ProHealth health 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

Artificial sweeteners linked to risk of weight gain, heart disease and other health issues

All About Ginkgo Biloba: Benefits of This Timeless Herbal Supplement

Yarrow Oil: Here's Why It Deserves a Place in Your First-Aid Kit

Vitamin D supplement use associated with lower risk of breast cancer

Carnitine deficiency suggested as contributor to autism

Lutein — An Important Nutrient for Eye and Brain Health

White Camphor Oil: The Purest Camphor Oil

Taurine: Facts About This Crucial Amino Acid

Lutein, found in leafy greens, may counter cognitive aging

Vitamin D3 Versus D2

 
Print Page
Email Article

FDA Now Accepting Video Testimonies From CFS/ME Patients

  [ 8 votes ]   [ Discuss This Article ]
www.ProHealth.com • April 25, 2013


On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a public workshop in Bethesda, MD to discuss the development of safe and effective drug therapies for CFS and ME. The panel will hear presentations and comments from CFS/ME physicians, researchers, and patients. Jennie Spotila, founder of Occupy CFS, and Robert Miller, a long-time patient advocate for Ampligen, will both be attending. 

Given the fact that so many patients with CFS/ME are too ill to travel, the comment docket will be just as important as live testimony. The information submitted through comments will also help inform FDA's internal review processes. For example, if they hear from patients that VO2max exercise testing is the best way to measure activity intolerance, they are more likely to consider such testing as a good progress measurement in a clinical trial. If they hear that cognitive problems are our biggest difficulty, they may be more likely to focus on that as a good endpoint in a clinical trial. So, the docket – whether written or video comments – will be an essential part of their preparation of their report. FDA is keeping the docket open until August 2nd to allow people to comment on issues that either arise in the meeting or were not covered on April 25th and 26th.

Video testimony is especially important because without it, the FDA will not have the opportunity to see the sickest patients. It's very powerful to see a pediatric patient confined to bed, or a patient who cannot sit up because of orthostatic intolerance. Those patients need to have a chance to be seen by FDA, and to make their voices heard. The only way to do that is video.

FDA will accept video comment through the docket in the form of links to YouTube videos. The docket will remain open until August 2nd, and FDA is asking people to file comments answering the questions posed in the meeting notice.  You can submit written comment (2,000 character limit), attach a Word or PDF document, or include a link to a YouTube video.

It is not difficult to upload a video onto YouTube. Click HERE to watch a short, informative video of instructions. Written comments can be submitted HERE.

This is a great opportunity for patients to speak directly to FDA and to influence federal funding for research on treatments! Let's make our voices heard!




Post a Comment

Featured Products From the ProHealth Store
Vitamin D3 Extreme™ Energy NADH™ 12.5mg Optimized Curcumin Longvida®


Article Comments



Be the first to comment on this article!

Post a Comment


 
NAD+ Ignite with Niagen

Featured Products

Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%

Natural Remedies

Physically and Mentally Exhausted? How to Restore Energy at Its Source Physically and Mentally Exhausted? How to Restore Energy at Its Source
Anti-Inflammatory Properties of Tart Cherry Anti-Inflammatory Properties of Tart Cherry
The Guaifenesin Story: A centuries-old bark extract used for clearing the airways – now key to a popular FM symptom-reversal protocol The Guaifenesin Story: A centuries-old bark extract used for clearing the airways – now key to a popular FM symptom-reversal protocol
Astaxanthin - A Little-Known but Power-Packed Nutrient Astaxanthin - A Little-Known but Power-Packed Nutrient
Rejuvenating the Brain - How PQQ Helps Power Up Mental Processing Rejuvenating the Brain - How PQQ Helps Power Up Mental Processing

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