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Hunger Strike Continues: Phone and Email Now to Get an NIH Clinical Trial for Ampligen

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by Sasha


National Institutes of Health

The FDA may have disapproved Ampligen but Bob Miller isn’t giving up his hunger strike. Visibly weaker in a video clip on his Facebook page, on Day 9 of his hunger strike, Bob moved on to the next, logical target: he wants Secretary of Health Kathleen Sebelius to have the National Institutes of Health conduct a clinical trial of Ampligen.

There are several things that Bob has asked us to do to put pressure on the NIH. Please do them now. I hope we never have to see one of our number on hunger strike again: let’s act fast and not let Bob’s efforts be wasted.


1. Phone Assistant Secretary Koh

Most recently, Bob asked that those in the US call their representatives and call Assistant Secretary Koh on his direct line on 202-690-7694 and ask him to tell Secretary of Health Sebelius that “it is time for her to get involved."

To find your congressional representatives and senators, look them up here and just click on your state.


2. Email

Bob asked that we email the federal health officials below and ask for an NIH trial. I drafted the email below for anyone who isn’t able to do their own.

Click here to create your email automatically - all you then need to do is add your name, address, and number of years ill, and any personal message you'd like to add, and click Send.

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:


3. Call your local NBC affiliate

Reno KRNV did a good interview with Bob. Please call your NBC affiliate to ask them to pick up the Reno KRNV story.

Here’s the 1 February coverage before the FDA decision and then the 5 February coverage after Ampligen had been disapproved.


4. Give traffic and feedback to sites that cover the story

Bioworld, a pharmaceutical news site, ran an excellent piece by Randy Osborne and Bob would like us to email Mr Osborne at randy.osborne@bioworld.com to thank him.

We know that if a journalist covers a story and it gets a ton of traffic, it may help it get wider coverage or a follow-up. If you see a link to a story about Bob’s hunger strike, follow it and comment if you can.


Related links

Bob’s Hunger Strike Facebook page

Health Rising article on Bob’s NIH campaign




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I was a bit concerned to follow the link, but in case others have a similar dillema, Robert Miller feels he has accomplished some good objectives and has for this reason chose to end his action. He asks that the mass emails stop now and that we engage through the FDA Stakeholders' Meeting. Says the Secretary's office [SoH, I think] will engage with us there. Sounds promising. Definitely worth reading the link. :)
 
Glad to hear Bob feels we accomplished enough he can end his hunger strike.

Can anybody tell me something about the FDA's Stakeholder Meeting. What is it's objective? Who will be attending? Will it be webcast? How often do they have this meeting?
 
Glad to hear Bob feels we accomplished enough he can end his hunger strike.

Can anybody tell me something about the FDA's Stakeholder Meeting. What is it's objective? Who will be attending? Will it be webcast? How often do they have this meeting?

Sometime this spring, the FDA has not set a date. The focus is drug development (ironically enough) The first stakeholders was last Sept 13. The FDA has not held stakeholders meetings since HIV/Aids days. Long time coming.