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 Neilson 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.

Ms Neilson spearheaded the development of the ME and FM Clinical Definitions and Guidelines for Practitioners which has become known as The Canadian Definitions worldwide.

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

 * Sep 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