Bob’s story is spreading; let’s make it go national….


The plight of the chronic fatigue syndrome community was given a sympathetic and moving portrayal in a TV news story in Reno  yesterday that featured Bob Miller and Dr. Janet Smith, another Ampligen recipient.  The news organization contacted both the FDA and Hemispherx regarding the story.  That story hit the internet this morning.

An abbreviated version of the story was picked up by the national NBC website this afternoon. Our goal is get the story to go national.

Cleve Jones, the founder of the HIV/AID’s and no stranger to FDA foot-dragging on needed drugs, registered his support for Bob’s action and Ampligen approval

“My friend is on a hunger strike to get the first medicine approved for his severe case of chronic fatigue syndrome. FDA is likely to deny the drug this weekend. We know we wouldn’t be where we are today if some of us hadn’t protested inaction by federal agencies on AIDS treatments

Urge FDA to approve Ampligen, so all CFS patients can have just one treatment option. CFS patients suffer without any treatments, and I can remember those days in my life. I urge Secretary Sebelius to approve Ampligen for CFS and apply what we learned with HIV about getting treatments to patients like every minute counts.”

Journalist Llewelyn King’s comments on Bob’s hunger strike will air on 200 PBS and public, educational and governmental cable TV stations and worldwide on Voice of America Television and will be posted on the White House Chronicle Web site, whchronicle.com, on Monday, Feb. 4.

Please ‘like’ and support a new Cause page on Facebook “Hunger strike For Ampligen Approval for CFS”

Annette Whittemore, founder of the Whittemore Peterson Institute to study neuro-immune disorders had this to say:

“I believe that Ampligen’s success in this patient population is telling us something important about the disease and those who are most susceptible. We owe it to the patients to find out what that something is. Despite the fact that we don’t know the exact mechanisms behind this drug’s efficacy, it has proven to be life saving for some, and therefore, it should be made available to those who truly benefit from its healing properties.”

Bob Miller’s hunger strike is providing us with a gift; an opportunity to draw attention to the needs of this disorder that we have not had before and the stakes are high.

Bob Miller’s Statement on Ampligen on the Fourth Day of His Hunger Strike

I recently bumped into Anita – who was bedridden this time last year – but, now, after a year of Ampligen, has to find ways to burn off her extra energy. Mary Schweitzer was in a wheelchair and was horribly cognitively challenged before she got on Ampligen. Kelvin Lord’s stirring story was witnessed by many in his blogs. Dr. Peterson recently  highlighted a surgeon who is working full time only because she’s on Ampligen.

These are just some of the people who’s lived have been turned around by this drug. Of course, not everybody on Ampligen is so successful but enough people are that there’s no question that this drug should be available. The doctors who prescribe the drug are united in that.  Most of the FDA Advisory Committee was united, as well, that Ampligen safe enough to be marketed to ME/CFS patients.

Dr. Janet Smith on Her Response To Ampligen

In a remarkable turnaround, though, the FDA appears to be disavowing the results of that question.  The FDA Advisory Panel did not agree that Hemipspherx had sufficiently proved that Ampligen safe or effective but they did agree in an 8-5 vote that the drug was safe enough to be marketed to the CFS community.  They voted that way because they felt the safety data was good enough and the need was more than great enough for this drug to made available.  There’s little doubt that a similar phrased question with regards to efficacy would have received the same vote….In short, a majority of the Panel voted to market this drug…

Please ‘like’ and support a new Cause page on Facebook “Hunger strike For Ampligen Approval for CFS”

The FDA appears to be having none of that, though.  It wouldn’t be that hard to  fashion a win-win decision; conditionally approve Ampligen with restrictions, thus allowing Hemispherx to raise money for the rigorous studies the FDA wants. That way the community gets their shot at the drug,  the FDA gets the studies they want and Hemispherx gets the opportunity it needs to prove its case. Its going to take some work, though, to move the FDA.

Ampligen Recipient Anita Patton on FDA Approval

Please support these efforts by telling NBC we want this story to get blasted across the country.  Please recommend/share/tweet the NBC FDA Ampligen story on its national site to get it more coverage. And please call NBC directly and let them know this is an important story they don’t want to miss. Bob, who is in the third day of his hunger strike, tells how below;

“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 please 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

Dr. Steve Chilinski On His Experience With Ampligen

Let Our Federal Officials Know

Please also 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.

Please also email or call your Congressional Representatives and Senators (look them up http://www.contactingthecongress.org/) 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!

To: kathleen.sebelius@hhs.gov,

Subject: CFS Patient starts Hunger Strike for approval of Ampligen

“Long-time ME/CFS patient Robert Miller from Reno, Nevada began a hunger strike in advance of the FDA’s Feb. 2nddeadline 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 for patients. More than 3,900 people have signed the petition you’ve received. Please don’t let the FDA reject the only medication CFS patients can hope for any time soon.”



Years Ill:


Please sign the FDA/Ampligen petition (over 4,200 signatures now) if you haven’t.

Please ‘like’ and support a new Cause page on Facebook “Hunger strike For Ampligen Approval for CFS”


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