Activate Now
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
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

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

How One LLND Treats Lyme disease and Co-infections Using Natural Medicine

New depression diagnosis and treatment

Surprising Benefits of Cinnamon

Specific vitamin D levels linked to heart problems

A Sleep Intervention For Children With Autism: A Pilot Study

Higher vitamin D levels may be protective against acute rhinosinusitis

Saffron reduces oxidative stress in metabolic syndrome patients

Pilot Study: Measuring Relaxation Response to the iLs Dreampad

Researchers are on their way to predicting what side effects you'll experience from a drug

Print Page
Email Article

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

  [ Not Yet Rated ]   [ Discuss This Article ]
By Lori Chapo Kroger • • 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.


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):

---  ---



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


Post a Comment

Featured Products From the ProHealth Store
Ultra EPA  - Fish Oil Energy NADH™ 12.5mg Ultra ATP+, Double Strength

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

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

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

Featured Products

Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health

Natural Remedies

Repair Damaged Mitochondria and Reduce Fatigue Up to 45% Repair Damaged Mitochondria and Reduce Fatigue Up to 45%
Nutrients to Combat the Modern Stress Epidemic Nutrients to Combat the Modern Stress Epidemic
Itching to Find Dry Skin Relief? Itching to Find Dry Skin Relief?
The Brain Boosting and Fatigue Fighting B-12 The Brain Boosting and Fatigue Fighting B-12
Vitamin K-2 – A Key Player in Cardiovascular and Bone Health Vitamin K-2 – A Key Player in Cardiovascular and Bone Health

What is Fibromyalgia?
Fibromyalgia Diagnosis
Fibromyalgia Symptoms
Fibromyalgia Causes
Fibromyalgia Treatments
Fibromyalgia Diet
Fibromyalgia Medications
M.E. & CFS
What is M.E./CFS?
M.E./CFS Diagnosis
M.E./CFS Symptoms
M.E./CFS Causes
M.E./CFS Treatments
M.E./CFS Diet
M.E./CFS Medications
What is Lyme Disease?
Lyme Disease Diagnosis
Lyme Disease Symptoms
Lyme Disease Causes
Lyme Disease Treatments
Lyme Disease Diet
Lyme Disease Medications
M.E. & CFS
Lyme Disease
General Health
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing