Advocacy Alert: 4/14/2009
NOTICE OF PUBLIC MEETING AT CDC
The CFIDS Association of America just received this advance notice of the following public meeting. The Federal Register announcement, copied below, is expected to be published on April 15. The Association encourages all those who are interested in the CDC's research to express their views, in person or in writing. Please send your statements directly to CDC at CFSResearchPlan@cdc.gov.
CDC Stakeholders' Meeting on CFS Strategic Research Plan
On April 27, 2009, 1:00-5:00 PM, CDC will host an open meeting concerning chronic fatigue syndrome (CFS). The meeting will take place at CDC's Global Communications Center, Building 19, Auditorium B2, 1600 Clifton Road NE, Atlanta, Georgia 30333, and is open to the public, limited only by the space available.
The purpose of the public meeting is to solicit input from interested parties on issues that CDC will consider as it develops a five-year strategic plan for its CFS research program. Input is sought only on the CFS strategic research plan, not on CDC's overall CFS program. As CDC is one of many institutions conducting research on chronic fatigue syndrome, the strategic plan will only address research that is within CDC's purview.
Topics Include: The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS. The agenda will focus on the goals and objectives of CDC's CFS research program in five major categories:
- Studies of Defined Populations
- Provider-based Patient Registries
- In-hospital Clinical Studies
- Laboratory Studies
- Provider and Public Educational Intervention Research
The agenda does not include development of consensus positions, guidelines, or discussions or endorsements of specific commercial products. Agenda items are subject to change as priorities dictate. Members of the public wishing to make an oral statement during the meeting should limit their remarks to five minutes and should address the research agenda. Written comments and suggestions from the public on the research agenda are encouraged and may be submitted to the email address listed below by April 22, 2009. While CDC will carefully consider the individual comments and opinions it receives, it will retain discretion in its decision-making process. A draft strategic plan will also be presented at the Chronic Fatigue Syndrome Advisory Committee meeting held May 27-28, 2009 (http://www.hhs.gov/advcomcfs/).
Background: CDC recently solicited and considered recommendations from an external review panel that evaluated the research and professional education components of the CFS research program. The panel's report summarizing the findings of the peer review has been published on the CDC CFS website at www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf. In brief, the panel noted that: (1) the CDC team currently leads the world in both the breadth and depth of their research into CFS; (2) the efforts of CDC have highlighted the public health importance of CFS; (3) all current research projects address important issues; and (4) CDC is uniquely positioned to conduct a broadly based research program derived from the population, a large-scale educational outreach program (particularly to healthcare professionals) and to provide expert web-based resources for patients, their families and non-healthcare professionals. The report included several valuable recommendations which CDC has begun to implement, starting with the development of a strategic plan to drive the program's research, prevention, and control activities for the next five years. This meeting will provide input to that strategic plan.
Persons anticipating attending the meeting are requested to send written notification by April 22, 2009, including name, organization (if applicable), address, phone, fax, and email addresses to the contact below. Additional information on visiting CDC is available at http://www.cdc.gov/about/resources/visitGuide.htm.
For Further Information Contact: CFSResearchPlan@cdc.gov