Advocacy Updates
Advocacy Alert: 6/1/2009
Ask Secretary Sebelius to Take Action on the CFSAC Recommendations
Updated: VIRTUAL LOBBY DAY ACTION #2
TAKE ACTION
Write to Secretary of Health Sebelius
Kathleen Sebelius is the Secretary of Health and Human Services. She is responsible for all the agencies of the Department of Health & Human Services (DHHS), including the National Institutes of Health (NIH) and Centers for Disease Control & Prevention (CDC). On May 27-28, the federal CFS Advisory Committee met and passed a set of three recommendations, copied below. Please use our form letter to support swift implementation of these recommendations by Secretary Sebelius.
Recommendations from the CFS Advisory Committee
to the Secretary of Health & Human Services
May 28, 2009
Recommendation #1: Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.
We have heard from the IACFS/ME president who represents the scientific CFS community, call for new leadership within the CDC's CFS program. We also learned that a CFS patient group has over 1000 signatures asking for a change in leadership at the CDC's CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership of the CDC's CFS program. We are concerned with input from these diverse groups. We also felt that the 5-year plan offered at our CFSAC meeting was ambiguous concerning what could be accomplished with available resources, and also seemed to lack a bold vision to significantly advance the field.
Approved by unanimous vote.
Recommendation #2: Provide adequate funding to effectively carry out a detailed 5-year plan. This should include immediate progress in these areas:
- Identification of biomarkers and etiology of CFS
- Partnership with organizations representing CFS scientific expertise to create guidelines for adult and pediatric management
- Provide web based guidelines for CFS management given our current state of knowledge and expert opinion
- Provide comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources
Approved by unanimous vote.
Recommendation #3: HHS establish 5 regional clinical care, research, and education centers, centers which will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational and clinical research on CFS.
Approved by unanimous vote.
