CDC Stakeholder Call – Open Invitation

CDCIn the fall of 2012, the U.S. Centers for Disease Control and Prevention (CDC) began a new series of conference calls to update stakeholders about ME/CFS-related research activities and other topics of interest. Information on the next call, scheduled for September 10, 2013, is provided below from their listserv and website. To sign up for this call or to join the listserv, please send an email message directly to CDC at

We believe it would be beneficial to the ME/CFS community if we spoke collaboratively on this call. If you plan to participate, we’d like encourage you to submit the email question below in advance to (Questions for the Guest Speakers and CDC can be submitted only via email.)

If we can help researchers be more aware of these minimum data requirements, it makes their work more standardized and comparable to other ME/CFS research. This kind of synergy will help move research forward, faster.

The use of similar and standard measures is important to be able to compare research results between studies.  The multi-site NIH-sponsored study on XMRV led by Dr. Lipkin is a good example of this.  The paper published in Brain, Behavior and Immunity titled, “Minimum data elements for research reports on CFS” suggests the types of data to collect. If we can help more researchers be aware of this approach, it would help results be more comparable and increase the evidence-base of ME/CFS research.

Please address this issue on the call on September 10th. Thank You.

Information for the upcoming call:

Tuesday, September 10, 2013 | 3:00 pm – 4:00 pm EST

CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

 Call number: 888-946-3511

Participant Code: 6029106

Meeting Agenda

3:00pm   Welcome and Telephone Overview

3:05pm  Updates from CDC – Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch Centers for Disease Control and Prevention

3:15pm  “Infection and Immunity in CFS” – W. Ian Lipkin, MD

John Snow Professor of Epidemiology and Director Center for Infection and Immunity Mailman School of Public Health Professor of Pathology and Neurology College of Physicians & Surgeons Columbia University

3:45pm  Questions from CFSPCOCA – Call Mailbox for Guest Speaker and CDC

Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

Please note that questions for the Guest Speakers and CDC can be submitted only via email at This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls. If you would like to be added to the call list, please send an email to

Contact for CFSPCOCA Conference Call: