Advocacy Updates

Advocacy Alert: 4/27/2009

Details on CDC's Efforts to Obtain Stakeholder Input

This updated information posted at http://www.cdc.gov/cfs/meetings/2009_04.htm is being passed along to Grassroots Action Center subscribers; see bottom of message for instructions on how to join today's meeting by telephone:

CDC seeks input to shape a CFS strategic research plan

Acting on a recommendation from an external peer review of CDC's CFS research program conducted in November 2008 and in preparation for presenting a draft 5-year strategic research plan to the CFS Advisory Committee in May 2009, CDC is seeking input from interested parties on issues that CDC will consider as it develops this research plan.

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. CDC is seeking input on the goals and objectives of its 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

DRAFT CFS Strategic Research Plan General Outline

Public input can be submitted in several ways and at various stages:

• Oral comments can be made in person or via telephone (see details below).
• Written comments may be sent by mail or email:
  CFS Research Plan
  MS A-30
  1600 Clifton Road, NE
  Atlanta, GA 30333
  CFSResearchPlan@cdc.gov

Stakeholders' Meeting-April 27, 2009, 1:00-5:00 pm EDT

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.

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 agenda is listed below:

Stakeholders' Meeting Agenda - April 27, 2009 Time Topic

• 1:00 PM General welcome, review meeting logistics
• 1:05 PM Welcome from CDC Acting Director
• 1:10 PM CDC CFS Research Program; review of current activities and proposed next steps
• 1:40 PM Strategic plan development process; activities to date and plan going forward
• 2:00 PM In-person Public Comment (5 minute limit)
• 3:00 PM Telephone Public Comment (5 minute limit)
• 4:00 PM Additional Public Comment (5 minute limit; in-person or telephone, as needed)
• 5:00 PM Wrap up & Adjourn

Beginning at 12:45p.m. ET on the day of the meeting, participants can use the below call-in information to listen to the full proceedings and provide input during the allotted time (see agenda above). Please note that priority will be given to those who provided prior written notification of their intent to speak. To allow for wider participation, each person's comments will be limited to five minutes.

Telephone Number for U.S. Callers: 1-888-790-3448 (Toll Free)
Telephone Number for International Callers: 1-517-308-9438
Participant Passcode: 7629727

Comments used in developing the May 2009 draft of the plan must be received at CDC by May 1, 2009. The draft will be presented to the CFS Advisory Committee at their May 27-28, 2009, meeting and afterwards made available at www.cdc.gov/cfs.

General comments regarding the five-year CFS Research Plan must be received at CDC by June 30, 2009.

For Further Information Contact:
CFSResearchPlan@cdc.gov