Below is highlighted patient testimony from the CFS Advisory Committee (CFSAC) - May 10 & 11th including Speak Up for ME project to bring awareness for young people with ME/CFS
Sophie Thorpe - 15 year old
Denise Lopez Majano - Mother of ME/CFS patient
Bob Miller - ME/CFS patient
Thank you to all the dedicated advocates that testified during the two day CFSAC meeting
Marly Silverman (PANDORA) and the Speak up for ME Group
May 12th was International Awareness Day for NEI diseases.
Advocates Extraordinaire™ were in full action in Washington DC from May 10-May 13, 2011.
In Washington: A total of 37 advocates from 14 states were part of the PANDORA group in Washington D.C.during Awareness Week for NeuroEndocrineImmune Diseases in Washington DC.
The Advocates Extraordinaire™ joined parents and their children in the May 11th Speak Up About ME gathering and half day Lobby Day that focused on pediatric cases of ME/CFS and fibromyalgia.
PANDORA met with the CDC representing RMCFA on May 26th concerning the CDC ME/CFS program. We will have an update soon on Facebook and in the next e-news link issue