A new chief of the Viral Diseases Branch of the Centers for Disease Control and Prevention provides an opportunity for that government agency to change the direction of ME/CFS research. Yet, they need to know what changes are needed. On Dec. 6, PANDORA sent a letter to Dr. Elizabeth Unger who is now heading up ME/CFS research for the CDC. The letter contains solid and strong recommendations that are based in a consensus of patient organizations, experts in the field of ME/CFS and advocates. Also, at the CDC Stakeholder's meeting on April 2009, these same solid and strong recommendations were made.
This letter included the signatures of ten other patient organizations:
The Vermont CFIDS Association, Inc.
CFS Knowledge Center
Rocky Mountain CFS/ME & FM Association
Massachusetts CFIDS/ME & FM Association
Mothers Against Myalgic Encephalomyelitis
CFS/FMS Organization of Georgia, Inc.
CFS Solutions of West Michigan
Wisconsin ME/CFS Association, Inc.
Medical Professionals with ME
The Connecticut CFIDS & FM Association, Inc.
It also included the signatures from noted patient advocates, such as Robert Miller, Heidi Bauer, Jill Justiss and Jim, Billie and Eric Moore.
Now it is your turn. If you agree that the CDC needs to make the changes listed in the letter, sign this petition. Each signature results in an e-mail being sent to Dr. Unger’s bosses, urging them to direct her to implement the changes:
Stephan Monroe, Ph.D., Director of the Division of High Consequence Pathogens and Pathology
Beth Bell, M.D., M.P.H., Director of the National Center for Emerging Zoonotic Infectious Diseases
Rima Khabbaz, M.D., Deputy Director for Infectious Diseases
Ileana Arias, Ph.D., Principal Deputy Director for the CDC
Thomas Frieden, M.D., M.P.H., Director for the Centers for Disease Control and Prevention
Also, an e-mail will be sent to:
Dinah Bembo, Assistant to the Assistant Secretary of Health
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.
You have the power to repair, restore, resolve and get it right.