Advocacy Updates
Advocacy Alert: 9/11/2009
CDC Posts Response to Input on Its Draft 5-year Plan
In a continuing effort to keep the community informed about the U.S. Centers for Disease Control and Prevention's (CDC) planning process for its chronic fatigue syndrome (CFS) research program, the CFIDS Association shares the following two-part update:
Part One: New Information on CDC's Web
On September 1, 2009, CDC posted the following message on its web site at http://www.cdc.gov/cfs/input_research_plan.htm
"Input on CDC CFS Strategic Research Plan
Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America's Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.
"Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).
"CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas. To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here."
Part Two: Update on CFIDS Association Efforts
With a new Administration and Congress seeking to reform the U.S. health care system and to measure the performance of existing government programs, the CFIDS Association is reinvigorating its public policy efforts to capitalize on both the urgent need and opportunity for change. Here is an update on our efforts to strengthen CFS research at the U.S. Centers for Disease Control and Prevention (CDC).
1. CFS Research Plan: CDC is completing a strategic research plan that will drive the program's research, prevention and control activities for the next five years. This plan is expected to incorporate the diverse input received from the November 2008 peer review, the April 2009 stakeholders meeting, the May 2009 CFSAC meeting, members of the public, the CFS research community, and organizations including the CFIDS Association of America. (On June 26, 2009, the CFIDS Association provided detailed written recommendations to CDC for refining the draft 5-year research plan. See http://www.cfids.org/cfidslink/2009/070108.asp for links to this letter and other resources.)
We continue to provide additional input and recommendations to CDC at multiple levels as this process proceeds. Based on CDC's stated intention to complete the planning process by September 30, 2009, we anticipate reviewing an updated agency plan at the upcoming meeting of the CFS Advisory Committee (October 28-29, 2009) that appropriately leverages the 25 years of accumulated evidence and investment to date of more than $100 million in public funds. CDC Director Thomas Frieden is expected to soon announce an agency-wide reorganization that may affect programs and personnel.
2. Education and Partnership: Earlier drafts of the five-year plan have described a major goal of CDC's CFS Research Program to be providing evidence-based information to the public and health care providers. CDC has also stated its intention to create new partnerships with pharmaceutical companies and other collaborators to aid in clinical intervention studies and pharmacologic trials targeting pathophysiologic pathways involved in CFS.
We will continue to monitor CDC to ensure a close alignment between the public's CFS needs and these goals of the CFS research program. In particular, we will advocate for: the inclusion of key CFS indicators into national surveys and surveillance systems conducted by CDC (e.g., National Health and Nutrition Examination Survey (NHANES), Vaccine Adverse Event Reporting System (VAERS)); support for CFS-specific funding opportunities to validate the biological basis of CFS; and, distribution of educational materials for patients, caregivers and health care professionals that appropriately describe the identification, diagnosis, and management of CFS.
3. Enhancing Access to Research Data: CDC has indicated that it shares our philosophy that research data should be made available to the public. To that end, agency officials must work with the CDC's Office of Science and Technology Policy, the U.S. Department of Health and Human Services and others to develop procedures to implement these goals in a timely manner consistent with federal laws and policies that emphasize the value of data-sharing and deliver greater transparency.
The CFIDS Association will continue to advocate for public access to the epidemiologic, clinical, and laboratory data from all publicly-funded CFS studies conducted by intramural and extramural scientists since 1984. We are sensitive to privacy and security safeguards to protect personal identifiers and information of individual study participants.
4. Clinical Research Network Support: CDC has stated an intention to develop a framework for collaborating more fully with the leading CFS researchers. As part of its five-year plan, CDC proposes to include workshops and international research networks with a focus on developing an international consensus regarding the clinical management of CFS and the diagnosis of CFS in clinical and research settings, and to encourage data sharing through the establishment of an international CFS research network.
The CFIDS Association and the National Institutes of Health are developing a framework for collaboration among CFS investigators in the United States. We hope the CDC will partner with us to make this network a success in defining the pathophysiology, identify biological markers and risk factors, and ultimately to promote curative therapies and prevention strategies for CFS.
Through its formal communications CDC has stated its commitment to establishing new levels of partnership in advancing an integrated public health strategy for CFS. The CFIDS Association of America has articulated clear expectations for objective measures of progress toward CDC's stated goals and objectives. While CDC works to strengthen its CFS program the Association will continue to foster productive collaborations in its mission to make CFS widely understood, diagnosable, curable and preventable.
