Lydia E. Neilson, M.S.M.

Founder and Chief Executive Officer

Lydia founded the National ME/FM Action Network which became a charitable organization on June 18, 1993 for Myalgic Encephalomyelitis (chronic fatigue syndrome) and Fibromyalgia. She continues to be actively involved in bringing awareness and support to the ME/FM community.

Lydia was awarded the Meritorious Service Medal (MSM) on May 30, 2005 at Rideau Hall by Her Excellency the Right Honourable Adrienne Clarkson,  Governor General and Commander-In-Chief of Canada, for spearheading the publication of internationally acclaimed diagnostic and treatment protocols for ME/FM, bringing much-needed information and standardization to these areas in research.

Margaret Parlor

President

Margaret Parlor is originally from British Columbia and moved to Ottawa where she worked for the federal government as a data and policy analyst and as a project and program manager. She  became interested in the issues affecting young people with ME and/or FM, and pressed for changes in the Ontario educational system. Since then she has taken an active interest in many aspects of ME and FM including statistics, health services, research and disability.  She has served as president since 2008 and as editor of the newsletter since 2011. 

Dr. Philipa Corning

Director

Dr. Philipa Corning lives in New Brunswick. Having received her Ph. D. in microbiology and environmental studies, she taught science subjects at high school for 5 years and at massage therapy schools/natural health college over a 10 year period. In addition, she served 23 years in the Canadian Forces. Philipa was President of MESH Ottawa (M.E. Self Help). From 1993-2009, she filled the positions of Vice President and Science Director for the National ME/FM Action Network. During this time, Philipa wrote and co-authored several articles for Quest. Now, she participates as one of the Directors.

Judith Day

Director – Atlantic Provinces

Judith Day is an educator and advocate for the Atlantic provinces for the National ME/FM Action Network and is responsible for setting up self-help groups in Newfoundland and Labrador. Judi was a nurse who was forced to retire due to ME/FM but in her role as the Network’s Director has conducted concerts, road tours, and media interviews in her public campaign to raise awareness for ME/FM and MCS and is currently involved in research projects for our Network.

When time and energy permits, Judi works on her second edition of her book Judging Judi originally published in 2011 to bring medical and legal awareness to ME/FM/MCS while her garden is her therapy.

Sherri Todd

Director – British Columbia and Youth Ambassador

Sherri Todd is a native British Columbian who joined the National ME/FM Action Network in 2000. She has a background in the Health, Wellness, Legal and Entertainment fields. As a result of her interest and experiences in ME/FM issues she has worked with numerous Patients and Care Givers through advocacy, education and awareness, medical/legal support and volunteerism in community service work. In 1988 she co-founded and became President of the Myalgic Encephalomyelitis Society of BC (MEBC). Sherri is proud to have had input into the creation of the Complex Chronic Disease Program at BC Women’s Hospital in Vancouver, which is the first of its kind in Canada. Sherri continues to advocate for patient’s rights, diagnosis, treatment protocols, research and healthy life styles, as a member of the Complex Chronic Disease Programs Community Advisory Committee. 

Dr. Alison Christine Bested

Medical Advisor

Dr. Alison Christine Bested is a specialist in Hematological Pathology and received her Diplomate in Integrative Medicine.  She was trained as a cognitive behavioral therapist and a Clinical Hypnotherapist.  Dr. Bested is the Chair of Integrative Medicine, the Medical Director of the Institute for Neuro-Immune Medicine Clinic and the Director of Student Research in the Dr. Kiran Patel College of Osteopathic Medicine at Nova Southeastern University, Fort Lauderdale, Florida. 

In 2015, she co-authored a Review of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome that was published in the Reviews of Environmental Health.

Dr. Bested coauthored two books: Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, 2006, and The Complete Fibromyalgia Health Diet Guide and Cookbook, 2013.

Dr. Richard Bruno

Medical Advisor

Dr. Richard Bruno is a Clinical Psychophysiologist specializing in Post-Polio Sequelae, and created and directs The Post-Polio Institute and International Centre for Polio Education and Research. His research found that fatigue in polio survivors was associated with clinically impaired attention on neuropsychological testing, a blunted ACTH response to stress and white and gray matter lesions on MRI in the brain's activating system, which is indistinguishable from those in patients with ME/CFS. In 1999, Dr. Bruno performed the first study of the psychophysiology of chronic fatigue in children and adolescents, confirming that chronic fatigue is related to impaired attention that is likely due to brain activating system damage. He served on the Committee on Standards for the Evaluation and Treatment of Chronic Fatigue Syndrome and wrote "Rehabilitation of CFS: A Multidisciplinary Approach" for the 2002 Consensus Manual for the Management of Chronic Fatigue Syndrome published by the New Jersey Academy of Medicine as well as other books. 

Dr. Leonard Jason

Medical Advisor

Jason has served as the Vice President of the International American Association of CFS/ME. He also served as the Chairperson of the Research Subcommittee of the U.S. Chronic Fatigue Syndrome Advisory Committee. Jason has edited or written 28 books, and he has published over 800 articles and 100 book chapters. He has served on the editorial boards of ten psychological journals. Jason has served on review committees of the National Institutes of Health. He was given with the Dutch ME-Foundation International ME-Award for 2003 for outstanding work in the field of CFS. He also was presented in 2007 with a Special Contribution to Public Policy award by the Society for Research and Action. Dr. Jason was also awarded the 2011 Perpich Award for distinguished service to the IACFS/ME and the ME and CFS community. In 2013, he was presented with the DePaul University’s College of Science and Health’s Excellence in Research Award. In 2015, he was presented the American Psychological Association’s award for Distinguished Professional Contributions to Applied Research. 

Dr. Eleanor Stein

Medical Advisor

Dr. Stein believes strongly in the power of accurate information.  She has organized many public and professional education events.  Her manual “Let Your Light Shine Through: Living with ME/CFS, FM and MCS” is currently being updated (2019).  Her website www.eleanorsteinmd.ca contains a resource page highlighting many useful books and websites and the newsletter page summarizes new research of interest to the field.  The website is updated as her practice and interests evolve. 

Dr. Ellen N. Thompson

Medical Advisor

Dr. Ellen N. Thompson spent five years in general practice. She then did a residency training program in anaesthesia during which she spent time at McMaster-Chedoke Pain Clinic in Hamilton in their pain treatment unit. Dr. Thompson lectured to Ottawa medical students about pain and was involved in curriculum planning at the University of Ottawa. Over the past ten years, she has given talks about aspects of chronic pain and the management thereof to local, provincial and national meetings.

Hugh R. Scher

Legal Counsel

Hugh R. Scher practices Law at Scher Law Professional Corporation, Toronto, in disability insurance and CPP litigation as well as employment and Human Rights Law. He has represented dozens of individuals from across the country with ME/CFS and Fibromyalgia in disputes with long-term disability insurers and Revenue Canada. He has also written numerous articles for our organization's newsletter QUEST and speaks on our behalf of matters of concern to the ME/CFS and FM communities.

John Wodak

Network Liaison

John Wodak, CPP & Disability Advisor. John came to North America in 1963, having completed his education in England.  He began volunteer work with the ME Society of Edmonton in 1993, after his wife was diagnosed with ME/CFS and FM, and after his retirement from working for the Alberta government.  John has recently retired from active case-work, after 25 years and almost 800 “clients”, but is continuing in his advisory roles with the Network and on the federal government’s CPPD Client and Stakeholder Roundtable.

Mike Lapenna's

In 2017, Mike established a global registry of ME (chronic fatigue syndrome) patients in order to inform them of active ME studies needing participants.  Mike’s goal is to help researchers progress their studies faster so that they'll uncover a treatment and solution for ME sooner.  

Today, Mike and the National ME/FM Action Network keep in touch by sharing ideas for helping sufferers and increasing ME awareness.  Mike also engages in other volunteer endeavors such as Habitat for Humanity and Hospital for Sick Kids.  

As a day time profession, Mike practices information architecture with financial institutions.  Mike has an MBA from McGill University and lives with his family in Toronto.  Mike has a sister who is a long time sufferer of ME.  

To register for the ME Research Registry, please go to:  https://meresearch.info

Dr Amir Landi

Research and Medical Adviser

Amir Landi, MD, PhD, Senior Research Scientist, Li Ka Shing Applied Virology Institute, Department of Medical Microbiology & Immunology, University of Alberta.

Dr. Landi is a senior scientist and principal investigator and holds an MD from Tehran University of Medical Sciences as well as a PhD focused on immunology, vaccines and virology from the University of Saskatchewan. Dr. Landi is an executive member of ICanCME Network, a member of the ME/CFS committee of the Alberta Medical Association, a Research/Medical advisor to the Canadian National ME/FM Action Network, and has five issued and 12 ongoing patents in the field of diagnostics and vaccines. Dr. Landi is skilled in clinical medicine, immunology, vaccinology, basic, translational and clinical research, and has been working on the immunologic/virologic aspects of ME/CFS since 2010.