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April 27: CDC Public Meeting on CFS Strategic Research Plan in Atlanta; Register by April 22

  [ 5 votes ]   [ 1 Comment ]
By Federal Register* • www.ProHealth.com • April 22, 2009


[Note: Regarding the following announcement, Fred Friedberg, PhD, President of the IACFS/ME, has issued a "Brief position statement on the CDC 5-year research plan" - beginning with a comment on the short time allowed for submission of stakeholder input.]

On April 27, 2009, 1:00-5:00 PM, the Centers for Disease Control 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. [Ed Note: Reportedly none of the research program's leadership was present at the Reno IACFS/ME conference.] 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 e-mail 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 (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 e-mail contact below. Additional information on visiting CDC is available at www.cdc.gov/about/resources/visitGuide.htm.

For Further Information Contact: CFSResearchPlan@cdc.gov
___
* Dissemination of announcement courtesy of Dr. Marc-Alexander Fluks’ ME-NET newsletter, 15 April 2009. To receive the newsletter, send an e-mail to listserv@nic.surfnet.nl with the text SUB ME-NET [Your Name]




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Article Comments Post a Comment

Unhappy with the definition the CDC is using?
Posted by: QuayMan
Apr 15, 2009
A petition has been set up today by a patient with CFS to complain about the CDC using the empirical/Reeves definition for CFS research. This might help complaints about the definition at this meeting or other meetings such as CFSAC meetings. For anybody interested, the address is http://CFSdefinitionpetition.notlong.com
Reply Reply
 
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