Our ongoing programs

The Massachusetts ME/CFS & FM Association today is made up entirely of patient volunteers and their families and friends.

  • We maintain a website with a wide variety of quality content to educate patients, their families, health care providers, and the general public. The new website is updated frequently.
  • We provide information on a wide variety of topics relating to the illnesses, through our website, Information Telephone Line, and our email newsletter.
  • We publish an e-newsletter for distributing current ME/CFS & FM related news including information about events, conferences, lectures, recent articles, new research findings and more.
  • We provide a range of patient services for patients, including physician referral, disability counseling, support group referral, and support through our Information Telephone Line and e-mail. We are in the best position to assist individuals in Massachusetts; however, we can occasionally help those outside the region or we will refer them to their local or state patient groups.
  • We are developing new ways to educate and involve Massachusetts healthcare providers.
  • We are working cooperatively with other associations in the Northeast to develop joint programs for patients and their families, as well as healthcare provider education.
  • We wish to build our Association into a strong force for advocacy in Massachusetts, and to cooperate with other regional and national organizations in advocacy efforts both on the regional and national levels.

We promote membership in our Association as a way of affirming the commitment to our goals and financing ongoing activities.

We need and welcome volunteers, both patients and healthy people, to assist with the work of the Association.

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History of the Association

Our accomplishments

Patient services

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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History of the Association

Our ongoing programs

Patient services

Criteria for Courtesy Membership

No one interested in becoming a member will be excluded because of financial hardship. However, as the Association is an all volunteer organization and depends on membership contributions to provide financial support, we are unable at this time to offer Courtesy (free) membership to everyone.

These are examples of factors we may consider when offering a Courtesy membership:

  • Annual income less than $20,000 for a single individual or less than $30,000 for a family
  • Being eligible for food stamps or free or reduced prices for school lunches
  • Receiving Social Security Disability Income (SSDI)
  • Receiving Supplemental Security Income (SSI)
  • Enrollment in Medicaid (MassHealth in Massachusetts)
  • The payment of $25 annual membership contribution constitutes a significant hardship

To request a Courtesy Membership, please do the following:

  1. Fill out the Membership form on our website; sign up for Courtesy Membership and check the box "I will send payment by check." Submit the form. These steps are necessary to complete the enrollment process.
  2. You may ignore the "Invoice" which will arrive automatically via email.

Courtesy memberships carry all the benefits and privileges of Individual membership.

History of the Association

The Massachusetts ME/CFS & FM Association is one of the oldest voluntary associations in the United States for patients withMyalgic Encephalomyelitis (ME), 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, and advocating for patients and medical research.

Founding the organization

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 [as it was called at the time of these remarks] 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."

Legally named Massachusetts C. F. I. D. S. 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.

 

Celebrating our 25th year

In April 2010 we presented an award to Bonnie Gorman, R.N., a founder of the Massachusetts CFIDS/ME & FM Association. In this short video, Bonnie recounts the early history of the Association, the first voluntary patient association for these illnesses even before they had a name. She tells how, from a single support group begun in 1983, it quickly grew to become a resource for similar groups across the nation, and to provide the wide range of service, support, and education we offer today.

View the video.

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Our accomplishments

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About Our Association


The Massachusetts ME/CFS & FM Association, a 501(c)(3) founded in 1985, exists to meet the needs of patients with  ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), and FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these often severely-disabling physical illnesses. We provide supportive services for patients and their families and advocate for more effective treatment and research.

Our mission

To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research.

What we do

The Massachusetts ME/CFS & FM Association is dedicated to working and advocating for effective medical research and treatments that will both alleviate patient suffering and lead to a cure.

We provide information and supportive services to help patients, their families, and their loved ones cope more effectively with these illnesses.

We work to educate both healthcare providers and the general public, so that ME/CFS and FM will be recognized and understood as serious physical illnesses which can be severely disabling.

More about us

Board of Directors

Strategic Plan 2020

Accomplishments of our Association

History of the Association

Our ongoing programs

Patient services

How you can get involved

Donate

Volunteer

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