In the 1980s, little physician or patient-based research existed into M.E. and CFS, and there were few self-help organizations in existence for them. These illnesses were poorly diagnosed and little medical research in Canada existed. Dr. Byron Hyde began to study M.E. in 1984. He went on to establish the Nightingale Research Foundation (NRF) in 1988. Today, his work remains unique in its dedication to the investigation and documentation of actual cases of M.E. and CFS disabled patients.
In the Foundation’s start-up period, it campaigned exhaustively through its public information and outreach initiatives to have Canadian governments recognize the enormous gaps in knowledge about M.E. and CFS. Success was only modest on this front. However, these initial outreach efforts by NRF’s staff and volunteers were rewarded with the creation of many local community-based organizations as well as many provincial and national ones. Today, there are an estimated 300 national and local organizations in Canada, the US, Europe and the UK that provide support and information on research and education on M.E. and CFS - although only a few have actually had the funds to support research and even fewer have engaged in “hands on research” into the nature of M.E. and CFS.
The Foundation has evolved in its activities as steady progress has been made in patient support services and public education. In the early years, it was a membership driven institution with a 6,000 strong membership that included the MEsh Network, with a quarterly journal and other publications produced out of its own building in Ottawa. Lydia Neilson, a former Nightingale officer, developed the MEsh concept at Nightingale. She was an energetic and dedicated worker who always had time to listen to the thousands of patients who called Nightingale’s number. Among other things, Lydia went on to host her own national M.E./FM Network in 1993, contributed to the 2003 Canadian CFS definition committee, and her network has become one of Canada’s primary sources of self-help and outreach to M.E. and CFS patients.
Since its establishment in 1988, the Foundation has hosted and participated in an active program of worldwide speaking tours and research investigations in M.E./CFS epidemics. In 1993, NRF organized a three-day conference in the U.K., the first world symposium on M.E. and CFS with over 800 participants. The Foundation re-grouped after its initial outreach period and focused its efforts on collaborative research with like-minded medical professionals and researchers internationally and on its publishing activities. Its first book, a 725 page encyclopaedic text, The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, with contributions from over eighty world experts on M.E./CFS, was published in 1992. Since then, it has organized and participated in over fifty conferences, symposia and workshops, and continues to publish and share research findings with the M.E. and CFS broader community of stakeholders.