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

February 1, 2013

by Sasha

Bob-Miller-2011-Ottawa-ConferenceBob 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.govmargaret.hamburg@fda.hhs.gov, janet.woodcock@fda.hhs.gov

sandra.kweder@fda.hhs.gov, howard.koh@hhs.govash@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:

  

Support Phoenix Rising

 

69 comments

{ 69 comments… read them below or add one }

Sasha February 1, 2013 at 1:11 pm

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

Sasha February 1, 2013 at 1:28 pm

Finally blundered my way to Bob's Facebook page for those who would like to keep up to date with him:

http://www.facebook.com/profile.php?id=1158453626

SickOfSickness February 1, 2013 at 2:43 pm

Thanks for the template.

maryb February 1, 2013 at 2:57 pm

Sent the e-mails – hope something good comes of his efforts.

Sasha February 1, 2013 at 2:58 pm
SickOfSickness

Thanks for the template.

I think you've got Mark to thank for that! :)

Nico February 1, 2013 at 3:06 pm

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

Sasha February 1, 2013 at 4:05 pm
Nico

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.

GcMAF Australia February 1, 2013 at 4:14 pm

Done and dusted
from Australia
and for K2
No Worries
&
She'll be Apples

Sasha February 1, 2013 at 4:19 pm
GcMAF Australia

She'll be Apples

No idea what that means but it sounds promising!

GcMAF Australia February 1, 2013 at 6:10 pm
Sasha

No idea what that means but it sounds promising!

Australian saying
dont worry things will work out,
might take a bit of time tho
dont worry be happy
i know it is a big call

Tally February 1, 2013 at 6:26 pm

Please help non-native speaker to send this e-mail. Should I add "Dear Sirs and Madams" at the beginning?

Sasha February 2, 2013 at 2:07 am
Tally

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!

Sasha February 2, 2013 at 2:11 am

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

Merry February 2, 2013 at 7:41 am

Last evening I emailed NBC (using the address Nico provided) to ask that the story produced by their Reno affiliate be carried nationally.

Research 1st February 2, 2013 at 7:55 am

Hi, am I correct in thinking the second Ampligen FDA meeting is today or is it monday? Thank you.

Sasha February 2, 2013 at 8:25 am
Research 1st

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.

wdb February 2, 2013 at 8:53 am

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.

Research 1st February 2, 2013 at 9:15 am

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!

Sasha February 2, 2013 at 10:45 am

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.

BEG February 2, 2013 at 1:01 pm
Merry

Last evening I emailed NBC (using the address Nico provided) to ask that the story produced by their Reno affiliate be carried nationally.

Doing the same, Merry.

caledonia February 2, 2013 at 1:53 pm
wdb

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.

If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

I'm not a big believer in conspiracy theories, but think about this – if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?

maryb February 2, 2013 at 2:08 pm

People have to do what they feel is right, I couldn't go on a hunger strike but Bob is obviously passionate about what he is doing and I fully support his right to do it. If Ampligen is approved okay it may not be because of Bob but good on him for doing what he believes in, publicity about the seriously ill with ME/CFS is NOT what the government want to see either in the UK or the USA.
If it is approved watch out Wessley, it means as Caledonia said,

'if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham'

That applies to the UK too.

Kati February 2, 2013 at 3:04 pm
caledonia

If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

I'm not a big believer in conspiracy theories, but think about this – if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?

It makes you wonder, also, why Peter White and his firends managed to publish a paper on CBT and GET hours away from FDA deadline to providing an answer.

wdb February 2, 2013 at 3:31 pm
caledonia

If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

I'm not a big believer in conspiracy theories, but think about this – if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?

I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.

jimells February 2, 2013 at 4:00 pm

Even His Imperial Highness Steven Harper (prime minister of Canada) blinked and agreed to a meeting with First Nations Chiefs when Chief Teresa Spence went on an extended fast. Chief Spence's action received wide coverage in Canada (Canada? Isn't that a U.S. territory??) and stirred up much heated debate on the poor treatment and living conditions of Canada's native peoples.

There's no guarantee that Bob Miller's action will be successful, but doing nothing is a recipe for failure.

Kati February 2, 2013 at 4:01 pm

wdb, I wonder what other extreme tactics can be used?

I am not aware of any other tactics that have worked in inciting action from the governments and agencies.

What Robert is doing is definitely extreme- however nothing that's been done before has worked. The truth is that ME or CFS or whatever you want to call it is not a priority for our governments, and is not something governments want to touch either- it doesn't give political parties a better image-

Status quo sounds so inviting for them.

It's time that things change.

Recently there was a hunger strike in Canada by a chief of an aboriginal reserve, she was asking for a meeting with the prime minister. She slept in a tee pee near the Parliament and generated lots of publicity and newscast from all around the country. That lasted 6 weeks. She was not eating but drank tea and fish broth.

jimells you beat me to it by 1 minute !

Nico February 2, 2013 at 4:12 pm
Merry

Last evening I emailed NBC (using the address Nico provided) to ask that the story produced by their Reno affiliate be carried nationally.

I have also contacted a local news reporter in our city via email her FB page. She is fully recovered from ME/CFS…works…got married….baby. Anyway…a few years ago she did a 5 day piece on ME/CFS (I didn't get to see it). I don't know if it's too tangential to contact her, but I did anyway. I actually sent her Cort's new link and referred her to PR as well. If anyone cares to know who she is this is her FB page. You can find her private news room email in the about section.
https://www.facebook.com/pages/Jennifer-Johnson/142415085792722

GcMAF Australia February 2, 2013 at 4:43 pm

Well a number of sufferers are very very sick
some think well what if I collapsed so a hospital had to take me in!
A lyme person died without treatment
I dont agree with a hunger strike as such, would not encourage it, but I will support him in any way i can.

SOC February 2, 2013 at 7:58 pm
wdb

I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.

I think those of us with mathematical/scientific inclinations sometimes have a hard time understanding the value of not entirely logical techniques. A large part of the problem for us is that it's not logical scientific people making the decisions — it's people that respond to emotional arguments more than logical ones.

I realize this is not true of all scientific people, but I have learned that I have to leave these kinds of things up to political and public relations types who understand how playing on the emotions affects policy. Journalists are attracted to stories like Bob's hunger strike and we need journalists to start paying attention to us. This is definitely not my area and it confuses the heck out of me. :confused:

Sushi February 2, 2013 at 9:33 pm

Update from Bob Miller today:

Sasha February 3, 2013 at 2:49 am

That's a worrying update – this is clearly tough on Bob. Let's support him all we can.

wdb February 3, 2013 at 4:32 am
SOC

I think those of us with mathematical/scientific inclinations sometimes have a hard time understanding the value of not entirely logical techniques. A large part of the problem for us is that it's not logical scientific people making the decisions — it's people that respond to emotional arguments more than logical ones.

I realize this is not true of all scientific people, but I have learned that I have to leave these kinds of things up to political and public relations types who understand how playing on the emotions affects policy. Journalists are attracted to stories like Bob's hunger strike and we need journalists to start paying attention to us. This is definitely not my area and it confuses the heck out of me. :confused:

Well lets hope there was a public relations expert behind this who has done their research and knows what they are doing and that Bob is seen as someone that needs Ampligen more than someone that needs psychological intervention. I won't say any more other than to wish Bob and the campaign good luck.

Merry February 3, 2013 at 8:50 am

The issue of treatment for ME/CFS patients is a social justice issue, first and foremost, rather than a scientific one. To address the neglect of ME/CFS patients by governments around the world, political, nonviolent action is called for.

Dr. Gene Sharp listed the methods of nonviolent protest and persuasion in his book The Politics of Nonviolent Action, Volume 2, published in 1973. Hunger strike is number 159b on the list, compiled from Dr. Sharp's book, at the Albert Einstein Institute's website:

http://www.aeinstein.org/organizations103a.html

snowathlete February 3, 2013 at 9:29 am
wdb

I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.

Extreme action in the ME/CFS community has been about a minority of people adopting an extreme but also stupid approach. Taking extreme action against the opposition is not going to win you any fans, but taking extreme action against yourself as a demonstration is good because it puts the focus on you, not the opposition. Extreme but appropiate action can be very positive. Think Gandi and The Suffragettes. Personally, I think extreme action like Bob's (note, I am not condoning all extreme actions) is all that is left to a group like ours that is so repeatedly downtrodden. I think we should do more of it. We have tried making rational arguments and it doesnt work because there is a group of people that act against that rationality with false information and propoganda. Bob's strategy escallates above that business and forces people to take a serious look at the real problems instead of just ignoring them. To date, we generally make a little noise, but ultimately go away into the shadows. Bob is doing something noticable.

Nico February 3, 2013 at 9:46 am
Merry

The issue of treatment for ME/CFS patients is a social justice issue, first and foremost, rather than a scientific one. To address the neglect of ME/CFS patients by governments around the world, political, nonviolent action is called for.

Dr. Gene Sharp listed the methods of nonviolent protest and persuasion in his book The Politics of Nonviolent Action, Volume 2, published in 1973. Hunger strike is number 159b on the list, compiled from Dr. Sharp's book, at the Albert Einstein Institute's website:

http://www.aeinstein.org/organizations103a.html

AGREE! I was thinking of contacting Human Rights Watch about this. Also, in my daydreaming about this…. can we sue (class action) the FDA for some kind of human rights violation? I guess the verdict may be in on Monday, 2/4.

Ok, adding an edit here. I just contacted Human Rights Watch through their Facebook message function. I added this link/thread.

BEG February 3, 2013 at 9:56 am
Merry

The issue of treatment for ME/CFS patients is a social justice issue, first and foremost, rather than a scientific one. To address the neglect of ME/CFS patients by governments around the world, political, nonviolent action is called for.

Dr. Gene Sharp listed the methods of nonviolent protest and persuasion in his book The Politics of Nonviolent Action, Volume 2, published in 1973. Hunger strike is number 159b on the list, compiled from Dr. Sharp's book, at the Albert Einstein Institute's website:

http://www.aeinstein.org/organizations103a.html

(The book Merry mentioned by Gene Sharp is available for Kindle rather cheaply.

When the Syrian revolutionaries were just beginning, they consulted with Gene Sharp, who, of course, recommended nonviolence, and told them they needed to change the system by working within its institutions. Haven't we tried that with the CFSAC? Merry's post reminds me of Henry David Thoreau's, Civil Disobedience, who also advocated nonviolence. Aren't we doing that with all our emails?

IMHO, I think that maybe Bob thought it was time to notch it up just a tad. Certainly his actions are nonviolent. I believe the only disappointment is that more aren't joining the hunger strike and being very vocal about it.

In the meantime, the rest of us need to keep up the email campaign. Do it NOW! (see Sasha's signature below.)

Nico February 3, 2013 at 10:01 am

I am going to forward my email to NBC news to Human Rights Watch NYC.
http://www.hrw.org/contact-us#NewYork

SpecialK82 February 3, 2013 at 10:16 am

Does anyone remember the name of the man that is a reporter for Huffington Post, he has ME/CFS and did a story on it within the past year or so? I'm sure he would love to pick up this story.

Also, I wonder if we should start writing ABC, CBS, and maybe some cable news channels – we could link to the local news show. Probably need to write that what is going on with Robert is just the tip of the iceburg – that there is a HUGE story here, if they want to investigate.

Nico February 3, 2013 at 10:18 am

I have also cc'd into my message to Human Rights Watch this org.
https://www.facebook.com/DREDF.org?ref=ts&fref=ts

OK, I better slow down my posts. :sluggish:

caledonia February 3, 2013 at 11:21 am
wdb

I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.

Was Ghandi perceived as nuts? No, he was perceived as an annoyance by the British and a hero by the people. Either way, he got what he wanted, which was to get India independent of British rule.

BEG February 3, 2013 at 11:36 am
Nico

I am going to forward my email to NBC news to Human Rights Watch NYC.
http://www.hrw.org/contact-us#NewYork

Done. Here is my submission to the Human Rights organization. It can also be tweaked to send to NBC, CBS, and ABC. Copy if you would like.

An NBC affiliate in Reno, NV, ran a story about a CFS (Chronic Fatigue Syndrome) patient, Robert Miller, who is speaking out concerning the FDA's possible disapproval of Ampligen, the first and only drug with proven safety, and effectiveness for a subset of the 1 million U.S. CFS patient population.

The patient community's need for treatment is so urgent that Bob is using a hunger strike as a tactic to attract attention to the forthcoming approval/disapproval of Ampligen. Ampligen is the first and only drug in the pipeline for CFS patients, and it’s been in the pipeline for twenty years. Ampligen has improved lives for so many. Ampligen patients were able to go back to prior employment. They rejoiced in the ability to live their lives again, but without Ampligen they will backslide right into their beds and remain there until another treatment comes around. With Ampligen’s disapproval, it is unlikely that CFS will see new drugs in the near future.

I would ask you to bring this newsworthy event to a broader audience, national if you will, so the public will know the plight of CFS patients with regard to Ampligen, a drug which the patient population has waited 20 years to hear "Approved!" by the FDA..

Respectfully,

YOUR NAME
YOUR CITY, STATE

Nico February 3, 2013 at 11:42 am

I also emailed Bill Moyers, but it has to be done through his web site. I didn't write too much, and attached Health Rising link (because it has some video testimonies).

BobM February 3, 2013 at 1:52 pm
caledonia
wdb

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.

If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

I'm not a big believer in conspiracy theories, but think about this – if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?

Hi all, Day 6… I am low on energy, but I would like to make a few thing clear:
1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

Thank you all for the support,
Bob Miller

Rooney February 3, 2013 at 1:54 pm

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

Good luck to us all. Take care Bob.

Sasha February 3, 2013 at 2:30 pm
BobM

Hi all, Day 6… I am low on energy, but I would like to make a few thing clear:
1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

Thank you all for the support,
Bob Miller

Thanks, Bob – you clearly have not only a sound mind but an exceptionally strong one! I hope you're taking very good care of yourself.

Kati February 3, 2013 at 3:50 pm

Bob has an update for Day 6.

Kati February 3, 2013 at 4:44 pm

Mindy Kitei blogs again today about Bob's hungerstrike

http://www.cfscentral.com/2013/02/hamlet-without-hamlet.html?m=1

Sasha February 4, 2013 at 3:01 am
Kati

Bob has an update for Day 6.

Thanks, Kati – Bob says in this video (in which he really doesn't appear well at all and says he was going into kidney failure so is now on a saline drip) that he wants us to keep emailing and (for US people) writing to our representatives, use our media contacts and send any contacts to him at bobmiller42 [a] gmail.com.

He says it's looking unlikely that Ampligen will be approved by the FDA and that the decision might come today – but he's clearly got some plans for what to do if the decision goes against us.

Sasha February 4, 2013 at 3:14 am
Rooney

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

Good luck to us all. Take care Bob.

Great stuff!

There's a press release out now:

http://forums.phoenixrising.me/inde…ess-release-do-you-have-media-contacts.21669/

Sasha February 4, 2013 at 3:21 am

Just sent another email telling them it's day 6 of Bob's hunger strike…

Enid February 4, 2013 at 8:10 am

I've done that Mark again and again – it's utter nonsence to say "safe" and yet not approve.

BEG February 4, 2013 at 8:11 am
Sasha

Just sent another email telling them it's day 6 of Bob's hunger strike…

Will be doing it, too!

SpecialK82 February 4, 2013 at 10:59 am
Rooney

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

Good luck to us all. Take care Bob.

Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

Hang in everyone and prayers going up for Bob!

John789 February 4, 2013 at 11:36 am

My prayers are with you Bob in your effort. I hope I am wrong, but it doesn't look good considering the approval date has come and gone with no news from the FDA.

Sasha February 4, 2013 at 11:39 am
SpecialK82

Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

Hang in everyone and prayers going up for Bob!

Good idea – she seems to have a LinkedIn page but I've no clue how to access that stuff:

http://www.linkedin.com/pub/amy-dockser-marcus/7/9b7/b24

Can she be phoned at the WSJ?

Kati February 4, 2013 at 11:46 am
Sasha

Thanks, Kati – Bob says in this video (in which he really doesn't appear well at all and says he was going into kidney failure so is now on a saline drip) that he wants us to keep emailing and (for US people) writing to our representatives, use our media contacts and send any contacts to him at bobmiller42 [a] gmail.com.

He says it's looking unlikely that Ampligen will be approved by the FDA and that the decision might come today – but he's clearly got some plans for what to do if the decision goes against us.

I don't believe Bob said he was on IV saline, he said he was drinking a saline solution

Sasha February 4, 2013 at 12:04 pm
Kati

I don't believe Bob said he was on IV saline, he said he was drinking a saline solution

My mistake! Thanks, Kati.

Kati February 4, 2013 at 12:12 pm

No problem Sasha, I wanted to make sure readers get the right info in case they pass it on.

caledonia February 4, 2013 at 1:48 pm

If you click on the YouTube link on Bob's video, then it will open up in YouTube. Then click on the Share tab. You can share the video on your Facebook, Twitter etc. I've been doing a Facebook share for each new video.

garcia February 4, 2013 at 1:50 pm
Sasha

Good idea – she seems to have a LinkedIn page but I've no clue how to access that stuff:

http://www.linkedin.com/pub/amy-dockser-marcus/7/9b7/b24

Can she be phoned at the WSJ?

Try amydmarcus{at}aol.com

RUkiddingME February 4, 2013 at 2:10 pm
Ember February 4, 2013 at 2:23 pm
garcia

Try amydmarcus{at}aol.com

Write to Amy Dockser Marcus at amy.marcus@wsj.com.

edit: Oops. I see now that this address didn't work for SpecialK82.

caledonia February 4, 2013 at 2:37 pm
BobM

Hi all, Day 6… I am low on energy, but I would like to make a few thing clear:
1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

Thank you all for the support,
Bob Miller

Who is the Sponsor and where is this Webcast? I would like to see it. Probably wouldn't hurt to send a copy of it to the journalists if that's part of our complaint.

Sasha February 4, 2013 at 2:52 pm
caledonia

Who is the Sponsor and where is this Webcast? I would like to see it. Probably wouldn't hurt to send a copy of it to the journalists if that's part of our complaint.

I think the sponsor was Hemispherx. I don't know if the webcast was posted.

dannybex February 4, 2013 at 3:37 pm
Sasha

I think the sponsor was Hemispherx. I don't know if the webcast was posted.

I don't think it was…weren't the circuits (or whatever you call 'em) overloaded, so portions of the webcast went down several times?

I have a feeling the decision has been made, and it's not a good one. Perhaps people should be swamping Hemipherx with emails rather than the FDA?

dannybex February 4, 2013 at 3:43 pm

From their website:


Contact:
Hemispherx Biopharma, Inc.,
Dianne Will, Investor Relations
(518) 398-6222
ir@hemispherx.net
HEB's Web Site: http://www.hemispherx.net

Kati February 4, 2013 at 3:45 pm

And dannybex, what do you want us to tell Hemispherx?

dannybex February 4, 2013 at 8:20 pm
Kati

And dannybex, what do you want us to tell Hemispherx?

Well, I'd like them to be more honest in the future. They've had a terrible track record when it comes to being open and honest with the public and with patients — lying in June 2009 suggesting that the FDA was close to approving Ampligen is just one example of many. They've implied they didn't have enough funds to run a new trial that the FDA asked for three years ago, even though the stock went up from something like 30 cents to over 4 DOLLARS in June of that year. There are records of the executives selling their own shares of Hemispherx stock — something that would only cause the stock to go down — why did they not BUY more stock? On and on and on…

I hope Bob will reconsider and stop his hunger strike, for his own sake.

Kati February 4, 2013 at 8:52 pm

Certainly Hemispherx is in hot water as they are dealing with investors's class action suit. I really wish we were a credible illness and that a respectable (and rich) pharma company to do drug development, clinical trials and get drugs approved at long last!

Previous post:

Next post: