Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

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by Sasha



Bob Miller has started a hunger strike to push for FDA approval of Ampligen. He and his wife, Courtney Alexander, who are well-known for drawing President Obama’s attention to the plight of people with ME/CFS, urge us not to do the same.

Instead, they’d like us to send the email below, alerting key decision-makers to his strike, to add pressure to approve Ampligen as a therapy for ME/CFS.

The FDA is expected to announced its decision sometime around Sunday 2nd February – this Sunday – so there’s no time to lose.

Wherever you are in the world, please use Bob's template to email, and do it right now. It takes less than a minute: I’ve already sent mine.


Bob's message

Yesterday January 29th, I began a hunger strike seeking FDA approval of Ampligen, the only medication in FDA-approved clinical trials for Chronic Fatigue Syndrome, (ME/CFS).

The FDA Advisory Committee voted Ampligen is safe given the serious nature of CFS and the critical unmet need of patients.

Please support access to Ampligen for ALL ME/CFS PATIENTS by sending a note like the one below to the Secretary of Health Kathleen Sebelius, Assistant Secretary of Health Dr Howard Koh, FDA Commissioner Dr Margaret Hamburg, and FDA CDER Director Dr Janet Woodcock and Deputy Director Dr Sandra Kweder.

You can just copy and paste the email below.

Please also email or call your Congressional Representatives and Senators (look them up here and just click on your state) and ask them to investigate why the FDA refuses to approve the ONLY medication for CFS despite safe testing for 20 years. This is a health crisis!


The email

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: kathleen.sebelius@hhs.gov, margaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov,

sandra.kweder@fda.hhs.gov, howard.koh@hhs.gov, ash@hhs.gov,

bobmiller42@gmail.com

Subject: CFS patient starts hunger strike for FDA approval of Ampligen

“Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike in advance of the FDA’s Feb. 2nd deadline to decide on Ampligen, the ONLY medication in clinical trials for my illness. I support Mr. Miller because my life has been stolen by ME/CFS and I need real treatment options. We have waited 20 years, and we can’t wait any longer. The FDA Advisory Committee voted Ampligen is safe enough to market because CFS is so serious and there are NO medications to treat patients. Please don’t let the FDA reject the only medication CFS patients can hope for any time soon.”

Your Full Name Here:
Address Here:
Years ill:




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Comments

Dreambirdie posted this message recently with an additional, important, urgent and quick action to take if you're in the US:

Bob posted this on Facebook today:​
"Patients who are able can call NBC News at 212-664-4444 and comment on the story below. Be sure to tell the person who answers why you are calling, they will put you through to a comment line where you can request for them to plesae cover this important News story Nationally, be sure to tell them where you are calling from.​
Many thanks to All who are helping, my wife and I could not do this without your help and support.​
Kindly, Bob"​
THIS IS THE STORY he is referring to: http://www.nbcnews.com/id/50666787
 
Sent the e-mails - hope something good comes of his efforts.
 
someone commenting on Bob Miller's FB page said that she has been re-directed to send an email to NBC when she called the phone number. The email is: story@nbcuni.com
 
someone commenting on Bob Miller's FB page said that she has been re-directed to send an email to NBC when she called the phone number. The email is: story@nbcuni.com
Thanks, Nico - I'll post that on the thread I started on the NBC thing.
 
Done and dusted
from Australia
and for K2
No Worries
&
She'll be Apples
 
Please help non-native speaker to send this e-mail. Should I add "Dear Sirs and Madams" at the beginning?
 
Please help non-native speaker to send this e-mail. Should I add "Dear Sirs and Madams" at the beginning?
Hi Tally - I didn't put anything at all at the beginning of mine!
 
Bob posted this on his Facebook page a few hours ago:

A fast thank you for all the support, no matter the decision we must work together just as you all have been doing the past few days. Maybe it's the lack of food, but I have not seen our community this United for some time. You All are Awesome.

Bob
 
Last evening I emailed NBC (using the address Nico provided) to ask that the story produced by their Reno affiliate be carried nationally.
 
Hi, am I correct in thinking the second Ampligen FDA meeting is today or is it monday? Thank you.
 
Hi, am I correct in thinking the second Ampligen FDA meeting is today or is it monday? Thank you.
We've been told for a long time to expect a decision to be announced around Feb 2nd which of course is today and weirdly is a Saturday! That's all I know - anybody know any more?

Presumably the FDA can push that back if they feel they need more time so let's just keep piling on the pressure until we hear a decision.
 
Has backing this tactic really been thought through, do we want to be promoting the message that hunger strike is a legitimate campaigning tool. I fully support cause and publicising the supporting evidence but the decision should be based on the strength of the evidence alone not coerced under threat of self harm. It may well even backfire as decision makers would not want to risk it appearing as if such actions are effective.
 
Thanks for the reply Sasha I'm glad I got the right day and yes a Saturday at the weekend, a day when the media are less active and news can be more easily deflected.

wdb, I think Bob is very ill and probably needs Ampligen to have any function. In that circumstance I can understand why he would go on hunger strike to make a point for the FDA to approve it to himself and others. The drug is probably very hard to get and he likely has to travel a long way if he doesn't live locally to where it can be administered. I expect this is a short term protest as the decision is due any moment...we hope!
 
Hi wbd - that's an interesting point. I guess we'll all have our own personal perspective on this.

For me, I think that what Bob is doing underlines the seriousness of the situation. People don't go on hunger strike for trivial reasons and our big problem with ME has been the perception of our disease as trivial.

It's easier for organisations to make self-serving and poor decisions when they're not being scrutinised. A hunger strike has a good chance of getting media attention onto this and getting people asking the FDA difficult questions. I think it's going to help to get a big spotlight shining on the FDA.