A Brief History
In the words of our founder, Bonnie Gorman, RN
“When we started the first support group in 1983, I had no idea what this organization would grow into. These illnesses did not even have names, let alone any treatment options then. Now the Massachusetts ME/CFS &FM Association is the oldest patient support organization in the country [for these illnesses.] We expanded into a support group network in 1984, and started our education programs, something very dear to my heart. Ironically, we were still an informal organization in search of a name for our illness. It was then called the “disease of a thousand names”: post-viral fatigue syndrome, chronic mono, neurasthenia, Icelandic disease, myalgic encephalitis, fibrositis, etc.
In January of 1985, the publication of the, then, seminal article in JAMA finally gave our illness a new name (at least for the eighties)—Chronic Epstein Barr Virus (CEBV.) That moved us to formalize our statewide organization and name it the Massachusetts CEBV Association. We also started our highly-acclaimed newsletter, The UPDATE, in 1985—continuing our mission of providing quality medical information to our members, the medical community, and the general public. We then added our information line and lending library, followed by our physician referral and disability guidance. In addition we developed innumerable special programs over the years to better serve our members.
Our advocacy and public awareness campaigns followed at the state, regional, and national levels. Legally named Massachusetts CFIDS Association, the organization has updated its ‘doing business as’ name periodically, adding Fibromyalgia (‘& FM’) in the early 1990s, changing ‘CFIDS’ to ‘CFIDS/ME’ in 2008, and ‘CFIDS/ME’ to ‘ME/CFS’ in 2018. Our official name is now The Massachusetts ME/CFS and FM Association. We are known worldwide affectionately as ‘MassME.'”