Lydia Neilson

Lydia Neilson has been the Founder and Chief Executive Officer at the National ME/FM Action Network, Ottawa, Canada, since June 1993. She was instrumental in hosting the 10th International IACFS/ME Research and Clinical Conference held on September 22-25, 2011 in Ottawa, Ontario, Canada. She serves as the editor of Quest, the ME/FM Action Network newsletter.

Ms Leilson developed ME/CFS after an Epstein-Barr virus infection in December 1985, which left her housebound for several years. As she recovered she put her limited energy into advocacy, eventually establishing the National ME/FM Action Network, an organization dedicated to the support, advocacy, education and research of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Fibromyalgia.

Awards

 * 2011, IACFS/ME Special Service Award - for outstanding personal effort and contribution to the CFS/ME community
 * 2011, Governor General's Meritorious Service Medal, Civil Division, in recognition of her achievements that brought benefit or honour to Canada

Talks & interviews

 * Sept 2011, - "Advocacy (ME/FM Action Network) - Lydia Neilson" at the 10th International IACFSME Conference, Patient Agenda

Online presence

 * LinkedIn
 * ME/FM Action Network Website
 * Unheard Voices Blog