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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 6, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
    SOC likes this.
  2. snowathlete

    snowathlete

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    Thanks Sasha, a very helpful article!
     
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  3. Ember

    Ember Senior Member

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

    Mark Acting CEO

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    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?...
     
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  5. Sasha

    Sasha Fine, thank you

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    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.
     
  6. Sasha

    Sasha Fine, thank you

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    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.
     
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  7. SpecialK82

    SpecialK82 Senior Member

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    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!
     
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  8. JohnnyD

    JohnnyD Senior Member

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    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.
     
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  9. Merry

    Merry Senior Member

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

    RivkaRivka Senior Member

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    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
     
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  11. Sasha

    Sasha Fine, thank you

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    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!
     
  12. Sasha

    Sasha Fine, thank you

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    Merry likes this.
  13. Merry

    Merry Senior Member

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    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.
     
  14. caledonia

    caledonia

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    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.
     
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  15. Sasha

    Sasha Fine, thank you

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    SpecialK82, WillowJ and snowathlete like this.
  16. Sasha

    Sasha Fine, thank you

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    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
     
  17. Sasha

    Sasha Fine, thank you

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    Just sent today's email...
     
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  18. Sasha

    Sasha Fine, thank you

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    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.
     
  19. Ember

    Ember Senior Member

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    SickOfSickness and Sasha like this.
  20. Sasha

    Sasha Fine, thank you

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    Kati likes this.

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