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URGENT: Dec 6 Deadline to email the FDA's Ampligen Advisory Committee

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 4, 2012.

  1. LaurelW

    LaurelW Senior Member

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    Ampligen isn't any more expensive than some rheumatoid arthritis drugs. They key is getting Medicare and other insurances to pay for it.
    vli likes this.
  2. Cort

    Cort Phoenix Rising Founder

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    Here's what I sent it:
    To: Advisory Committee Reviewing Ampligen

    I've had ME/CFS for over 30 years… I tried everything I could. I went to the best doctors I could find and tried everything from antidepressants to thyroid medication to hydrocortizone to immune factors to hydrogen peroxide IV's...none of which, remarkably, made the slightest difference. After 30 years of experimenting my treatment protocol exists of watching my activity levels, eating a good diet and engaging in stress management techniques. That's it! That's the sum total of what the medical community has been to able to offer me for this disorder - when you think about it's essentially nothing.

    Throughout this period I have watched federal funding for this disorder decline even as NIH funding levels doubled. Even as government sponsored studies indicated this disorder afflicted from 1-4 million people in the U.S., many of whom become disabled, and cost the US economy tens of billions of dollars a year in economic losses, the federal government has never spent more than an pittance on this disorder. Adjusted for inflation it’s spending less money, just a few million dollars a year, than twenty years ago.

    So it's easy to understand why only one drug has been in the FDA pipeline for over a decade and why only one small pharmaceutical company has developed a drug for it. This disorder has always been too messy, too poorly defined, or didn't fit the right model or whatever. As funders threw up their hands, mouthed their platitudes about caring and then walked away, however, they walked away from a million or sick peoplewhose lives had been turned upside down and are like me, without access to any approved treatments.

    This long term neglect makes it easy to understand why it's so crucial for this community that this drug be given the chance to prove itself. There aren't any other Ampligen's waiting in the wings for the chronic fatigue syndrome community. There's NOTHING waiting in the wings. Ampligen is ground zero for the treatment hopes of this community and I've known people who've tried everything and found relief nowhere and got it with this drug. This community - the whole community - not just the scattered few who can afford it and live near one of the few doctors who provide it now - the whole community - deserves a chance with this drug.

    There's lots of work to do in chronic fatigue syndrome; the definition is poor, the disorder is certainly heterogeneous and subsets await to be uncovered. It’s the kind of messy situation that researchers and you probably abhor but please don't penalize the people with this disorder for the work that hasn't been done yet. If we wait for definitions to get cleared up another generation will spend another 30 years without assistance.

    It's hard for us to see any downside to giving Ampligen at least provisional approval. Ampligen has been used by doctors in the US for over a decade without serious side effects and there's enough evidence for efficacy to believe this drug will work.

    The potential upside is huge. If Ampligen improves the lives of just 20% of this population that's 200,000 people living more meaningful and healthy lives. Please give Ampligen the opportunity to prove itself and allow Hemispherx to market this drug, recoup its costs and develop the kind of rigorous studies we all want to see. If Ampligen works out then a new horizon in research and treatment will have been created and you will have made a huge difference in the lives of many.

    Thanks for your time.

    Cort Johnson
  3. Sasha

    Sasha Fine, thank you

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    Great letter, Cort. Really says it all about the big fat zero currently on offer to patients.

    But for those of you who haven't written yet, don't be intimidated :) - just use Bob Miller's template email, it's take you five minutes (took me seven but I went on a bit!).

    But do it now! Today's the last day we can email.
  4. gracenote

    gracenote All shall be well . . .

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    My letter is much simpler than Cort's. Robert Miller's template at the beginning of this thread makes it easy to get started. It only took me a few minutes to write this, and I encourage others to give it a try.

  5. Sasha

    Sasha Fine, thank you

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    That's another really great letter, gracenote!

    I only wrote a short para about my personal circumstances, on the principle of just getting it done rather than getting it done great.

    If anyone's worried that they'll have to write loads, don't be - just use Bob Miller's template, bung a sentence in about how long you've been ill, and send it off.

    But whatever you're going to do, do it nooooooooowwwwwwww!
    snowathlete and gracenote like this.
  6. snowathlete

    snowathlete

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    OK, seen as though people are sharing...this is what I wrote:

    To The Advisory Committee Reviewing Ampligen,

    I have had CFS for more than 4 years. Before I became ill my life was normal - I worked hard, loved my job, won awards for my work and I had real promise. I wanted to be an author. I wanted to leave a positive mark on society. I'm someone's son, someones husband, someones father. I could easily be you.

    My life since having CFS has been on hold. I'm 31 but in reality my life ended when I was 27. Unless I get better, then you might as well write on my tombstone that I died in 2008, even if you bury me in thirty years time.

    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.
    I disagree; it's worse, I'd rather take my chances with cancer, and cancer is horrid. At least I would be given treatment and have a chance to live, however slim. With CFS right now, I dont get even that.

    I have seen and read of patients doing well on Ampligen, and that's signficant because people try all sorts of things but rarely have improvement. Ampligen works. Give this community hope by approving it. Please give me a chance to have some normality of life. I'd hope to get a lot of my life back, but my dream is to join my wife in taking my daughter to the park - if that was all I got out of it it would be worth it.

    Thank you,

    I just got an email thanking me for providing a statement. It wasnt an automated reply, so it's nice to know that they read it. We've done our best. Does anyone know when we will know?
  7. Sasha

    Sasha Fine, thank you

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    Brilliant letter, snowathlete - really powerful.

    All these great letters put mine to shame - good job numbers count as well as quality! :)

    I don't know when we'll hear, either. Does anyone know?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Ironic that we support each other by "liking" each other's very sad stories--but that is how the software works!

    Yes, nice to see that they are acknowledging our emails. I don't think that a tally of the number of cc's that Robert receives will reflect the number of letters sent. Not everyone will have cc'd him.

    Sushi

    P.S.
    Sasha Do you know the cut off time--say in Eastern Standand time?
  9. Sasha

    Sasha Fine, thank you

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    Sorry, Sushi - I only know what's in Bob Miller's article.
  10. Sasha

    Sasha Fine, thank you

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    Yes, the irony of that hit me too!
  11. HTree

    HTree

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    Hi Cort, All,
    I did a big push for the Aviva contest and unfortunately didn't have energy left for this. Is the 6th the hard deadline? Should I submit today (the 7th)? (is there an FDA URL I can look at for details about this?)
    Thanks for your hard work everyone!
    Peace
    Htree
    p.s. also, do we know if these comments are public/posted publicly like the last FDA comments? Thanks.
  12. Sasha

    Sasha Fine, thank you

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    Hi HTree - no idea if it's a hard deadline but it takes 5 minutes, literally, to send an email using Bob's template so you might as well do it! :)

    I don't have any info about this other than what's in Bob's email.
  13. HTree

    HTree

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    A little late, but done! I hope accepted. Fingers crossed.
    Sasha likes this.
  14. urbantravels

    urbantravels disjecta membra

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    You know, I'd go ahead and do if if you're still moved to do so - I think there is still potential for it to "count" and get read.

    Here's what I wrote, sent just before the deadline on the 5th. I think it DOES sound melodramatic despite what I said in the letter. Well, it wouldn't be me if it wasn't at least somewhat pompous:p


  15. Sasha

    Sasha Fine, thank you

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    Great letter, urban.
  16. LaurelW

    LaurelW Senior Member

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    Well done, Urban!:D

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