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) or 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 severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.
- Last Updated: 04 July 2020 04 July 2020
We are excited to announce a new strategic plan for the Massachusetts ME/CFS & FM Association! We have spent the last year crafting a bold, ambitious and inclusive plan to guide our work in supporting people with ME/CFS and FM and their families, educating health care providers, advocating for social services and building a sustainable future for MassME. A big thank you to those who were introduced to, and who helped refine, the strategic plan during the small group meetings we held this past spring. And a big "Welcome!" to some of our new members who are already benefiting from initiatives described in the plan, such as our expanded support group program. A summary of the plan is included below. For those of you with the energy and interest to delve into the details, please find the full strategic plan here. Let us know what you think!
Can You Help?
We are seeking nominations for new Board Members. The Board will help guide MassME as we implement the strategic plan. There is a lot of work to do and we'll need fresh thinking and talent, especially in the areas of:
• Financial management
• Project management
• Fundraising and donor relations
• Health care and social services
If you would like to learn more about the work of our Board or explore other volunteer opportunities with us, please get in touch through our Contact Us webform.
Leah Williams, Association President
The Massachusetts ME/CFS and FM Association (MassME) is the oldest continuously running state organization supporting and advocating for ME/CFS and FM patients. Over our thirty year history we have continually reevaluated and refocused our activities according to the changing landscape of medical knowledge, of national and international advocacy organizations, and the needs of our members. In 2019 a committee was convened to take stock of our resources and establish clear priorities and actions for MassME.
• Focus on services to patients in Massachusetts
• Support (but not necessarily lead) national efforts in advocacy and visibility
• Don’t try to reproduce what other organizations are better positioned to do
With this strengthened focus, the committee established four ‘pillars’ of the organization, and defined clear projects that MassME could undertake in the next few years to support these four pillars:
Support people and their families
• Improve website information
• Expand support group options
• Increase confidence in doctor referrals
Educate healthcare providers
• Increase the number of ME/CFS knowledgeable primary care physicians and other healthcare providers interested in working with patients in MA
Advocate for social services
• Understand and document the social service needs of ME/CFS patients in MA
• Educate MA social service providers about ME/CFS
• Build social service support capacity
Sustain the Association
• Double membership
• Fill all leadership positions
• Fully fund the operating budget commensurate with this strategic plan
• Support national efforts where we can
- Last Updated: 04 July 2020 04 July 2020
|Massachusetts ME/CFS & FM Association Stands Against Racism|
The Massachusetts ME/CFS & FM Association unequivocally asserts our commitment to standing against racism in all its forms and standing with our black community members. Systemic racism -- and specifically systemic and repeated violence against black Americans -- is an urgent crisis that requires an equally urgent response. We are sickened and heartbroken by the senseless murders of George Floyd, Breonna Taylor, Tony McDade, Ahmaud Arbery, and countless others. We want to be explicitly clear: Black lives matter.
People with ME/CFS and FM might feel frustrated that our disabilities may not allow us to join others in the streets, or join in additional ways we may wish, in this important fight for racial justice. Yet, from our homes and beds, we are committed to engaging and being as active as our bodies and our disabilities allow. Some options for supporting the Black Lives Matter movement include: donating to the families of victims and to protester bail funds, sharing articles and posts from black authors, especially those with disabilities, on social media, supporting black-owned businesses, and contacting lawmakers to demand change. (See #MEAction's list for additional accessible actions.)
The Association's Board also stands with those eager to dismantle the systemic racism built into our healthcare institutions. In addition to the suffering that ME/CFS and FM bring, black people -- and indeed all people of color, as well those in the LGBTQ community and all of the disability community -- who live with these diseases face the additional burden of entrenched bias in our healthcare system. Healthcare free of prejudice is a human right.
The Association is committed to being a safe, inclusive space for support and advocacy, where every black person and person of color living with ME/CFS and FM is treated with respect, is valued for who they are, and is met with compassion. We sincerely thank our members and volunteers for their continued commitment to building with us this loving, accepting and safe place for people with ME/CFS and FM.
If you have questions or comments, you can reach us at our Contact Us web page.
The Board of the Massachusetts ME/CFS & FM Association
- Last Updated: 30 May 2020 30 May 2020
Our champion, Senator Ed Markey (D-MA), submitted a bipartisan letter to the Senate Leadership requesting ME/CFS research funding in future COVID-19 response legislation. You can see the letter here and Senator Markey's press release here. Twelve other Senators signed the letter, including Senators Chris Van Hollen (D-Md.), Cory Booker (D-N.J.), Angus S. King Jr. (I-Maine), Debbie Stabenow (D-Mich.), Kyrsten Sinema (D-Ariz.), Elizabeth Warren (D-Mass.), Jacky Rosen (D-Nev.), Mazie Hirono (D-Hawaii), Kevin Cramer (R-N.D.), Richard Blumenthal (D-Conn.), Michael Bennet (D-Col.), and Dianne Feinstein (D-Calif.).
If you contacted your Senators and they signed, please send them a thank you through Facebook or Twitter. If you contacted your Senators and they did not sign, please contact them again and ask why not. They will have another opportunity to support the ME/CFS community as early as next week when Senator Markey will introduce a Senate Resolution to raise awareness. And keep your eye out for our next action alert.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.