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On-The-Fly Reports from the May 5 & 6 CFS Advisory Committee Meeting in Washington, DC, From PANDORA President Marly Silverman


Fibromyalgiasupport.com

05-08-2008

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Marla (Marly) Silverman thanks the many patients and advocates who contacted PANDORA in the past few weeks to submit their photos and messages for the Empty Chair ProjectR at the CFSAC meeting in Washington May 5 & 6.

The response was so enthusiastic that the PANDORA volunteer staff were overwhelmed by your hundreds of supportive e-mails, pictures & letters – so many that they haven’t been able to acknowledge everyone yet and are thinking of creating an Empty Chair Project Traveling Photo Exhibition.

You can share Marly’s informal daily reports on highlights of the CFSAC meeting on her blog (http://agentforchange.blogspot.com) – and learn about advocacy and Awareness Day activities at the PANDORA website (http://www.pandoranet.info).

With a continued show of strong ME/CFS community interest, the hope is that HHS will fund recordings/videos of presentations in future meetings. But meanwhile, we will thankfully look to attendees such as Marly and PANDORA’s Public Policy and Community Advisor Rebecca Artman, Phoenix Rising reporter Cort Johnson (http://phoenix-cfs.org), Vermont CFIDS Association President Rik Carlson (http://www.monkeyswithwings.com/vtcfids.html), and other stalwarts to keep us informed.

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