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“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."

— Bonnie Gorman, Founder

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History of MassCFIDS/ME&FM Association PDF Print E-mail

The Massachusetts CFIDS/ME & FM Association is one of the oldest voluntary associations in the United States for patients with Chronic Fatigue Syndrome (CFS or CFIDS) and Fibromyalgia (FM) , and has had a long and productive history

  • helping patients and their families
  • educating doctors and the public
  • advocating for patients and medical research.

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 CFIDS/ME &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. We were founding members of the first national CFIDS advocacy campaign, CACTUS. Our organization has pioneered many critical issues through our advocacy campaigns—giving voice to those with CFIDS & FM."

Accomplishments of our Association

Since 1985, we have

  • Provided direct services to thousands of patients through a wide network of support groups, an Information/Help line, public programs and personal communications.
  • Published The UPDATE, a widely circulated and highly respected 50-page publication with an international readership from 1985 until 2003. It provided information for healthcare providers and patients, including updates on medical research. Many of the excellent articles are available on this website.
  • Raised thousands of dollars for research.
  • Published a Physician’s Primer (1991) which was distributed to all physicians in Massachusetts and requested by patients and clinicians throughout the world. It was the only such handbook for physicians available in the world until very recently.
  • Published a Disability Handbook. This unique, detailed book on the ins and outs of applying for disability in the U.S. is available on this website.
  • Published patient and healthcare provider information online since 1997.
  • Coordinated with other Associations—regional, national and international.

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