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ME/CFS Patients: Your email by Dec 6 can convince FDA we need real treatments

  [ 11 votes ]   [ Discuss This Article ]
www.ProHealth.com • November 30, 2012


Note: Midnight Dec 6 was the deadline for patient comments to be considered in the FDA's Dec 20 public review of Ampligen as a treatment for ME/CFS. Now, patients & advocates are invited to view the live webcast of this public review on Dec 20, 8 am to 5 pm Eastern Time. Oral presentations are scheduled for 1:00 pm to 2:30 pm Eastern Time. The FDA indicates it will post details, including the web address for the webcast and background material for the meeting, on Dec 18 at this FDA site: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm. The FDA also plans to archive the webcast for later public viewing.

_____________________

Following is a call to action from a team of ME/CFS patient activists, led by Robert Miller.

URGENT: ME/CFS patient "ACTION" needed by December 6
(A Call To Impact Our (ME/CFS) Nation)

For All ME/CFS Patients, Families and Friends:

On December 20, 2012, ME/CFS patients have the chance to be involved with approving a treatment specifically for CFS/ME. Ampligen patients will testify to an FDA Advisory Committee.

Whether you’ve been on Ampligen or not, or you wish to try it or not - does not matter; the fact is that once one drug gets approved, other drugs will come along and so will research dollars.

Ampligen approval will also legitimize CFS/ME in the minds of the Medical Community. This potential approval is a Game Changer for our Patients, Family & Friends.

Be a part of history with your "A C T I O N". Send in your email by December 6, to let the FDA Advisory Committee know what it’s like to live with ME/CFS daily and that real treatment is needed.

Send To: Email address: AAC@fda.hhs.gov
Subject line: Treatment for Chronic Fatigue Syndrome - Ampligen

To the Advisory Committee Reviewing Ampligen:

(Please Cc: emails to Robert Miller at: 511bobmiller42@gmail.com

SCROLL DOWN for an EMAIL TEMPLATE IF NEEDED

Why is this about Ampligen?
This FDA meeting is part of the process to approve a drug developed by Hemispherx, which has remained committed to the ME/CFS community for more than 2 decades and has invested more than 500 million dollars. Our advocacy community will update you when other significant meetings are coming up, including FDA, CDC and NIH…

Right Now - We Need You to tell the Advisory Committee it’s “your choice” to access Ampligen or not! If denied, it could be years for other treatments to get to this stage. Ampligen is to our community what AZT was for AIDS. It’s just the start of treatments to come. Your Support = Power. (Also note the FDA's Public Ampligen review will be webcast live on Dec 20, 8 am to 5 pm Eastern Time. Details will be posted on Dec 18 at this FDA site: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm)

____________________________

EASY EMAIL TEMPLATE TO COPY & PASTE

(Please Cc: emails to Robert Miller at: 511bobmiller42@gmail.com)

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_.

After 3 decades, we need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS or Chemo for Cancer or Tysarbri for MS or Benlysta for Lupus. We are not second class patients.

The 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 affects 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,
Your full name
Your address




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