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Join urgent email action to get FDA approval of Ampligen - by Thurs 6th December'.

Discussion in 'Action Alerts and Advocacy' started by BobM, Dec 2, 2012.

  1. BobM

    BobM

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    Call to Action for First Drug For ME/CFS: the Ampligen FDA Advisory Hearing
    URGENT: ME/CFS Patient "A C T I ON"(A Call To Impact Our (me/cfs)Nation



    For All ME/CFS Patients,Families and Friends (U.S. & Non U.S.)Organizers: Robert Miller and TEAM ______ Contact: 511bobmiller42@gmail.com
    For the first time people with chronic fatigue syndrome have the opportunity to make a difference in getting a drug approved for their disorder. At a public hearing on Dec. 20th an FDA advisory committee will advise whether Ampligen should become the first approved drug for chronic fatigue syndrome. As a part of that process they will review all comments produced by the ME/CFS community that are received by Dec 6th.

    Ampligen presents a huge opportunity for the ME/CFS community. Not only has it been in the FDA pipeline for over two decades, it’s been the only drug under review for ME/CFS during that time. There are no other drugs waiting in the wings, no other drug companies developing drugs for this disorder; this is the culmination of decades of hope and the opportunity is large.



    History has taught us that once a drug gets approved for a disease, other drugs, legitimacy and research dollars follow.

    Let’s make history and get the first drug for ME/CFS approved by taking "A C T I ON" and letting the FDA Advisory Committee know the urgency you feel for FDA approved drug treatments for this disorder.
    Please send in your email by December 6th, and let the Committee know what it is like to live with ME/CFS daily and how needed treatment options are.

    Our Advocacy Community will update you when other significant meetings are coming up, including the FDA Stakeholder meeting in the spring and issues dealing with CDC and NIH but right now we need the Advisory Committee hear from Our Patient Community on this issue.

    This drug is our AZT to the ME/CFS community. If approved we believe it will be just the beginning of treatments to come.

    A Sample Email Template is below

    Send To: Email address: AAC@fda.hhs.gov
    Subject line: Treatment for Chronic Fatigue Syndrome - Ampligen
    To The Advisory Committee Reviewing Ampligen:
    My name is ___________________ I have had CFS for more than ___ years. Before I became ill I had a life that was __your story here_____. My life since having CFS has been_______ your story here_____. We need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus. We are not second class patients. According to CDC studies, CFS is comparable to MS, late-stage AIDS, Lupus, rheumatoid arthritis, heart disease, end-stage renal disease, COPD and the effects of Chemotherapy. CFS/ME effects every moment of my life. We have seen and heard of patients doing well on Ampligen. Give this community Hope by approving Ampligen. We want our lives back.

    Thank you,
    Full Name
    Address Here

    (Please Cc: emails to Robert Miller at: 511bobmiller42@gmail.com
     
    HTree, allyb, Little Bluestem and 5 others like this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks Robert and co. for being on top of this crucial issue! Sent mine in.
     
  3. Sasha

    Sasha Fine, thank you

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    December 6th! Argh! That's Thursday! I'll do my email tonight.

    Come on UK, and everybody else - if this is passed in the US, it'll be the pebble that starts the treatment landslide. Everyone will benefit!
     
  4. Sasha

    Sasha Fine, thank you

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    Done! It took me 7 mins 33 secs (thank you, oven timer).
     
  5. Sasha

    Sasha Fine, thank you

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    Just made a signature that everyone can cut and paste into their own signature - please help yourselves.

    To make a signature, pull down the drop-down menu from your name (top bar on the right), hit 'signature' and bung it in the text box and save it. Easy! Takes seconds! And your signature appears on every message you've ever written.
     
  6. Sasha

    Sasha Fine, thank you

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    Bumping!

    If you do just one thing for ME this year, please let it be this - it's HUGE.

    Just takes minutes!
     
    justinreilly likes this.
  7. Nielk

    Nielk

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    I just sent my letter out.
     
  8. Sasha

    Sasha Fine, thank you

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    Great, Nielk!

    This thread has had 100 views so far, I hope that's going to be 100 emails! :) It's very quick to do.
     
    Nielk likes this.
  9. maryb

    maryb iherb code TAK122

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    E-mail sent, we need to be pro active where we can. whether we believe Ampligen will get to the UK, who knows, but if it benefits some in the USA its worth our effort.
     
    justinreilly and Sasha like this.
  10. Sasha

    Sasha Fine, thank you

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    Thanks, maryb.

    If the FDA passes Ampligen for the US, there'll be an effective immune system treatment giving large and measurable treatment benefits to patients. It will be very hard for other countries' governments to deny their own citizens such a treatment. Even if they tried to do so on grounds of cost, at the very least they'd have to admit that ME is an immune disorder and it would change the face of research and treatment here. And in how we're seen by the public. We'd be well placed to start pulling in donations from the public to our own research charities and getting other treatments through.

    I really think that FDA Ampligen approval would have HUGE benefits for ME patients worldwide.
     
    justinreilly and BobM like this.
  11. BobM

    BobM

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    Thank you All for supporting this ACTION, we can make a huge leap here for our patient population. Thanks Sasha & Kina...

    Bob Miller
     
    justinreilly and Sasha like this.
  12. Stukindawski

    Stukindawski

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    Sent and CC'd! I like this kind of positive pro-active stuff. Fingers crossed!
     
  13. Purple

    Purple Bundle of purpliness

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    Sent. Did anyone who sent the email receive an acknowledgment of their email?
     
  14. BobM

    BobM

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    I must tell you All that patients from all over the World are sending ACTION emails and it is extremely tough to read some of them, even as a patient who has dealt with much for 30 years now. Patients Need Treatment. Thank you All for supporting this ACTION.

    Bob Miller
     
    HTree, justinreilly and Sasha like this.
  15. monobear

    monobear

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    Purple, I sent in mine early this afternoon and received an acknowledgement email a few hours later.
     
    Purple likes this.
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Thank-you very much for posting this. I will be sending an e-mail.

    I hope I am not being overly picky. I think good grammar is important to making a good, and effective, impression. Despite the fact that it passes my grammar check, I do not think that “Just like AZT for AIDS or Tysabri for MS or Benlystra for Lupus.” is a complete sentence. Would someone who knows more about grammar than I please comment.
     
  17. Adster

    Adster Senior Member

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    Email sent, thanks to Bob for making it quick and simple.
     
  18. Sasha

    Sasha Fine, thank you

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    I did, but quite a few hours after I sent it. If it's an auto-reply it's a pretty slow robot! I think it's some poor admin assistant, so the fact that it was slow maybe means they're getting a lot of mail.

    Let's keep going!

    Please, if you haven't emailed yet, do it now!
     
    justinreilly likes this.
  19. Sasha

    Sasha Fine, thank you

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    Hi, Little Bluestem. You often see this kind of sentence structure in fiction for emphasis, as a deliberate breaking of the 'rules' of grammar to get the reader's attention. I think the people reading this will be focusing on the message. If you'd rather edit your own message, that's fine, of course.
     
  20. lartista

    lartista Senior Member

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    this is my testimony!
     
    HTree and Ember like this.

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