ProHealth fibromyalgia 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

Study Suggests “Bad Energy” is Core Problem in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)

Travel Tips for the Chronically Ill

The Frequency of Primary Sjogren's Syndrome and Fibromyalgia in Irritable Bowel Syndrome.

Fibromyalgia - Orthostatic Intolerance (NMH & POTS) Made Easy

How I floated my fibromyalgia pain away

A Brief Review of the Pharmacology of Amitriptyline and Clinical Outcomes in Treating Fibromyalgia.

Fibromyalgia and Skin Problems: Clothing that Causes Itching

The interfaces between vitamin D, sleep and pain.

Chronic Illness: Doctor Comments – Good Bad or Ugly?

Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia

 
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




Post a Comment

Featured Products From the ProHealth Store
B-12 Extreme™ Hydroxocobalamin Extreme™ Optimized Curcumin Longvida®

Looking for Vitamins, Herbs and Supplements?
Search the ProHealth Store for Hundreds of Natural Health Products


Article Comments



Be the first to comment on this article!

Post a Comment


 
NAD+ Ignite with Niagen

Featured Products

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
B-12 Extreme™ B-12 Extreme™
The Most Potent Vitamin B-12 on Earth
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Fibro Freedom™ Fibro Freedom™
Soothes, Strengthens & Revitalizes

Natural Remedies

Top 3 Nutrients to Detox the Liver and Soothe Digestion Top 3 Nutrients to Detox the Liver and Soothe Digestion
Cocoa's Polyphenol Riches - All the Health Benefits without the Sugar, Calories or Guilt Cocoa's Polyphenol Riches - All the Health Benefits without the Sugar, Calories or Guilt
Thyroid Health and Fibromyalgia Thyroid Health and Fibromyalgia
Block Acid Reflux to Prevent Esophageal Problems! Block Acid Reflux to Prevent Esophageal Problems!
Cell-Charging Compound Gives Steady Energy to Fibromyalgia & Chronic Fatigue Patients Cell-Charging Compound Gives Steady Energy to Fibromyalgia & Chronic Fatigue Patients

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