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

|
|
|
|

Trending News

New Option For Chronic Fatigue Syndrome

The Most Powerful Natural Antioxidant Discovered to Date - Hydroxytyrosol

Stop Bacteria With Nature's Antibiotics

Vitamin D Deficiency Linked to Neurological Diseases; Also Raises Risk of Asthma Attacks, and More

New Test Shows Promise in Identifying New Drugs to Treat Lyme Disease

Coenzyme Q10 Helps Veterans Battle Gulf War Illness Symptoms

Strengthen Cell Function with Energy-Boosting Niagen

Dietary Flavanols Reverse Age-Related Memory Decline

Vitamin D deficiency increases poor brain function after cardiac arrest by sevenfold

Study: Doubling saturated fat in the diet does not increase saturated fat in blood

 
Print Page
Email Article

ME/CFS Patients Call To Action: Advocates Call For FDA To Hold ‘REAL’ FDA Stakeholder’s Meeting

  [ 36 votes ]   [ Discuss This Article ]
By Bob Miller • www.ProHealth.com • June 30, 2013


Reprinted with kind permission from Health Rising.

Editor’s Note: You can read a summary of Day One of the FDA meeting HERE. You can read summaries of the Day Two morning sessions HERE, and Day Two afternoon sessions HERE.

By Bob Miller

We, the “FDA Team*,” are asking you to send the message below to the FDA and to listed members of Congress.

The recent patient-focused drug development meeting held by the FDA was a start – but only a start. The FDA stated that their goal was to support treatments for the chronically ill, particularly where there is a drug deficit, yet the meeting fell short of meeting that goal.

The original goal of the FDA Stakeholders was to provide a clear regulatory pathway that would support faster drug development for ME/CFS. That obviously did not happen. 

Now Bob Miller and others on our team are continuing communication at the top level, including with Dr. Janet Woodcock, Director of the Center for Drug Development and Research at the FDA. We have informed her that your messages will be sent to one of her staff members, David Banks PhD, of Special Health Issues.

We want them to hear from you, family and friends. This keeps critical channels of communication open.

NUMBERS COUNT!

AIDS patients demanded one thing: Treatment. And they got it! We must demand the same.

Please email the following to David Banks and myself, Bob Miller. (I am monitoring how many emails are sent along with other FDA team members.) Also, we ask you to CC others in the Department of Health and Human Services and congressional staff members so they can influence the FDA.

Just copy and paste, please add your name and address or email information at the end. (As always, this is just a suggested template for your convenience):

To: David.Banks@fda.hhs.gov, 511bobmiller42@gmail.com

Cc: howard.koh@hhs.gov, Sara_Mabry@casey.senate.gov, Karen_Wade@hagan.senate.gov, Eamonn_Hart@blumenthal.senate.gov, Carolyn_gluck@reid.senate.gov

monica.volante@mail.house.gov, robb.walton@mail.house.gov, rebekah.armstrong@mail.house.gov, eric.fox@mail.house.gov, christopher.Stewart@mail.house.gov, ryan.mcBride@mail.house.gov

 

Subject: ME/CFS Treatments

Dear Dr. Woodcock:

Over 1 million Americans and their families continue to suffer with ME/CFS. Patients have no treatment options as there are no FDA-approved treatments. One drug has been stuck in the pipeline for two decades (Ampligen), and there are no others likely to be reviewed for years to come. The recent patient-focused drug development meeting fell short of meeting the needs of ME/CFS patients. By the end of this year, FDA must convene a follow-up meeting to engage pharmaceutical and biotech companies to assist the FDA in establishing a regulatory pathway for drug approval.

The stakeholder meeting held on April 25th and 26th opened the FDA’s eyes to the severity of our condition and the enormous Unmet Medical Need. FDA has the power and the authority to waive traditional regulations when healthcare demands, particularly when the disease is serious/life-threatening, as ME/CFS clearly is. We need access to treatments NOW. Please act now for us! Don’t stop the progress; let’s keep it going. We cannot wait another decade for relief. People are suffering and dying.

Thank you,

“Place Your Name Here”:

“Place Address and/or Email Here”

- – - End of your email message – - -

*The FDA Team includes:

Cort Johnson, patient and principal of Health Rising

Robert Miller, ME/CFS patient /activist and (Courtney Miller, patient wife FDA Team support)

Lori Chapo Kroger, patient and president of PANDORA Org.

Pat LaRosa, patient / patient advocate

Billie Moore, parent of patient lost to ME/CFS & patient advocate



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

Black Friday Sale

Featured Products

FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Optimized Curcumin Longvida® by ProHealth Optimized Curcumin Longvida® by ProHealth
Supports Cognition, Memory & Overall Health
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium

Natural Remedies

The Curcumin Revolution: The Curcumin Revolution: "Golden" Ticket to Better Health
Itching to Find Dry Skin Relief? Itching to Find Dry Skin Relief?
Green Coffee Extract: Unique Obesity Intervention Green Coffee Extract: Unique Obesity Intervention
VIDEO: Healthy Eating and Fibromyalgia VIDEO: Healthy Eating and Fibromyalgia
Protect Against Sun-Induced Skin Aging From The Inside Out Protect Against Sun-Induced Skin Aging From The Inside Out

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