ProHealth me-cfs Vitamin and Natural Supplement Store and Health
Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help

|
|

Trending News

10 Celebrities with ME/CFS

The Brain Boosting and Fatigue Fighting B-12

Severe ME/CFS - New Clinical Study

A New International Newsletter on ME/CFS Is Launched

Norwegian ‘Woulds’ (and ‘Wouldn’ts’): The ME/CFS Survey

Clinical Trial Now Recruiting for New ME/CFS Treatment

Altered immune response to exercise in patients with chronic fatigue syndrome/myalgic encephalomyeli...

Altered Distribution of Lymphocyte Populations in Chronic Fatigue Syndrome Patients

VIDEO: Julia Newton Talks About Neurocognitive problems in ME/CFS

Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephal...

 
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!




Discuss This Article Post a Comment 




[ Be the first to comment on this article ]




 
Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Our FREE
Newsletter
Subscribe Now!
Receive up-to-date ME/CFS & Fibromyalgia treatment and research news
 Privacy Guaranteed  |  View Archives

Save on Your Next Order

Featured Products

Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
MitoQ® MitoQ®
Powerful Antioxidant Support to Mitochondria
B-12 Extreme™ B-12 Extreme™
The Most Potent Vitamin B-12 on Earth
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%

Natural Remedies

The Big Blue Fish that Helps Chase the Blues Away The Big Blue Fish that Helps Chase the Blues Away
IBS, Crohn’s Disease, Colitis, and Other Digestive Disorders IBS, Crohn’s Disease, Colitis, and Other Digestive Disorders
The Most Powerful Natural Antioxidant Discovered to Date - Hydroxytyrosol The Most Powerful Natural Antioxidant Discovered to Date - Hydroxytyrosol
Running on Empty? Fuel Up with NADH Running on Empty? Fuel Up with NADH
Three-Step Strategy to Reverse Mitochondrial Aging Three-Step Strategy to Reverse Mitochondrial Aging

FIBROMYALGIA RESOURCES
What is Fibromyalgia?
Fibromyalgia 101
Fibromyalgia Symptoms
Fibromyalgia Treatments
| CFS RESOURCES
What is CFS?
ME/CFS 101
ME/CFS Symptoms
ME/CFS Treatments
| FORUMS
Fibromyalgia
ME/CFS
ADVANCED MEDICAL LABS
WHOLESALE  |  AFFILIATES
GUARANTEE
CONTACT US
PRIVACY
RSS
SITE MAP
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing