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[edit | edit source]
- 2011, IACFS/ME Special Service Award - for outstanding personal effort and contribution to the CFS/ME community</ref>
- 2011, Governor General's Meritorious Service Medal, Civil Division, in recognition of her achievements that brought benefit or honour to Canada
Talks and interviews[edit | edit source]
- Sep 2011, - "Advocacy (ME/FM Action Network) - Lydia Neilson" at the 10th International IACFSME Conference, Patient Agenda
Online presence[edit | edit source]
See also[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
- "IACFS/ME Awardees". IACFS/ME. Retrieved Apr 23, 2020.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.