ProHealth me-cfs Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

Not Just an "Ill Person" - Ways to expand your identity when you're chronically ill

Is Poor Sleep Pummeling the Immune System in ME/CFS and Fibromyalgia? A Vicious Circle Examined

Staying Connected with Friends While Ill

Glial Cell Inhibitors: The Next Sleep Drugs for Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?

Taking a Moment

VIDEO: Illness and Isolation

Inflammation correlates with symptoms in chronic fatigue syndrome

Call Out the Imbalance in Current Policy Making for Pain Management and Prescription Opioid Use

The Secret to Chronic Happiness as You Age

Molecular Underpinnings of ME/CFS Explored at the Open Medicine Foundation Symposium

 
Print Page
Email Article

Jennie Spotila Appointed as FDA Patient Representative

  [ 1 vote ]   [ Discuss This Article ]
By Jennie Spotila • www.ProHealth.com • May 8, 2013


SOURCE: Occupy CFS

Editor's Comment: Jennie Spotila, long-time CFS/ME patient advocate, former board member and chair of the CFIDS Association of America, and founder of Occupy CFS, has just been appointed to the FDA’s Patient Representative Program. Jennie personally attended the FDA’s recent workshop, where she contributed vital information about establishing viable parameters for measuring treatment outcomes. You can watch her presentation HERE.

By Jennie Spotila

As of today, I have been appointed to the FDA’s Patient Representative Program. This has actually been in the works for a while, and I’ve been anxious to tell you about it, but it finally becomes official today.

The FDA Patient Representative Program selects and trains patients (or family members) to serve on advisory committees and to provide FDA with the perspectives of people affected by serious diseases. I learned of the program last October while researching information about FDA. I submitted an application on October 23, 2012, and received provisional training in December. But the conflicts of interest screening process takes months to complete, and I was not notified until March that I was officially accepted. My appointment begins today, May 6th, and will run for five years.

What does this mean? First, I am now eligible to serve on advisory committees convened by FDA to evaluate drugs or biologics for the treatment of ME/CFS. You may recall that Alaine Perry served as the patient representative on the advisory committee that reviewed the Ampligen application in December 2012. Second, FDA offers ongoing training to its patient representatives so I will have the opportunity to learn more about various issues (like risk mitigation programs, etc.), and to share the perspectives of ME/CFS patients with FDA and my fellow representatives. I have already learned a great deal about FDA through this program and I look forward to learning more.

Federal ethics rules for service on advisory committees are very strict. I would be disqualified from service by even the undue appearance of a conflict of interest. I won’t be able to comment on products that may come up for review, or accept compensation from companies that make those products (of course, no one has ever offered me such compensation!).

My sincere hope is that there will be multiple opportunities in the next five years for me to serve on committees evaluating treatments for ME/CFS! In the meantime, I will pass on what I learn through this program. I also hope that you will help me educate FDA about ME/CFS by sharing your perspectives and questions with me, so that I can share those views with them.

You can help me educate FDA and other patient reps about ME/CFS by sharing your thoughts with me on treatments, burden of illness, and other issues as they arise. Also let me know if you have questions about FDA and I'll try to get answers for you.

You can contact Jennie at Occupy CFS




Post a Comment

Featured Products From the ProHealth Store
Hydroxocobalamin Extreme™ Mitochondria Ignite™ with NT Factor® Energy NADH™ 12.5mg


Article Comments



Be the first to comment on this article!

Post a Comment


 
Optimized Curcumin Longvida with Omega-3

Featured Products

Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
B-12 Extreme™ B-12 Extreme™
The Most Potent Vitamin B-12 on Earth
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Hydroxocobalamin Extreme™ Hydroxocobalamin Extreme™
The B-12 Your Brain Needs for Detox & Sharpness

Natural Remedies

The Surprising Benefits of Probiotics - What You Didn't Know The Surprising Benefits of Probiotics - What You Didn't Know
Curcumin - a Golden Gift of Nature with Benefits Still Untold Curcumin - a Golden Gift of Nature with Benefits Still Untold
Fatigue & Fibro Fog: Could You Have a B-12 Deficiency? Fatigue & Fibro Fog: Could You Have a B-12 Deficiency?
Coping When Colds or Flu Catch Up with You Coping When Colds or Flu Catch Up with You
Aches and Pains? A Simple Solution You'll Love Aches and Pains? A Simple Solution You'll Love

CONTACT US
ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
SHOP WITH CONFIDENCE
Credit Card Processing
SUBSCRIBE TO OUR NEWSLETTERS
Get the latest news about Fibromyalgia, M.E/Chronic Fatigue Syndrome, Lyme Disease and Natural Wellness

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2017 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map