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

February 6, 2013

by Sasha

NIH on Chronic Fatigue Syndrome

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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27 comments

{ 27 comments… read them below or add one }

snowathlete February 6, 2013 at 7:01 pm

Thanks Sasha, a very helpful article!

Ember February 6, 2013 at 8:32 pm

I'm reminded of Dr. Ian Lipkin's words concerning the efficacy of political pressure:

Deborah Waroff: What do you think are the optimum things that can be done to really speed along the progress toward a cure within my lifetime?

Dr. Ian Lipkin: I've been involved with a number of organizations that have been successful in promoting research. The most successful, of course, was the HIV AIDS community and thereafter the Autism community. And there are others that have been more successful, less successful.

There is no question but that your political leadership will respond to pressure. So, this may not be a very popular thing to say with everyone because, at the National Institutes of Health, we like to focus on basic science and applied science without talking about specific diseases. But the fact remains that if you say there's going to be a certain amount of work that's going to be focused in a particular area, and you can focus it in that way, then people will work in that area.

So I would encourage you to try to motivate your colleagues, people with this disease or related diseases, their families and loved ones to try to request additional support in these areas. This is what happened with Autism, and it made a huge difference in the investment at the level of the National Institutes of Health and even in the Department of Defence.

Again, this is very difficult for people who have a chronic illness which is debilitating. It's very difficult to be, you know, aggressive in pursuing that sort of support. But I think that's what you can do.

Mark February 6, 2013 at 10:39 pm

One thing that strikes me is that the campaign goal of funding for a clinical trial of Ampligen is, I think, an excellent one: eminently reasonable, seemingly achievable, potentially enormously valuable, timely, and hard to make a case against. It is a reasonable thing to demand.

I've been reflecting on the situation in the UK, the impasse in attempts at political and reasoned arguments, and the possible necessity of direct action, and one thing I think is that a demand for clinical trials of ampligen and rituximab makes an awful lot of sense.

Campaigns demanding trials of ampligen and rituximab would be very hard indeed to argue against. Both have shown enormous promise and have research that at least suggests they may be highly effective for many patients who have no other treatment available. The only reason given why neither are available is because it's said there isn't enough evidence (that's highly debatable in the case of ampligen). The authorities always seem to claim they agree with the need for more research and that more funding of medical research is not being blocked. How then could they argue against funding clinical trials of these drugs?

And public campaigns focusing on clinical trials of ampligen and rituximab would also draw attention to the existence of these drugs, and thus highlight what evidence there is behind medical treatments – double-blind in the case of Ampligen. At the very least, such a campaign would highlight that there are other potential treatments around, which rarely enters the debate in the UK. It's much harder to get your message heard and get the actions you want when you try to say "this psychiatrist is lying to you" than when you ask "why are they failing to fund a trial of these promising drugs?"

How might you get such a campaign visible in the UK, I wonder? A clear and sustained focus on this demand across all the patient organisations seems important. Bob has perhaps suggested a way forward for media coverage in the form of non-violent direct action. His is a brave, radical, and frightening choice and I am increasingly worried for him. I find myself pondering what kind of action might get press coverage over here. The timing has to be right – like when another funding round is due or announced.

And by the way, how long is it since that famed £1.5m from the MRC for ME/CFS research in the UK was announced and awarded? We must be well past the point where that translates to the business-as-usual $800k/year – or even less. How did they get away with that bit of spin, I keep asking myself? A really cheap trick: no money for a year, then double money announced with a fanfare to relieve political pressure, then no money for another year or two…present a cut as an increase…cynical stuff…

I'm rambling again, sorry…:rolleyes: Just wondering where this might be leading and where we might take it, with May 12 approaching. Any bright ideas out there?…

Sasha February 7, 2013 at 12:59 am

Bob has posted on Health Rising just now that he'd like to be copied into our emails: 511bobmiller42@gmail.com

I'll try to get that edited into the article.

Sasha February 7, 2013 at 11:25 am

Bob posted this on Health Rising in answer to my query about whether we should email once or daily (my bold):

Emailing them daily has them flustered…I would alter between emailing the agencies and you home state Representatives. Remember it makes no difference if you are a Dem. or a Republican, contact those who represent your state, we are contacting Both as they represent the state of Nevada and I am a resident. So keep emailing and call if you can. FDA stated they are getting thousands of emails…If your state Rep. gets a hundred that is overwhelming to them.
Thanks to All,
Bob

Flustered! I like it. :cool:
Since I'm in the UK and have no representative, I'll email the federal people daily.

SpecialK82 February 7, 2013 at 12:06 pm

For some reason the other active thread on the Hunger Strike has dissappeared for the last few hours, maybe it is being merged?? So I will post this info here.

I called Assistant Secretary Koh's office a few hours ago, and the will only put you through to him if he is expecting a call. I told the person that I was calling to discuss Chronic Fatigue Syndrome and he said that they have a point person set-up to take those calls.

Her name is Diane Gianelli (sp) and her number is 202-690-7169. She did not answer the phone, so I left a detailed message asking Dr. Koh to intercede with K. Sebelius and get the NIH to run clinical trials of Ampligen. I said that we have heard for years in CFSAC that they agree to support this illness, and we want to see some action.

I'm sure all calls will just be collected on this Voice Mailbox and then someone will tally up the calls at the end of the day (week) and tell Dr. Koh the total. So please call – let's fill up that box!

JohnnyD February 7, 2013 at 12:30 pm

My sister talked to Diane Gianelli yesterday. Diane took down her name, address and telephone number. My sister commented that they must be getting lots of calls and Diane confirmed that, yes they are.

So keep the pressure on.

Merry February 7, 2013 at 1:16 pm

I just left a message at Diane Gianelli's voice mail. Thanks for the updated information, SpecialK82.

RivkaRivka February 7, 2013 at 2:38 pm

The article above says, "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.” "

So I called just now and found out that Koh's secretary will tell you that you should instead call Koh's communications office. But while you are on the phone with her, ask if you can leave a message for Koh anyway.

So then I also called Koh's "communications team" (i.e. press office): 202-205-0143. I left a voicemail message. We can also email them at: ashmedia@hhs.gov

Sasha February 7, 2013 at 3:06 pm

A couple more things on Bob's Facebook page, reposted below.

http://www.facebook.com/HungerStrikeForAmpligen

It's a good page to keep an eye on! Clearly, Bob will be weak now and I'm sure they're all exhausted so not able to repost all over the place – also, we're not able to re-edit the article often enough to keep up with developments (I don't have edit access) and are handicapped by timezone issues. I suggest keeping an eye on Bob's Facebook page and what people are posting on this thread to keep current with things.

Robert has asked that we all call Assistant Secretary Koh. He has designated a point person for these phone calls. Her name is Diane Gianelli and her direct number is 202-690-7169. Calls are going to her voice mail. So, let's fill up the voice mail. I'm sure Dr. Koh will get a tally.
Everyone on Twitter – please retweet CourtneyA999. That's Courtney Miller. We need a buzz on twitter. Patient action here is getting noticed inside agencies. Keep it up!! It is working!

Sasha February 7, 2013 at 3:18 pm

Just had this link to a new piece from Randy Osborne, who wrote that great article on the pharma news site mentioned in my article:

http://bioworld.blogs.bioworld.com/2013/02/07/on-the-gom-boo-ampligen-and-holding-out-hope/

Excellent. Just excellent. We're lucky to have this guy writing about us. Please email and thank him if you haven't already – the email address is randy.osborne@bioworld.com

Merry February 7, 2013 at 3:28 pm

Hi, Sasha. Randy Osborne emailed me the link to this latest (in response to my thanks for the previous). Just finished reading and writing back to him. Wow. What a moving article. Everyone should read this. Amazing.

Edit: copied link from Sasha's post:

http://bioworld.blogs.bioworld.com/2013/02/07/on-the-gom-boo-ampligen-and-holding-out-hope/

And I echo Sasha's suggestion to write and thank Randy. We need to cultivate relationships with journalists who care.

caledonia February 8, 2013 at 12:19 am

I just tried to call, and apparently, Ms. Gianelli doesn't receive messages at 1am. Gee, I wonder why? lol
Maybe I'll join Twitter just so I can Tweet something.
I hope Bob is doing ok.

Sasha February 8, 2013 at 10:31 am

Some very moving comments on Randy Osborne's article:

http://bioworld.blogs.bioworld.com/2013/02/07/on-the-gom-boo-ampligen-and-holding-out-hope/#comments

Please go over there and read it, if you haven't already – he deserves the traffic to show his editor. It's a really excellent, compassionate piece.

Sasha February 8, 2013 at 10:34 am

Just seen this from Courtney (posted 17 hours ago, that's how well I can navigate a Facebook page even when I'm looking really, really hard):

I would ask that everyone call national NBC (212-664-4444) and leave a message asking them to pick up the story that was run by Reno NBC two days ago about the CFS hungerstriker. Tell them you have the illness (or know someone) and want to see it! Then call your local NBC station and do the same ~Courtney

Sasha February 8, 2013 at 10:42 am

Just sent today's email…

Sasha February 8, 2013 at 2:30 pm

Posted on Bob's Facebook page an hour ago:

Just to update, I am ok. I'm being monitored closely, and I want everyone to know that all you are doing is working! Patients are being heard! Thank you for all the work you are doing.

Ember February 8, 2013 at 3:43 pm

San Francisco Chronicle-2 hours ago

By Jeff DeLong, Reno Gazette- Journal
Updated 12:20 pm, Friday, February 8, 2013

Sasha February 8, 2013 at 3:59 pm

Now that same piece is in a San Antonio (Texas) site:

http://www.mysanantonio.com/news/ar…ger-strike-after-FDA-rejects-drug-4263480.php

Give them all traffic, folks…

alex3619 February 8, 2013 at 8:51 pm
WillowJ February 8, 2013 at 9:40 pm


alex3619

https://www.facebook.com/permalink.php?story_fbid=10151421635339672&id=154801179671

Hunger strike is over.

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. :)

taniaaust1 February 9, 2013 at 1:32 am

thanks for letting me know.. Ive been concerned thou I believe he was doing the right thing.

caledonia February 9, 2013 at 2:08 am

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?

heapsreal February 9, 2013 at 2:33 am

i hope he has a good piece of rib fillet to break the drought. he deserves it.
good on ya Bob!!

Sasha February 9, 2013 at 3:09 am

What a relief! I'm really glad he's stopped. I was getting very worried about him.

Edit: I'll start a new thread on this so the news gets out.

SpecialK82 February 9, 2013 at 1:01 pm

Great job everyone – onto phase two – high fives all around! :balloons:

JohnnyD February 9, 2013 at 6:32 pm


caledonia

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.

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