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 (http://www.pandoranet.info) 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.
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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.