/additional action requested by Bob: "I would ask All to call their Reps. and call Assistant Secretary Koh at 202-690-7694 it is a direct line in. Tell Assistant Sec. Koh to ask Sec. of Health Sebelius it is time for her to get involved."
Bob Miller is heroically continuing his hunger strike after the FDA's failure to approve Ampligen for ME/CFS patients. He's now into Day 9 and calling for two new actions by patients: to email federal officials to get the NIH to do a clinical trial for Ampligen and for US patients to contact their local NBC affiliate to pick up the Reno KRNV story.
Cort has a post by Bob on his Health Rising blog about this:
http://www.cortjohnson.org/blog/201...f-only-medicine-for-chronic-fatigue-syndrome/
I don't see a template email so if you'd like one, please feel free to use or adapt this one I came up with or post something better :
To: margaret.hamburg@fda.hhs.gov, howard.koh@hhs.gov, jarrettpublic@who.eop.gov, Kathleen.Sebelius@hhs.gov
Subject: ME/CFS patient on hunger strike for NIH trial of Ampligen
Message:
Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike on 29 January to show patients' desperation for the FDA to approve Ampligen for use in ME/CFS.
The FDA disapproved the drug and Mr Miller continues his hunger strike, requesting that the NIH conduct a clinical trial into Ampligen.
I support Mr Miller. The NIH spends only $6 million a year on ME/CFS while the disease affects 1 million Americans, costs the US government $20 billion a year and disables 25% of those whom it afflicts.
I want my life back, just as many of those on Ampligen have had their lives back. Many of us have been sick for decades and we can’t wait any longer. Please start an NIH trial of Ampligen and give us a future.
Your Full Name Here:
Address Here:
Years ill:
Bob also says:
Patients, please call your NBC affiliate to ask them to pick up the Reno KRNV story http://www.mynews4.com/news/local/story/FDA-denies-drug-for-Chronic-Fatigue-Syndrome/SboLsPYRqkekVYQN8cCfsQ.cspxt
The TV news story can be seen here http://bit.ly/XzvFVQ
Bob Miller is heroically continuing his hunger strike after the FDA's failure to approve Ampligen for ME/CFS patients. He's now into Day 9 and calling for two new actions by patients: to email federal officials to get the NIH to do a clinical trial for Ampligen and for US patients to contact their local NBC affiliate to pick up the Reno KRNV story.
Cort has a post by Bob on his Health Rising blog about this:
http://www.cortjohnson.org/blog/201...f-only-medicine-for-chronic-fatigue-syndrome/
I don't see a template email so if you'd like one, please feel free to use or adapt this one I came up with or post something better :
**********
To: margaret.hamburg@fda.hhs.gov, howard.koh@hhs.gov, jarrettpublic@who.eop.gov, Kathleen.Sebelius@hhs.gov
Subject: ME/CFS patient on hunger strike for NIH trial of Ampligen
Message:
Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike on 29 January to show patients' desperation for the FDA to approve Ampligen for use in ME/CFS.
The FDA disapproved the drug and Mr Miller continues his hunger strike, requesting that the NIH conduct a clinical trial into Ampligen.
I support Mr Miller. The NIH spends only $6 million a year on ME/CFS while the disease affects 1 million Americans, costs the US government $20 billion a year and disables 25% of those whom it afflicts.
I want my life back, just as many of those on Ampligen have had their lives back. Many of us have been sick for decades and we can’t wait any longer. Please start an NIH trial of Ampligen and give us a future.
Your Full Name Here:
Address Here:
Years ill:
**********
Bob also says:
Patients, please call your NBC affiliate to ask them to pick up the Reno KRNV story http://www.mynews4.com/news/local/story/FDA-denies-drug-for-Chronic-Fatigue-Syndrome/SboLsPYRqkekVYQN8cCfsQ.cspxt
The TV news story can be seen here http://bit.ly/XzvFVQ