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THURSDAY MORNING, Aug 9: CDC Conference Call on Key ME/CFS Research Issue

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Aug 9 update: this event, held the morning of Aug 9, is now completed. Reportedly the CDC will hold aother in December, giving three weeks’ notice (this time it was essentially one day) Questions for that meeting, again, reportedly can be emailed to CFSPCOCACall@cdc.gov.

On AUG 8, a Co-Cure Listserv poster shared the news, picked up from the CFSAC Listserv, of an open ME/CFS conference call with the CDC. It is set for TOMORROW, AUGUST 9 from 8:00-9:00 am Pacific time (11:00 am – 12:00 noon Eastern Time).

Importantly, after some CDC “update” comments, the call (we can listen only & CDC will not record it) will feature:

• 20 minutes of comments by Dr. Lenny Jason, on the need to identify similar patients for ME/CFS studies and trials

• 5 minutes for Dr. Jason to address questions submitted by email to him (submit yours now to CFSPCOCACall@cdc.gov)

• 10 minutes for the CDC (presumably Dr. Unger) to address questions emailed to CDC (submit yours now to CFSPCOCACall@cdc.gov)

Details on how you can join this toll-free conference call are provided in the announcement below, but involve:

• Email now requesting that you be added to the call list, to CFSPCOCACall@cdc.gov

• At the time of the call, dial 866-705-4314 (then give access code 78687644)

____________________________________________

THE ANNOUNCEMENT

Thursday, August 9, 2012
11:00 am to 12:00 pm EDT

CDC’s CFS Patient-centered outreach and communication activity (PCOCA) Conference Call
We invite you to attend the first CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call. The call information is listed below. Please note that questions for the Guest Speaker and CDC can be submitted only via email at CFSPCOCACall@cdc.gov. 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 CFSPCOCACall@cdc.gov.

ACCESS INFORMATION
Please note: this call will NOT be recorded.

Toll-free Number: 866-705-4314
Participant passcode: 78687644 (Participants will be in listen mode)

A limited number of phone lines are available for each call, thus, if possible we kindly request if there are multiple participants in one location that you dial-in on a single line. Thank you for your cooperation.

Meeting Agenda [Eastern Time]

11:00 am Welcome and Telephone Overview

11:10 am Updates from CDC – Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention

11:25 am Expert Guest Speaker – Leonard Jason, PhD
Director, Center for Community Research, DePaul University
“Issues in Identifying Similar Participants for CFS Studies”

11:45 am Questions from CFSPCOCA Mailbox for Guest Speaker

11:50 am Questions from CFSPCOCA Mailbox for CDC

Please note that questions for the Guest Speaker and CDC can be submitted only via email atCFSPCOCACall@cdc.gov. This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls.

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.

Contact for CFSPCOCA Conference Call: CFSPCOCACall@cdc.gov

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