In an abrupt break with past history, the new Chief of the CDC’s CFS research program, Dr. Unger agreed to meet with ME/CFS reps to discuss concerns about the CDC’s CFS program. Her predecessor Dr. Reeves had refused several efforts by patient reps to meet. The meeting was prompted by a collective effort by 11 patient advocacy organizations – lead by PANDORA – to marshall their forces to produce change at the CDC.
The meeting, therefore, is notable for two reasons;
a) this is the first time in memory that a large group of patient advocacy organizations have worked together to maximize their voice and it worked; Dr. Unger surely would not have responded to one or two organizations individual requests. This suggests this type of activity is effective and should continue.
b) early in her term Dr. Unger responded to the patient community in a way that no CDC chief has in memory.
Dr. Unger will be putting her stamp on a CDC program that has in the past eschewed collaboration with the patients and many researchers and is regarded poorly by both. Whether this step presages significant changes in the organization remains to be seen. The opportunity for dialogue suggests, however, that at the very least, a more open environment is present at the CDC – a welcome change.
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.”
PANDORA has created a online survey you can use to vote on which of the nine points in the letter to the CDC you feel are most important to the ME/CFS Community. (Click on the title to go to the survey).
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THE NINE CHANGES PROPOSED TO DR. ELIZABETH UNGER AND THE CDC
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.