I have devoted substantial energy in the last several years to following the work of, and preparing testimony to, the CFS Advisory Committee to the Department of Health and Human Services. The committee exists to advise the Department on CFS research and issues affecting the lives of people with CFS.
Speak Up About ME organizes the participation of young people with CFS in the twice annal meetings of the Committee. Speak Up also coordinates meetings on Capitol Hill to bring the stories of these kids to Congressional representatives and their staff, and collects and delivers testimony by kids who are too ill to attend. I have been both moved and impressed by what these children and their families have said at CFSAC meetings. They speak honestly about how CFS is affecting their lives now and their hopes for the future.
Denise Lopez-Majano, a leader in Speak Up, has asked me to help spread the word about Speak Up plans for the spring 2012 CFSAC meeting. The date for this meeting has not been set, but Denise is asking young people with ME/CFS and their families to consider participating in whatever way they can. For more information, please contact Speak Up at SpeakUpAboutME@gmail.com.