Saturday, December 15, 2012

Ampligen Meeting 12/20/12 in Maryland

Subject: [CFSupport] Ampligen Meeting in Silver Spring 12/20/12
To: "NOVA CFS/ME, FMS, OI & Gratitude Support Groups" <cfsupport@yahoogroups.com>

Here are two notes we are passing through our list about a DC area event next week pertaining to CFS treatment. At this time, we do not know of anyone in our group who is planning to or able to attend. If interested, please write to the senders Robert Miller or Mary Dimmock for further information or to let them know of your support. Robert can also be reached through his FB page. He has posted to our FB wall so you can find the link to his page at

-Elly


1)

Dear CFS-NOVA,
I am Robert Miller a long time ME/CFS and FM patient & advocate. Next Thursday Dec. 20th, at FDA White Oak campus in Silver Spring, MD, History will be made. A medication will be reviewed by an expert panel for the treatment of ME/CFS. We would like to have as many patients attend as possible. No registration is necessary. I have listed the details below with a link to the FDA website that has the announcement. I would ask that you post on your website or contact your patient community with this invitation.
You can use my contact email 511bobmiller42@gmail.com for anyone who has questions. We have patients coming from across the U.S. to give public testimony. Your support would be greatly appreciated. I have hundreds of patient testimonies to present. If you have patients and/or family who would like to send in their testimony, they can email it to me at the above email address and I will present it with my testimony. I will also post a template email below so patients and/or family can use it as a guide.
Thank you,
Robert Miller
URGENT: December 20, 2012: Arthritis Advisory Committee Meeting Announcement

FDA Agenda

The Advisory committee will discuss new drug application (NDA) 22151, rintatolimod injection (proposed trade name AMPLIGEN) submitted by Hemispherx Biopharma, Inc. for the treatment of patients with chronic fatigue syndrome.

To All ME/CFS and FM Patients living in the DC, Maryland and Northern Virginia area and beyond. On Thursday, Dec. 20th, from 8:00 a.m. to 5:00 p.m.The FDA Advisory Panel will be Meeting to review a drug (Ampligen) for the treatment of CFS/ME.
This will be the "First" drug ever reviewed by an advisory committee for the treatment of CFS/ME. Your presence at this meeting is invaluable. Patients (some are Ampligen some are not) are flying in from across the U.S. to give testimony at a great cost (not speaking of finance). As patients, you understand how limited and valuable our time is with family, many of these patients are dedicating their Holiday family time to this meeting.
We Need Your Support at this meeting. You "do not" have to register to attend, just bring photo I.D. Come and show the advisory committee and the FDA that we need and deserve treatments. Show them that this disease is serious and life threatening to us all. Your attending will speak Volumes. Ampligen approval will legitimize CFS/ME in the minds of the Medical Community. This potential approval is a Game Changer for all ME/CFS Patients. Please come and be a part of ME/CFS history with your "A C T I O N". Link for location and time below. For those with limited ability to attend, you can come at Noon, prior to Public comment and stay as long as you can. The committee will vote at the end of the meeting at 5:00 pm

Info FDA Website: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm
Send To: Email address: 511bobmiller42@gmail.com
Subject line: Ampligen-Treatment for Chronic Fatigue Syndrome CFS/ME

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_.
After 3 decades, We Need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS, Chemo for Cancer, Tysarbri for MS or Benlysta for Lupus. We are not second class patients. Reality of CFS, it is Serious and Life Threatening. According to CDC studies, CFS is comparable to MS, AIDS, Lupus, Rheumatoid Arthritis, Heart Disease, Renal Failure, COPD and Chemotherapy. CFS/ME effects every moment of my life. We've seen and heard of patients responding to Ampligen. Give patients Hope by approving Ampligen. We want our lives back.
Thank you,
Full Name
Address Here
Thank you all,
Robert Miller ME/CFS-FM patient/advocate

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2)

Hi

My name is Mary Dimmock and I am part of a group that is trying to insure that we have adequate patient representation at the FDA advisory meeting to consider Ampligen. The meeting is on Dec 20 and is in Silver Spring, Maryland.

Given that some of your members may not be far from that facility, we wanted to check and see if you know of any patients that will be there and if you havent already, if you would be able to provide information to them. If you haven't already but are willing to send out information, the following may be useful.

Thank you in advance. I appreciate it
Mary
  • What: Ampligen is being presented in front of the Arthritis Advisory Committee which is a result of consolidating the review of all drugs for ME/CFS under one division, the division of Division of Pulmonary, Allergy and Rheumatology Products. Additional information can be found here: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm
  • When: Dec 20, 2012 from 8:00 am to 5:00 pm
  • Where: FDA White Oak Campus, Building 31, Great Room (Rm. 1503), White Oak Conference Center, 10903 New Hampshire Avenue Silver, Spring, Maryland
  • Getting there: The Metro 'Red Line' goes to Silver Springs. From there, you need to take a bus or a 20 minute taxi to the FDA campus. There is also a bus that operates in the morning til about 9:00 but you will need to walk up a hill to get to it. Further details can be found here
Mary Dimmock < maryedimmock@yahoo.com >

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