My Oral Testimony at the AAC Meeting Regarding Ampligen on December 20, 2012

My name is Jeannette.

I am very pleased to have this opportunity to address you and want to express my sincere thanks for your consideration of this critically important decision.

I have suffered with CFS for almost 7 years and was very fortunate to become a patient of Dr. Dan Peterson in Incline Village, Nevada and to begin Ampligen therapy 8 months ago.

Before I was stricken with this illness, I was a highly functioning international business attorney with a prominent international law firm working long hours and getting close to partnership.

That came to a screeching halt in 2006 when I became ill and unable function in my job and had to go out on disability.  Since then, I have incessantly endeavored to find treatments that would allow me to lead a somewhat normal life and to enjoy my family with my husband, Ed, and my 2-year-old daughter, Aimee with whom I lived in California—just one mile form Stanford University—all to no avail.

As a result, Ed and I decided that Ampligen was the only realistic hope we had. As you can imagine, this was an agonizing decision, as it necessitates—due to the lack of FDA approval—my living in Incline Village, 235 miles away from Ed and Aimee, except for weekend visits every few weeks.

Despite this heart-wrenching separation, I feel we have made the right decision, as I have recovered a significant part of my lost functioning to the point of more frequently being able to enjoy my time with my family.  Equally important, I can finally entertain hope for continued improvement rather than experience a steady deterioration of my condition. Ampligen has started to give Aimee her mother and Ed his wife back.

Despite the need to receive an infusion twice a week, I actually look forward to infusion days because I can feel the benefit of the drug. I implore you to consider my experience and that of many others who have benefitted tremendously from this drug and to give everybody in this long-suffering patient community hope for the future—for the first time.

There are no other drugs for CFS in the pipeline. If Ampligen doesn’t get approved, we are looking at years, maybe decades, of continued unspeakable suffering without any relief and without any hope. Not approving Ampligen would be devastating to hundreds of thousands of patients and their families.

Thank you!

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4 Responses to My Oral Testimony at the AAC Meeting Regarding Ampligen on December 20, 2012

  1. Diane Lewis says:

    Jeannette, You have a very sacrificial testimony that should have been better respected. I admire that you work hard to find the ways to be able to spend time with your family as well as possible. Perhaps tomorrow, we will not be invisible because your courage required several of those on the panel to face the reality of what if it was them, and they have been too deep in denial to really know what this is like. Rest, Restore, and Repeat! They are going to know what it like and wish they had taken this opportunity.

  2. Anonymous says:

    Jeanette, very good remarks, which you were courageous to make. So much suffering for so many years, and a person is given such a small amount of space in which to convey such an urgent message. Very well done. At the very least your appeal and your explanation about how your life has changed, separating you from your family and career, must have penetrated even the most inflexible minds and stirred up some thinking about the seriousness of this disease.
    I hope that you continue to improve on Ampligen, and that you can soon live with your family.
    This really is a battle, to have CFS/ME recognized for the horrible illness that it is and its devastating impact on sufferers and their loved ones. You have made an impact. That cannot be undone. It’s another step forward.

  3. Anonymous says:

    The above message was from Kathy D., and somehow I’m anonymous.

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