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.
To: kathleen.sebelius@hhs.gov,
margaret.hamburg@fda.hhs.gov,
janet.woodcock@fda.hhs.gov,
sandra.kweder@fda.hhs.gov,
howard.koh@hhs.gov,
bobmiller42@gmail.com
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.”
Name:
Address:
Years Ill:
Petition
Please sign the FDA/Ampligen petition (over 4,200 signatures now) if you haven’t.
Great story, Cort, and that’s a great idea to like, tweet, etc. that local NBC story – I’ll post about that on Phoenix Rising.
I must admit I don’t know what some of those things are! I think I just managed to at least ‘like’ it on Facebook, though.
What accounts do people need to do each, and what does it do if you do the action? For instance, if you have a gmail account, does that let you googleshare it (or whatever the term is)? Does that mean it sends a message to your whole email list or something?
I’m in the Stone Age here!
Great to have a way of influencing NBC that non-US people can join in! 🙂
all ME/CFS community is around Bob , we have to push media, tv radio etcc to get nationl visibility on bob’s hunger strike!!
The info below was posted on Phoenix Rising – I don’t know what to make of it in terms of its implications for the current decision on Ampligen. There are some representatives from disease organisations but none from ME groups.
********
The FDA is going to hold a little webinar on February 4th an 5th. The following was posted to the federal register on 01/15/2013.
Creating an Alternative Approval Pathway for Certain Drugs Intended to Address Unmet Medical Need; Public Hearing
The Food and Drug Administration (FDA) is announcing a public hearing to obtain input on a potential new pathway to expedite the development of drugs, including biological products, for serious or life-threatening conditions that would address an unmet medical need.
The drug’s safety and effectiveness would be studied in a smaller subpopulation of patients with more serious manifestations of a condition. Such a pathway could involve smaller and more rapid clinical trials than would occur if the drug were studied in a broader group of patients with a wide range of clinical manifestations.
The labeling of drugs approved using this pathway would make clear that the drug is narrowly indicated for use in limited, well-defined subpopulations in which the drug’s benefits have been shown to outweigh its risks.
The purpose of the public hearing is to obtain information and comments from the public on the need for and feasibility of this pathway and its potential advantages and disadvantages.
Full posting here:
https://www.federalregister.gov/art…-drugs-intended-to-address-unmet-medical-need
Thanks Sasha…that’s kind of amazing given the situation we’re in right now with the FDA not giving the slightest amount of ground on Ampligen…It’s good to see and rather painful at the same time!
Please ‘like’ and pass around a new Facebook Cause page for Ampligen approval and Bob’s hunger strike. What a superb picture with Bob and President Obama it has….
Tomorrow by the way is D-Day for Ampligen….we’ll hear the news tomorrow, I hear.
Is there a link to that page?
How disappointing that no progress has been made with the name issue, hence definition and diagnostic codes are lacking. How can anyone take this illness seriously when there is such a broad spectrum of misunderstanding? The FDA would probably approve if they could see a well-defined patient population, with assistance from more than patient advocacy attempts. People laugh at me when I try to explain what just consumed 21 years of my life, as chronic fatigue syndrome sounds old fashioned and of personal choice! The neurological illness of Myalgic Encephalomyelitis is serious and has met the international consensus, why not America? I am one of the fortunate ones, as I am an Ampligen success case. I was able to take back a large portion of my life, greatly reduce the suffering, and the fog lifted. I, like others, want to know more about Ampligen, and want to encourage patients and lead them to correct information. Unfortunately, the window of opportunity is growing smaller, instead of larger. Why aren’t there more compassionate care guidelines, financial assistance, and doctors being trained to recognize, respect and treat the many illnesses represented here? I find it overwhelming to conjoin different illnesses when advocating for a medication that has helped so many with M.E. I know it shows future promise for other uses, yet I am only familiar with its’ use for my condition. I still can’t believe that so many self-diagnose and get very little medical attention, or get lost in systems of healthcare inappropriate for them. Medical professionals had to get training quickly to deal with HIV/AIDS, why not this condition? M.E. kills, and to lose lives due to lack of attention from our government shows a lack not only on their parts, but a loss of representation from everyone. These patients are sick, bed bound and shouldn’t have to decline medically.This is not a new war…yet confusion reigns among the suffering ranks. This is the time for our political leaders to actively listen, and stop needless death. What is the current population rate of those who could benefit from Ampligen? Thanks to Cort, Bob, Kevin and all of you for using the internet to help these patients….
Now is the time for the medical community to come on board as they did in the early eighties when HIV started to rear its ugly head. ME/FM have ruined many lives and will continue to do so, unless it gets the recognition, research dollars and realistic treatments that it deserves. This illness damages brains, the central nervous system, (systemic and autonomic). Research now has specifically shown this. Physicians, it is time to wake up and treat these patients with the dignity and respect that human beings deserve. We are not faking, we are not malingerers, we are not depressed, we are not psychiatric patients. We are physically ill and left to suffer without proper care and treatment and not enough energy left in our bodies to fight for the treatments we deserve. (Author of the bookJudging Judi that describes the medical abuse she survived through and now advocates for others as well as herself)
What can we do to help with bringing more journalists and media outlets on board to cover this? I am not well enough to research myself, but if you can tell me who to contact, I will.
Whichever way the Ampligen decision goes, it can only help our cause to have more people aware of the situation, aware of how bad things can get at the severe end of our spectrum, and aware of the lack of options to help us. I don’t think Bob’s efforts could possibly fail to do good if we can get that word out further.
Glad it’s hitting the news Cort – this devastating state of affairs.