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πŸ“¬  Sign up for our newsletter to learn more about Association activities

 

πŸ“„  Read the November newsletter

 

πŸ‘‹  Become a member of the Massachusetts ME/CFS & FM Association

 

🀝  Explore the patient services we offer

 

πŸ’΅  Support the Massachusetts ME/CFS & FM Association

 

πŸŽ₯  Visit the Massachusetts ME/CFS & FM Association YouTube channel 

 

😷  View resources for Long COVID/PASC patients

 

December 2021 Links:

 

πŸŽ₯  Watch the videos from our event: 'Advances in Our Understanding of ME/CFS and the Effects of Long Covid'

 

πŸ“° Read the article from The Atlantic: 'Even Health Care Workers With Long COVID Are Being Dismissed'

 

 

November 2021 Links:

 

πŸ‘©β€πŸ’» Learn more about our new monthly discussion group and register

 

πŸ“ž If you live in Massachusetts and would like to receive a physician referral, contact us

 

πŸŽ₯  Watch the videos from our event: 'Advances in Our Understanding of ME/CFS and the Effects of Long Covid'

 

πŸ“’ View the MassME handbook on applying for disability

 

πŸ“– Read the 1990 Newsweek article on ME/CFS

 

πŸ’» Connect with us on LinkedIn!

 

πŸ”¬ 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'

 

πŸŽ₯ 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)

 

πŸ’» Read Cort Johnson's post about our upcoming annual meeting on Health Rising

 

πŸ‘©β€πŸ’Ό Read an article about Chronically Capable, a platform connecting people with chronic illness and disability with employment opportunities

 

 

September 2021 Links:

 

🌟 Learn more about our event 'Advances in Our Understanding of ME and the Effects of Long Covid'

 

πŸ‘¨β€πŸ’Ό Learn more about job accommodations

 

πŸ“¬  Read David Tuller's letter to the chief executive of NICE urging them to publish their new ME/CFS guidelines without delay

 

✏️  Sign the #CodeUsCountUsCureUs petition urging The U.S. National Center for Health Statistics to fix the coding for ME/CFS in the U.S. International Classification of Diseases

 

πŸ“½  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

 

πŸ’Š Learn more about a Vitamin B3 study for Long Covid symptoms

 

πŸ“– Read the new clinical guidelines for diagnosis and management of ME/CFS from the US ME/CFS Clinician Coalition in the Mayo Clinic Proceedings

 

πŸ“’ View the MassME handbook on applying for disability

 

 

August 2021 Links:

 

πŸ₯  Register for our event on post-infectious chronic illnesses with the Health and Disability Partnership at the Massachusetts Department of Public Health

 

πŸ“½  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

 

πŸ“”  Learn more about the proposal to add ME/CFS to the neurological chapter of the International Classification of Diseases (ICD-10-CM)

 

🧠  Learn more about a Fibromyalgia study at Spaulding Rehabilitation Hospital 

  

πŸ“–  Read an article on severe ME/CFS, profiling three Association members, published in the journal 'Healthcare' 

 

πŸ“† 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:

 

πŸ‘¨β€βš•οΈ Read Dr. Anthony Komaroff's short essay: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering is Multiplied"

 

πŸ‘©β€βš•οΈ 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

 

πŸ”¬ Read about the role of mitochondrial dysfunction in ME/CFS

 

πŸ“‘ Look at the CDC's new ME/CFS Resources

 

πŸƒβ€β™€οΈ Learn more about a Fibromylagia study at Spaulding Rehabilitation Hospital in Charlestown

 

πŸ‘©β€βš•οΈ 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

 

πŸ—ž Read an article from The Guardian about how long Covid research has the potential to help people with ME/CFS

 

 

 May 2021 Links:

 

πŸ‘¨β€πŸ’» View video and materials from the second Interagency ME/CFS Working Group Meeting

 

πŸ“° Read Rivka Solomon's Washington Post essay about how COVID has led to increased accessiblity for people with ME/CFS

 

πŸ‘©β€βš•οΈ Read about Florence Nightingale's struggles with chronic illness

 

πŸ“œ Read about the history of ME/CFS and the condition's many names

 

πŸ‘©β€βš•οΈ Nurse Patti's Inaugural Blog Post: The Role of School Nurses in Pediatric ME/CFS

 

 

April 2021 Links:

 

πŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘¦  Tips on how you can support friends and loved ones with ME/CFS

 

πŸ§‘πŸΏπŸ‘©πŸΎπŸ‘©πŸ½β€πŸ¦±πŸ‘©πŸΏβ€πŸ¦³ Read an article from Time Magazine about Black Women who have become Long Covid advocates

 

πŸ“’ View the MassME handbook on applying for disability

 

πŸ‘©β€βš•οΈ New Materials from the U.S. ME/CFS Clinician Coalition:

 

πŸ“Ί Watch MassME's Rivka Solomon talk about advocating for people with ME/CFS and Long COVID on the PBS NewsHour

 

 

March 2021 Links:

 

πŸ“–  Read an article on severe ME/CFS, profiling three Association members, published in the journal 'Healthcare.' 

 

πŸ§ͺ Read about the new NIH research grant to awarded to UMass Medical School researchers Liisa Selin and Anna Gil

 

 

February 2021 Links:

 

 πŸ“½ Watch our book event for The Puzzle Solver

 

 

January 2021 Links:

 

😷  View resources for Long COVID/PASC patients

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.

More about us

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 Associationsβ€”regional, national and international.

 

More about us

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:

β€œWhen 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)β€”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 1985β€”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 campaignsβ€”giving voice to those with CFIDS & FM."

Legally named Massachusetts C. F. I. D. S. Association, the organization has updated its β€œdoing business as” name periodically, adding Fibromyalgia (β€œ& FM”) in the early 1990s, changing β€œCFIDS” to β€œCFIDS/ME” in 2008, and β€œCFIDS/ME” to β€œME/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.

More about us

Our accomplishments

Our ongoing programs

Patient services