ProHealth health 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

Gut Bacteria, Artificial Sweeteners and Glucose Intolerance

Vitamin E intake critical during 'the first 1,000 days'

Turmeric compound boosts regeneration of brain stem cells

Lower risk of mortality over thirteen year period in association with higher levels of vitamin D

Culprits of Autism Identified: Toxins, Gut Bacteria, Nutritional Deficiencies, and Vaccines Made wit...

Use of Broad-Spectrum Antibiotics Before Age 2 Associated with Obesity Risk

VIDEO: Beautiful Clouds - Relaxation and Meditation

The Fast-Acting Solution for Healthy Digestive Function

Elevated plasma biomarkers of chronic inflammation in Gulf War illness

Higher vitamin E intake linked with lower blood pressure

 
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!



Please 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 Vitamins and Supplements

Featured Products

Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Vitamin D3 Extreme™ by ProHealth Vitamin D3 Extreme™ by ProHealth
50,000 IU Vitamin D3 - Prescription Strength
Optimized Curcumin Longvida® by ProHealth Optimized Curcumin Longvida® by ProHealth
Supports Cognition, Memory & Overall Health
FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%

Natural Remedies

Broad Spectrum Protection Against Brain Aging Broad Spectrum Protection Against Brain Aging
Live Longer: Groundbreaking Research on Omega-3s Live Longer: Groundbreaking Research on Omega-3s
Sunshine Vitamin Has D-lightful Health Benefits Sunshine Vitamin Has D-lightful Health Benefits
The Big Blue Fish that Helps Chase the Blues Away The Big Blue Fish that Helps Chase the Blues Away
Ubiquinol - A More Advanced Form of the Energy Producing Nutrient CoQ-10 Ubiquinol - A More Advanced Form of the Energy Producing Nutrient CoQ-10

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