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- Last Updated: 07 December 2024 07 December 2024
👋 Become a member of the Massachusetts ME/CFS & FM Association
🤝 Explore the patient services we offer
📬 Sign up for our newsletter to learn more about Association activities
💵 Support the Massachusetts ME/CFS & FM Association
▶️ Visit the Massachusetts ME/CFS & FM Association YouTube channel
👨⚕️ Refer a Doctor
December Links:
📄 Read the December Newsletter
November Links:
📄 Read the November Newsletter
October Events:
September Links:
📄 Read the September Newsletter
August Links:
July Links:
June Links:
♿️Support Team MassME at the 2024 Boston Waterfront 5K on June 9 The donation page will be accessible until June 20th. Help us reach our fundraising goal of $15,000!
May Links:
April Links:
March Links:
🙋 Massachusetts Residents, Call to action: Fill out our Advocacy Contact Form
February Links:
📄 Read the Februaury Newsletter
January 2024 Links:
December 2023 Links:
📄 Read the December Newsletter
November 2023 Links:
📄 Read the November Newsletter
📽️Watch Now! Sunday Conversations "What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"
October 2023 Links:
👥 Register for MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed Yong"
September 2023 Links:
📄 Read the September Newsletter
📰 Read the Boston Globe article catching up with Massachusetts Long Haulers
✏️ Take the 2023 Massachusetts Dept of Public Health Community Health Equity Survey
August 2023 Links:
👥 Register for Sunday Conversations: Living with Chronic Illness - August 20, 2023
July 2023 Links:
📽️Watch MassME Turns 40! Kickoff event: ZOOM through 40 years of ME/CFS with MassME!" Sunday, June 18, 2023, 4 p.m. Eastern Time
June 2023 Links:
May 2023 Links:
April 2023 Links:
March 2023 Links:
February 2023 Links:
📰 Read about how Long Covid's affects the ability of patients to work in the New York Times
👥 Register for our young adult support groups on February 7th and February 18th
📄 Read the Februrary newsletter
January 2023 Links:
📽️ Watch the video from our Sunday Conversation on 'The Long Haul' with Ryan Prior and Cynthia Adinig
🩺 Learn more about our need for healthcare provider recommendations
🧑⚕️ Recommend a healthcare provider to MassME
📰 Read an article about the practice of pacing in the Boston Globe
📄 Read 'Long COVID: major findings, mechanisms, and recommendations' from Nature Reviews Microbiology
👨⚕️ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS
📃 Read an excerpt from Ryan Prior's new book in Newsweek magazine
December 2022 Links:
💵 Support our work with a year-end donation!
👨⚕️ Watch Dr. Anthony Komaroff's talk on ME/CFS and Long Covid from our 2022 Annual Meeting
📖 Read about the update to medical coding of ME/CFS in the United States
🚴 Watch Dr. David Systrom discuss the pathophysiology of exercise intolerance in ME/CFS
📄 Read our updated resources on applying for Social Security Disability
🙋 Learn more about volunteer opportunities with MassME!
📽 Watch Dr. Khosro Farhad's talk on Small Fiber Polyneuropathy in Fibromyalgia
🦠 Read Time Magazine's article on post-viral illness
👨⚕️ Watch Dr. Anthony Komaroff address questions from the audience during our 2022 Annual Meeting
🗞 Read an article about about Brain Fog in the Washington Post
📰 Read about racial disparities in receiving care for ME/CFS and Long Covid in the Boston Globe
November 2022 Links:
⚓️ Learn more about why our logo is the Sankaty Head Lighthouse
💰 Learn more about becoming the MassME treasurer and apply!
📺 Watch ABC News Live's segment on Long Covid
🎙️ Listen to an interview with Ryan Prior on #MEAction's Chronically Complex podcast
🗂️ Read about new rules regarding free, digital access to your health records
💻 Read a write-up on our annual meeting from Health Rising by Cort Johnson
October 2022 Links:
📽 Watch a video on how Traditional Chinese Medicine can help those with ME/CFS and Long Covid
📽 Watch a video on how ME/CFS and Long Covid are viewed in Traditional Chinese Medicine
📰 Read the Boston Globe's article on how Long Covid impacts patients financially
🦠 Read the Boston Globe's resource guide for Boston-area Long Haulers
🤝 Explore the patient services we offer
📽 Watch the videos from our September Sunday conversation on Traditional Chinese Medicine
✋ Learn about volunteer opportunities with MassME
📖 Read about the update to medical coding of ME/CFS in the United States
September 2022 Links:
🗞 Read Ed Yong's article on ME/CFS and Long Covid in The Atlantic
💻 See Senator Markey's post about Ed Yong's article on ME/CFS and Long Covid in The Atlantic
👨⚕️ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS
🌅 Learn more about the new 5-session course "Coping with ME/CFS," and register
🏛 Read coverage of the #MillionsMissing protest in Washington, D.C. from The Hill
🎥 Watch the video from our event 'Invisible Disabilities: Long COVID and other Post-Infectious Chronic Illnesses' (click here to see a version with ASL interpretation)
🗺 Read the MassME strategic plan
📰 Read Dr. Wes Ely's Boston Globe opinion piece about the effects of Long Covid
📽 Watch Dr. Khosro Farhad's talk on Small Fiber Polyneuropathy in Fibromyalgia
🦠 Read Miriam Tucker's WebMD article on ME/CFS and Long Covid
🧠 Watch Dr. Michael VanElzakker's talk on ME/CFS at the Intersection of the Nervous & Immune Systems
August 2022 Links:
⚕️ Read Health Rising's dive into Dr. Ian Lipkin's latest research paper
📽 Watch Dr. Ian Lipkin's Talk: 'An Interim Report on Solving the Mysteries of ME/CFS'
🔬 Read an interview with Dr. Avindra Nath about research into Long Covid and ME/CFS
🙋 Express interest in joining the MassME Board
🦸 Learn more about joining the MassME Board
📽 Watch a PSA about Long Covid from the Solve ME/CFS Initiative
⏳ Learn more about the 'How Long?' campaign from the Solve ME/CFS Initiative
📆 Read about the history of the Massachusetts ME/CFS & FM Association
🩺 Learn more about the CNE course about ME/CFS for school nurses and register
🖍 Browse our back to school resources for educators and school nurses
📽 Watch a panel discussion of the film 'Unrest' filmed in 2018 at the Mass Dept of Public Health
🧑⚕️ Read about how ME/CFS is gaining new respect as researchers realize its similarities to Long Covid
👥 Register for the August Sunday Conversation!
🧠 Watch Dr. Michael VanElzakker discuss the effects of ME/CFS on the nervous system
July 2022 Links:
🚴 Watch Dr. David Systrom discuss the pathophysiology of exercise intolerance in ME/CFS
⚓️ Learn more about why our logo is the Sankaty Head Lighthouse
♿️ Read the Proclamation on the Anniversary of the Americans with Disabilities Act
📽 Watch Dr. Donna Felstenstein give an overview of the clinical aspects of ME/CFS
☀️ Watch the CBS Sunday morning segment about Long Covid
📽 Watch Dr. Vera answer questions about whole person health approach to ME/CFS and Long Covid
June 2022 Links:
📽 Watch Dr. Vera's presentation on the whole person health approach to ME/CFS and Long Covid
🚌 Read about the need to plan for students with Long Covid in the coming school year
📽 Watch the Empower M.E. Roundtable event with state advocates from the Solve ME/CFS Initiative
📖 Read about the update to medical coding of ME/CFS in the United States
📢 Watch #MEAction's #MillionsMissing 2022 Global Event
📽 Watch the Q&A from our recent Sunday Conversation on fibromyalgia
🏳️🌈 Help people with disabilities and chronic illness keep safe during Pride Month
🏫 Read about Congressmen McGovern and Raskin's visit to UMass Chan Medical School
📽 Watch a video of two patients describing their experiences with Fibromyalgia
May 2022 Links:
📽 Watch a video of Dr. Paul Monach providing an overview of Fibromyalgia
📽 Watch the videos from our May Sunday conversation on Fibromyalgia
🗞 Read Leah Stagnone's article about ME/CFS and Long Covid awareness from the Concord Monitor
April 2022 Links:
📽 Watch the videos from our April Sunday Conversation: "Working With Your Healthcare Provider"
🏥 Read an article about Long Covid and gaslighting by physicians
📈 Read an article re-calculating the impact of ME/CFS in the wake of Long Covid
📽 Watch the Q&A from our Sunday Conversation about functional medicine
📑 Read an announcement on a new comprehensive government effort to address Long Covid
👨👩👧👦 Tips on how you can support friends and loved ones with ME/CFS
March 2022 Links:
📜 Read about Tim Kaine's recent discussion of the CARE for Long Covid Act
🏛 Learn more about meeting with members of Congress during Advocacy Month in May
🏛 Información en español sobre el Mes de la Abogacía 2022 en Mayo
📃 Read a essay on being a mother with chronic illness
📽 Watch MassME member Bob Robitaille speak about his family's experience with applying for disability
🎨 Learn more about our new art therapy group
📽 Watch Ron Beluso, Esq speak about an attorney's role in the process of applying for disability
📄 Read Time Magazine's article about solving the puzzle of Long Covid
📰 Read the Boston Globe review of 'The Invisible Kingdom: Reimagining Chronic Illness"
📽 Watch Ken Casanova's Talk on Applying for Disability
February 2022 Links:
🗞 Read the New York Times article about exercise intolerance in ME/CFS and Long Covid
🚴♂️ Watch Dr. David Systrom's talk on exercise intolerance in ME/CFS
📽 Watch our February 2021 book event for The Puzzle Solver
⭐️ Recommend a health care provider to us
🙏 Read an appeal for health care provider recommendations from our Patient Care Coordinator
👩⚕️ Watch rehabilitation physician Dr. Alba Azola reflect on she has learned about ME/CFS
January 2022 Links:
👨💻 Watch occupational therapist Amy Mooney speak about the role of PT and OT in ME/CFS and Long Covid
😷 View resources for Long COVID/PASC patients
💙 Read our tribute to Dr. Ron Tompkins
🧠 Learn about Dr. Michael VanElzakker's study on neuroinflammation in Long Covid
📰 Read Jennie Spotila's opinion piece in the Philadelphia Inquirer: "I Have a Chronic Illness. During COVID, isn't My Life Worth Protecting?"
👨⚕️ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS
💬 Learn about 'Sunday Conversations,' our new monthly speaker series
📄 Read Cort Johnson's summary of our October annual meeting on his Health Rising blog
👩💻 Watch an interview with MassME member Rivka Solomon on ME/CFS Alert
December 2021 Links:
📒 Read a summary of the most interesting ME/CFS research of 2021 by the ME/CFS Skeptic Michiel Tack
📽 Watch ''The Tangled Story of ME/CFS,' the newest film from Dialogues for ME/CFS
📖 Read the 1990 Newsweek article on ME/CFS
🎧 Listen to an NPR program discussing Long Covid as well as ME/CFS
💉 Learn about vaccination opportunities in Massachusetts for people with disabilities
- Massachusetts in-home vaccination program
- Vaxabilities vaccination events for people with disabilities and sensory sensitivity
👨⚕️ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS
👩🏿🎨 Read about Ijeoma Ogwuegbu, a Nigerian artist with fibromyalgia
- Dr. Derya Unutmaz's talk: "Metabolic and Immunilogical Perturbations During ME/CFS"
- Dr. Maureen Hanson's talk: "Searching Plasma for Clues to ME/CFS"
- Dr. Lucinda Bateman's talk: "Clinical Perspective and Impact of Long Covid"
- Q&A with all five researchers
📔 Read our primer for people who are newly diagnosed with ME/CFS
👥 Read about how people can be a true and helpful friends to someone with ME/CFS
📰 Read the article from The Atlantic: 'Even Health Care Workers With Long COVID Are Being Dismissed'
November 2021 Links:
👩💻 Learn more about our new monthly discussion group and register
📞 If you live in Massachusetts and would like to receive a physician referral, contact us
- Dr. Avindra Nath's Talk: 'Comprehensive NIH Intramural Study of ME/CFS'
- Dr. Ian Lipkin's Talk: 'An Interim Report on Solving the Mysteries of ME/CFS'
📒 View the MassME handbook on applying for disability
📖 Read the 1990 Newsweek article on ME/CFS
💻 Connect with us on LinkedIn!
🔬 Read about the ME/CFS research of Drs. Liisa Selin and Anna Gil at UMass Chan Medical School
October 2021 Links:
🌟 Learn more about our event 'Advances in Our Understanding of ME and the Effects of Long Covid'
🎥 Watch the video from our event 'Invisible Disabilities: Long COVID and other Post-Infectious Chronic Illnesses (click here to see a version with ASL interpretation)
💻 Read Cort Johnson's post about our upcoming annual meeting on Health Rising
September 2021 Links:
🌟 Learn more about our event 'Advances in Our Understanding of ME and the Effects of Long Covid'
👨💼 Learn more about job accommodations
📽 Watch a promotional video with audio description for our event on post-infectious chronic illnesses with the Health and Disability Partnership at the Massachusetts Department of Public Health
💊 Learn more about a Vitamin B3 study for Long Covid symptoms
📒 View the MassME handbook on applying for disability
August 2021 Links:
📽 Watch a promotional video with audio description for our event on post-infectious chronic illnesses with the Health and Disability Partnership at the Massachusetts Department of Public Health
🧠 Learn more about a Fibromyalgia study at Spaulding Rehabilitation Hospital
📆 Read about the history of the Massachusetts ME/CFS & FM Association
🦠 Article: How Long COVID Is Forcing a Reckoning with the Neglect of Post-Infectious Chronic Illnesses
July 2021 Links:
👩⚕️ Nurse Patti's Blog Post #3: Links Between Long Covid and ME/CFS
June 2021 Links:
▶️ Watch Dr. Khosro Farhad's lecture on Fibromyalgia and Small Fiber Polyneuropathy
✈️ Travel tips for people with ME/CFS
🔬 Read about the role of mitochondrial dysfunction in ME/CFS
📑 Look at the CDC's new ME/CFS Resources
🏃♀️ Learn more about a Fibromylagia study at Spaulding Rehabilitation Hospital in Charlestown
👩⚕️ Nurse Patti's Blog Post #2 on mental health concerns for children with ME/CFS during lockdown
♿️Watch a panel about how interactive Zoom services make religious life accessible, featuring two MassME members
May 2021 Links:
👨💻 View video and materials from the second Interagency ME/CFS Working Group Meeting
👩⚕️ Read about Florence Nightingale's struggles with chronic illness
📜 Read about the history of ME/CFS and the condition's many names
👩⚕️ Nurse Patti's Inaugural Blog Post: The Role of School Nurses in Pediatric ME/CFS
April 2021 Links:
👨👩👧👦 Tips on how you can support friends and loved ones with ME/CFS
🧑🏿👩🏾👩🏽🦱👩🏿🦳 Read an article from Time Magazine about Black women who have become Long Covid advocates
📒 View the MassME handbook on applying for disability
👩⚕️ New Materials from the U.S. ME/CFS Clinician Coalition:
March 2021 Links:
😷 View resources for Long COVID/PASC patients
February 2021 Links:
📽 Watch our book event for The Puzzle Solver
January 2021 Links:
😷 View resources for Long COVID/PASC patients
Our ongoing programs
- Details
- Last Updated: 29 June 2018 29 June 2018
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.
More about us
Accomplishments of our Association
- Details
- Last Updated: 08 November 2015 08 November 2015
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.
More about us
History of the Association
- Details
- Last Updated: 29 June 2018 29 June 2018
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.
More about us
About Our Association
- Details
- Last Updated: 25 February 2024 25 February 2024
The Massachusetts ME/CFS and FM Association is a 501c3 non-profit registered in the state of Massachusetts.
Phone: 617-471-5559 | Tax ID: 04-3014644 | PO Box 690305 | Quincy, MA 02269-0305
MISSION
The Association supports people living with ME/CFS and their families by connecting them to supportive resources and each other, and by educating and advocating to expand the ME/CFS healthcare and social service infrastructure in Massachusetts.
Mutual Support
We are a “home base” for people affected by ME/CFS, providing opportunities for members to support one another and share knowledge, advice, information and hope.
Medical Education
We raise awareness of ME/CFS among healthcare professionals with the goal of increasing the pool of knowledgeable providers available to diagnose and treat individuals in Massachusetts.
Service Advocacy
We build relationships with support service agencies so that we can effectively advocate for the needs of our members and increase the service providers’ capacity, willingness and effectiveness in working with ME/CFS patients.
More about us
Accomplishments of our Association
How you can get involved