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πŸ“§ Contact us!

 

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

 

🀝  Explore the patient services we offer

 

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

 

πŸ“„  Read the August newsletter

  

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

 

▢️ Visit the Massachusetts ME/CFS & FM Association YouTube channel  

 

 

August 2022 Links:

 

🩺 Learn more about the CNE course about ME/CFS for school nurses and register

 

πŸ– Browse our back to school resources for educators and school nurses

 

πŸ“½ Watch a panel discussion of the film 'Unrest' filmed in 2018 at the Mass Dept of Public Health

 

πŸ§‘β€βš•οΈ Read about how ME/CFS is gaining new respect as researchers realize its similarities to Long Covid

 

πŸ‘₯ 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

 

βš“οΈ Learn more about why our logo is the Sankaty Head Lighthouse 

 

♿️ Read the Proclamation on the Anniversary of the Americans with Disabilities Act

 

πŸ“½ Watch Dr. Donna Felstenstein give an overview of the clinical aspects of ME/CFS

 

 πŸ“‘ Read about testimony given to the COVID Oversight Committee from Long Covid advocates, as well as health and economic experts

 

πŸ› Watch the COVID Oversight Committee's hearing on 'Understanding and Addressing Long Covid and its Consequences'

 

β˜€οΈ Watch the CBS Sunday morning segment about Long Covid

 

πŸ“½ Watch Dr. Vera answer questions about whole person health approach to ME/CFS and Long Covid

 

🎨 Read the Boston Globe review of the 'Invisible Disabilities' exhibit at the Arthaus Gallery in Allston

 

 

June 2022 Links:

 

πŸ“½ 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

 

πŸ“½ Watch the videos from our June Sunday conversation about the whole person health approach to ME/CFS and Long Covid

 

πŸ“½  Watch the Empower M.E. Roundtable event with state advocates from the Solve ME/CFS Initiative

 

πŸ“– Read about the update to medical coding of ME/CFS in the United States

 

πŸ“’ Watch #MEAction's #MillionsMissing 2022 Global Event 

 

πŸ“½ Watch the Q&A from our recent Sunday Conversation on fibromyalgia

 

πŸ³οΈβ€πŸŒˆ 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

 

πŸ“½ Watch a video of two patients describing their experiences with Fibromyalgia

 

 

 May 2022 Links:

 

πŸ“½ Watch a video of Dr. Paul Monach providing an overview of Fibromyalgia

 

πŸ“½ Watch the videos from our May Sunday conversation on Fibromyalgia

 

πŸ‘©β€βš•οΈ Watch Dr. Alba Azola provide a physician's perspective on building a positive doctor-patient relationship

 

πŸ—ž  Read Leah Stagnone's article about ME/CFS and Long Covid awareness from the Concord Monitor

 

 

April 2022 Links:

 

πŸ“½ Watch the videos from our April Sunday Conversation: "Working With Your Healthcare Provider"

 

πŸ₯ Read an article about Long Covid and gaslighting by physicians

 

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

 

πŸ“ˆ Read an article re-calculating the impact of ME/CFS in the wake of Long Covid

 

🍷 See Rivka Solomon quoted in an article about medically vulnerable people unable to participate in Passover celebrations in-person

 

πŸ“½  Watch the Q&A from our Sunday Conversation about functional medicine

 

🏠 Learn more about obtaining assistance for housing and other essential needs such as food and heat in Massachusetts

 

πŸ“‘ Read an announcement on a new comprehensive government effort to address Long Covid

 

πŸ‘¨β€βš•οΈ Watch Dr. Lenhardt speak about the role functional medicine can play in treating people with complex chronic illness

 

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

 

 

March 2022 Links:

 

πŸ“½ Watch Sharon, a person with ME/CFS, describe how functional medicine has helped her and her family in our March Sunday Conversation

 

πŸ“œ Read about Tim Kaine's recent discussion of the CARE for Long Covid Act

 

πŸ“½ Watch the videos from our March Sunday Conversation: "A Functional Medicine Approach to Complex Chronic Illnesses"

 

πŸ›  Learn more about meeting with members of Congress during Advocacy Month in May

 

πŸ› InformaciΓ³n en espaΓ±ol sobre el Mes de la AbogacΓ­a 2022 en Mayo

 

πŸ“ƒ Read a essay on being a mother with chronic illness 

 

πŸ“½ Watch MassME member Bob Robitaille speak about his family's experience with applying for disability

 

πŸ“°  Read the Boston Globe's article about how people from BIPOC communities are less likely to receive Long Covid care

 

🎨 Learn more about our new art therapy group

 

πŸ“½ Watch Ron Beluso, Esq speak about an attorney's role in the process of applying for disability

 

πŸ“„ Read Time Magazine's article about solving the puzzle of Long Covid

 

πŸ₯  Read about the Greater Boston Recovery Cohort, a collaboration of six Boston-area hospitals studying Long Covid 

 

πŸ“°  Read the Boston Globe review of 'The Invisible Kingdom: Reimagining Chronic Illness"

 

πŸ“½ Watch Ken Casanova's Talk on Applying for Disability

 

 

 February 2022 Links:

 

 

πŸ“½ Watch the videos from our February Sunday Conversation: "Applying for Social Security Benefits if You Have ME/CFS or Fibromyalgia"

 

πŸ’»  View additional resources and links from our February Sunday Conversation on applying for Social Security Disability benefits

 

πŸ“± Follow us on Twitter!

 

πŸ—ž Read the New York Times article about exercise intolerance in ME/CFS and Long Covid

 

πŸš΄β€β™‚οΈ Watch Dr. David Systrom's talk on exercise intolerance in ME/CFS 

 

 πŸ“½ Watch our February 2021 book event for The Puzzle Solver

 

πŸ‘¨β€πŸ’Ό Watch Dr. Ken Fridman discuss post-viral illnesses and the role that OT's and PT's can play in its management

 

⭐️ Recommend a health care provider to us

 

πŸ™  Read an appeal for health care provider recommendations from our Patient Care Coordinator

 

πŸ“° Read an article about Dr. Ron Davis in the Times: "Could this scientist have the answer to long Covid?"

 

πŸ‘©β€βš•οΈ Watch rehabilitation physician Dr. Alba Azola reflect on she has learned about ME/CFS

 

✑️  Read Rivka Solomon's interview with JewishBoston.com for Jewish Disability, Awareness, and Inclusion Month

 

πŸ“”  Watch or read an interview with #MEAction's Jaime Seltzer on ME/CFS and Long Covid in Infection Control Today

 

 

January 2022 Links:

 

πŸ‘¨β€πŸ’»  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

 

πŸ’™  Read our tribute to Dr. Ron Tompkins 

 

🧠  Learn about Dr. Michael VanElzakker's study on neuroinflammation in Long Covid

 

πŸ“½ Watch the videos from our January Sunday Conversation: "Physical and Occupational Therapy for ME/CFS and Similar Chronic Illnesses"

 

πŸ“° Read Jennie Spotila's opinion piece in the Philadelphia Inquirer: "I Have a Chronic Illness.  During COVID, isn't My Life Worth Protecting?"

 

πŸ‘¨β€βš•οΈ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS

 

πŸ’¬  Learn about 'Sunday Conversations,' our new monthly speaker series

 

πŸ“„  Read Cort Johnson's summary of our October annual meeting on his Health Rising blog

 

πŸšΆβ€β™‚οΈ Learn more about the January edition of Sunday Conversations: "Physical and Occupational Therapy for ME/CFS and Similar Chronic Illnesses"

 

πŸ“· Read about authentic stock photos representing people with ME/CFS from the German Association for ME/CFS

 

πŸ‘©β€πŸ’» Watch an interview with MassME member Rivka Solomon on ME/CFS Alert

 

 

December 2021 Links:

 

πŸ“’ Read a summary of the most interesting ME/CFS research of 2021 by the ME/CFS Skeptic Michiel Tack

 

πŸ“½ Watch ''The Tangled Story of ME/CFS,' the newest film from Dialogues for ME/CFS

 

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

 

🎧  Listen to an NPR program discussing Long Covid as well as ME/CFS 

 

πŸ’‰ Learn about vaccination opportunities in Massachusetts for people with disabilities

 

πŸ‘¨β€βš•οΈ Watch Dr. Anthony Komaroff's grand rounds presentation on ME/CFS

 

πŸ‘©πŸΏβ€πŸŽ¨ Read about Ijeoma Ogwuegbu, a Nigerian artist with fibromyalgia

 

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

 

πŸ“” Read our primer for people who are newly diagnosed with ME/CFS

 

πŸ‘₯  Read about how people can be a true and helpful friends to someone with ME/CFS

 

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“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

 

😷  View resources for Long COVID/PASC patients

 

 

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

Courtesy and Reduced Fee Memberships

Our primary goal as an Association is to serve those with ME/CFS. No one interested in becoming a member will be excluded because of financial hardship.

If the $25 annual membership contribution constitutes a significant hardship, we offer Courtesy (free) and Reduced Fee ("Pay What You Can") membership.

For a Courtesy or Reduced Fee 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. For a Courtesy membership: You may ignore the "Invoice" which will arrive automatically via email.
  3. For a Reduced Fee membership: Follow the steps above and then Donate what you are able to afford.

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