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

10 Fibro-Friendly Foods with a Bonus: Beautiful Skin

Fight Back! Win the War Being Waged Against Your Immune System

Studies Show that Magnesium L-threonate Improves Brain Plasticity, Leading to Direct and Significant...

The role of microbiota and intestinal permeability in the pathophysiology of autoimmune and neuroimm...

Clary Sage Oil May Be Pricey, but Its Benefits Are Priceless

Component of red wine, grapes can help to reduce inflammation, study finds

Poly MVA: A Novel Therapy for Increasing Energy, Repairing DNA, and Promoting Overall Health

Acupressure reduced fatigue in breast cancer survivors

Pumpkin Pie Turmeric Breakfast Smoothie - Vegan + Gluten-Free

Omega-3 fatty acid stops known trigger of lupus

Print Page
Email Article

'Tell CDC to Change ME/CFS Research' Campaign Wins Round One!

  [ 16 votes ]   [ 1 Comment ] • February 16, 2011

In December 2010, 11 leading ME/CFS patient advocacy organizations, led by PANDORA founder Marly Silverman, sent a letter to the new chief of the CDC’s Viral Diseases Branch – Dr. Elizabeth Unger – urging implementation of 9 changes in the way the CDC conducts ME/CFS research. The list of suggested changes, which had also been proposed earlier at the April 2010 CDC Stakeholders’ Meeting, and the names of the signatory organizations, are attached below.

Then on Jan 3, 2011, the group announced that they had created an email petition - Tell CDC to Change their ME/CFS Research  - that patients & other advocates could sign, urging key CDC and HHS decision makers to implement the 9 changes.

In just nine days, more than 600 patients had signed the petition, which was then emailed on behalf of each to a list of “Dr. Unger’s bosses” within the CDC, as well as HHS leaders Howard Koh, MD, Assistant Secretary of Health, and Dinah Bembo, Assistant to the Assistant Secretary of Health.

CDC Agrees to Meeting. On Feb 13, PANDORA Communications Director Tina Tidmore announced to participants that the petition would be discontinued “because we have received a commitment to one of the goals.”

According to the announcement:

“Dr. Elizabeth Unger with the CDC [has] contacted PANDORA asking for a meeting to discuss how to develop future dialogue with patient organizations. She said she wants to establish venues to restore trust and will discuss the 9 action points listed in the letter and petition.

“She also agreed to a phone conference including representatives from other patient organizations that joined in this effort. This is expected to be in March, but we do not yet know exactly when.

“Thank you for participating. This is a first step.”

Asked about next steps for organized advocacy, Tina responds:

“In the history of government activism, there is an action of pressure. Then if the target comes to the table, the activists hold off until it is seen what comes out of the meeting. Although PANDORA is taking down the petition for now [at 640 signatures], depending on what happens at that meeting, further and possibly stronger action may be forthcoming.
“Dr. Elizabeth Unger has up until now not had the power to make changes, as she was not directing the ME/CFS program. But in her new position, she now does. This is an opportunity for a change in CDC research. We don't know what the ME/CFS research under her leadership will look like. But it is a good sign that she is willing to listen to patient organizations.
‘Different than many patient organizations, PANDORA ( empowers patients to participate in organized advocacy efforts and keeps patients informed of advocacy opportunities through their facebook page and newsletter.”

In summary, this series of events is just more proof that strong activism is working for the ME/CFS community, and with this assurance, we suspect it will never be the same.

* * * *


1. Accept the invitation from patient organizations to an open dialogue through quarterly meetings, where they can inform you of how CDC policies affect patients and their quality of life, and where you can educate the patient community on the reasons for decisions made by the CDC in relation to this disease. PANDORA’s 2009 response to the CDC’s request for input to the 5-year Strategic Plan, as shown on their website, is a good starting point for discussions.

2. Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.

3. Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. The CDC should use the increasingly more popular and scientifically well-received Canadian Case Definition for its current and planned 5-year strategy.

4. For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow. AIDS is a great example of this. In-hospital studies are best conducted in facilities trained and dedicated to the treatment of ME/CFS patients.

5. Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers. This is the principle behind the NeuroEndocrineImmune Center promoted by PANDORA and recommended by the New Jersey Legislature.

6. Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, “chronic fatigue syndrome,” rests with the CDC because that is where the current name originated. Invite input from patient organizations, leading ME/CFS researchers, and recognized ME/CFS clinicians in choosing a new name that reflects the pathology and not just one symptom.

7. Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness. Provide current evidence-based information on diagnosis and management of ME/CFS to health care providers, persons with ME/CFS, caregivers, and evaluate associated outcomes.

8. Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.

9. Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.

Signatories: PANDORA, Vermont CFIDS Association, CFS Knowledge Center, Rocky Mountain CFS/ME & FM Association, Mass CFIDS/ME & FM Association, Mothers Against Myalgic Encephalomyelitis, CFS/FMS Organization of Georgia, CFS Solutions of West Michigan, Wisconsin ME/CFS Association, Inc., Medical Professionals with ME, Connecticut CFIDS & FM Association, and a group of leading individual patient advocates.

Post a Comment

Featured Products From the ProHealth Store
Vitamin D3 Extreme™ FibroSleep™ Ultra ATP+, Double Strength

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

Article Comments Post a Comment

Faith, Hope and Encouragment
Posted by: bbrown1
Feb 17, 2011
A special thanks to all who are lending a hand or leading these various groups who are actively involved in the many differing aspects of ME/CFS. I know that many of you, too, suffer with this illness. I also know that many would like to become more involved who cannot physically or mentally afford to do this. At the current time my ME/CFS and FM are in remission and this is the longest I have gone without relapsing. I have to tell you that feeling quite well is a Godsend to me. While I still suffer with discomfort and sleep a good 12 hours nightly, this is the closest I have come to normalcy in 7 years. I would like to do all I can during this "UP" time to be involved in the many efforts to improve our quality of life. With Blessings to all, Brenda Brown Minnesota
Reply Reply
Natural Pain Relief Supplements

Featured Products

Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health
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%
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

How Glutathione Can Save Your Life How Glutathione Can Save Your Life
Physically and Mentally Exhausted? How to Restore Energy at Its Source Physically and Mentally Exhausted? How to Restore Energy at Its Source
Block Acid Reflux to Prevent Esophageal Problems! Block Acid Reflux to Prevent Esophageal Problems!
Relief for Dry, Itchy Skin Caused by Fibromyalgia Relief for Dry, Itchy Skin Caused by Fibromyalgia
Breaking Through the Mental Fog Breaking Through the Mental Fog

ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
Credit Card Processing
Be the first to know about new products, special discounts and the latest health news. *New subscribers only

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