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

The Cannabis Science Fibromyalgia Pain Patch: Fact or Fiction?

Brain Fog

Top 10 Benefits of Laughter for Fibromyalgia

Increased risk of a suicide event in patients with primary fibromyalgia and in fibromyalgia patients...

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

Chronic Christmas: Surviving the Holidays with a Chronic Illness

The Difference Between Fibromyalgia Tender Points and Myofascial Trigger Points

Are persons with fibromyalgia or other musculoskeletal pain more likely to report hearing loss? A HU...

Medical cannabis - the Canadian perspective.

Productivity Values That Get in the Way of Our Health

 
Print Page
Email Article

The Pressure on FDA Is Building: Patient Call to Action!

  [ Not Yet Rated ]   [ Discuss This Article ]
By Lori Chapo Kroger • www.ProHealth.com • August 20, 2013


Editor's Note: Below is a message from PANDORA, a nonprofit patient advocacy group for people with neuro-endocrine-immune illnessses. It takes less than a minute to send the email. 

Attention ME/CFS patient community,

The email campaign to the FDA is continuing. We are asking them to fulfill the promises and purpose of their April ME/CFS Drug Development workshop.

Now is not the time to give up!

Patient advocates have been visiting Washington legislators in the last few weeks. This is going to add even more pressure. But, they need to know patients care about this issue. Medical professionals are  telling us that when one drug is approved for this disease, other companies will take an interest.

PANDORA Org and the rest of the "FDA Team" are asking you to send a new message  to the FDA and to listed members of Congress. We want them to hear from you, your family and your friends.

Remember, NUMBERS COUNT! 

Please email the following to David Banks, who monitors the emails for Dr. Janet Woodcock, and PANDORA Org. (We are also monitoring how many emails are sent.) Additionally, please Cc others in the Department of Health and Human Services and congressional staff members so they can influence the FDA.

Just copy and paste the following, filling in 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, info@pandoraorg.net

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 Drs. Hamburg and Woodcock:

ME/CFS patients continue to suffer day after day, year after year. You can change that by working directly with the pharmaceutical industry. Give us the opportunity to have some quality of life.

You have often said you are committed to those suffering from chronic diseases, acknowledging the burden to our nation's families, healthcare system and economy. The way the FDA has dealt with diseases like Alzheimer's and obesity demonstrates you can and are willing to create a special pathway to drug development for chronic diseases with high morbidity.

No drug is without risk. No drug works on every patient. But physicians and ME/CFS patients have no options. When there are NO drugs approved for a disease, there is NO innovation by pharma and NO hope for those suffering.

As physicians, you understand the risk vs. benefit, especially for diseases that create high morbidity. As leaders, you have the ability to change the lives of those suffering with ME/CFS. Over 700 patients provided testimony to the advisory committee supporting Ampligen, and more than 4,000 patients asked you to approve the drug. The top two potential drugs, Ampligen and Rituxmab, did not make the agenda at the Patient Focused Drug Development Workshop. Key words here: DRUG DEVELOPMENT. Their manufacturers were not even invited to the FDA's Drug Development meeting.

We know these drugs and others have the potential to help some patients with ME/CFS. We understand greater than anyone the risks and benefits of living with ME/CFS. Bring pharma - all those companies that have drugs that are now being used off label for ME/CFS patients - to the table! Without such a meeting, those in charge of overseeing drug development for ME/CFS are simply spouting empty words of "support."

Thank you,

"Place Your Name Here"

"Place Address and/or Email Here"

 

- - - end of email message - - -

The FDA Team includes:

Lori Chapo Kroger, patient and president of PANDORA Org

Robert Miller, patient and patient activist

Courtney Miller, ME/CFS patient caregiver/advocate

Pat LaRosa, RN, MSN, patient and NJCFSA president

Billie Moore, parent of patient lost to ME/CFS & NJCFSA advocacy chair

Cort Johnson, patient and principal of Health Rising  

 

Lori Chapo-Kroger, President

PANDORA Org, Inc.

http://pandoraorg.net/




Post a Comment

Featured Products From the ProHealth Store
Energy NADH™ 12.5mg Guaifenesin FA™ Fibro Freedom™


Article Comments



Be the first to comment on this article!

Post a Comment


 
Natural Pain Relief Supplements

Featured Products

Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
B-12 Extreme™ B-12 Extreme™
The Most Potent Vitamin B-12 on Earth
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Hydroxocobalamin Extreme™ Hydroxocobalamin Extreme™
The B-12 Your Brain Needs for Detox & Sharpness
Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health

Natural Remedies

When a Good Night's Sleep Is Just a Daydream... When a Good Night's Sleep Is Just a Daydream...
Can Glycine + Amino Acids Be the Secret to Deep, Rejuvenating Sleep? Can Glycine + Amino Acids Be the Secret to Deep, Rejuvenating Sleep?
Fatigue & Fibro Fog: Could You Have a B-12 Deficiency? Fatigue & Fibro Fog: Could You Have a B-12 Deficiency?
Fight Inflammation and Promote Cognitive Health with High-OPC Grape Seed Fight Inflammation and Promote Cognitive Health with High-OPC Grape Seed
Coconut Oil - Healthy Gifts from the 'Tree of Life' Coconut Oil - Healthy Gifts from the 'Tree of Life'

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

© 2016 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map