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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’΅  Support the Massachusetts ME/CFS & FM Association

 

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

 

πŸ‘¨β€βš•οΈ  Refer a Doctor

 

March Links:

πŸ™‹ Massachusetts Residents, Call to action: Fill out our Advocacy Contact Form

πŸ“½οΈ Watch Now!  Sunday Conversations - β€œDysautonomias 101: More Than Just POTS”, Sunday, March 17, 2024, 4 p.m. Eastern Time

πŸ‘₯ Register for the Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Winter 2024 Session

  πŸ“„ Read the March Newsletter

 

February Links:

πŸ‘₯ Register for Sunday Conversations - Small Group Discussions "Living with co-morbidities or other serious illnesses" Sunday, February 18, 2024, 4 p.m. Eastern Time

πŸ‘₯ Register for the Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Winter 2024 Session

  πŸ“„ Read the Februaury Newsletter

 

January 2024 Links: 

πŸ‘₯ Register for Sunday Conversations "It's Not 'All In Your Head' Multi-Modal Healing with Judy Tsafrir, 1/21/24 @ 4pm ETRegister for Sunday Conversations "It's Not 'All In Your Head' Multi-Modal Healing with Judy Tsafrir, 1/21/24 @ 4pm ET

πŸ‘₯ Register for the Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Winter 2024 Session

  πŸ“„ Read the January Newsletter

 

December 2023 Links: 

  πŸ“„ Read the December Newsletter

 

November 2023 Links:

πŸ“½οΈ Watch Now!  "MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed Yong"Watch Now!  "MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed Yong"

  πŸ“„  Read the November Newsletter

πŸ“½οΈWatch Now! Sunday Conversations "What Sociology and the Illness Narratives Can Teach Us About Living with Chronic Illness"

 

October 2023 Links: 

  πŸ“„  Read the October Newsletter

πŸ‘₯ Register for MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed Yong"

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Fall Session" 

 

September 2023 Links: 

πŸ‘₯ Register for MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed YongRegister for MassME Annual Event: "ME/CFS: Changing the Narrative" featuring Ed Yong

  πŸ“„  Read the September Newsletter

πŸ“° Read the Boston Globe article catching up with Massachusetts Long Haulers

✏️ Take the 2023 Massachusetts Dept of Public Health Community Health Equity Survey 

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Fall Session" 

 

August 2023 Links:

 πŸ§ͺ Learn more about the NIH ME/CFS Research Roadmap webinarLearn more about the NIH ME/CFS Research Roadmap webinar

πŸ‘₯ Register for Sunday Conversations: Living with Chronic Illness - August 20, 2023     

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Summer Session" 

  πŸ“„    Read the August Newsletter

 

July 2023 Links: 

  πŸ“„  Read the July Newsletter

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Summer Session" 

πŸ“½οΈ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: 

πŸ‘₯ Register for "ZOOM through 40 years of ME/CFS with MassME!" Sunday, June 18, 2023, 4 p.m. Eastern Time 

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Summer Session"

 

  πŸ“„  Read the June Newsletter

 

 

May 2023 Links:

πŸ“½οΈ Watch the video from our Sunday Conversation on 'Using wearable technology to measure and manage Long COVID and ME/CFS" with Harry Leeming from #VisibleHealth

 

  πŸ“„  Read the May Newsletter

 

April 2023 Links:

πŸ‘₯ Register for "What Every Provider Should Know About ME/CFS (and how their patients can help them learn)" Sunday, April 16, 2023, 4 p.m. Eastern Time

 

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Spring Session"

 

 πŸ“„  Read the April Newsletter 

 

 March 2023 Links:

πŸ‘₯ Register for "The Broken Mishkan: Performance and Community Conversation with Sara Nesson", Sunday, March 19, 2023, 4 p.m. EST

 

πŸ‘₯ Register for "Young Adult Support Group for those with ME/CFS, FM, Lyme, Long Covid, and Chronic Illness - Spring Session"

 

 πŸ“„  Read the March Newsletter

 

February 2023 Links:

 

πŸ“½οΈ Watch the video from our Sunday Conversation on 'Pacing for PEM: An OT and PT perspective on what it is and how you can use pacing strategies in your daily life"

 

πŸ“° Read about how Long Covid's affects the ability of patients to work in the New York Times

 

πŸ‘₯ Register for our young adult support groups on February 7th and February 18th

 

 πŸ“„  Read the Februrary newsletter

 

January 2023 Links:

 

πŸ“½οΈ 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

 

πŸ§‘β€βš•οΈ Recommend a healthcare provider to MassME

 

πŸ“°  Read an article about the practice of pacing in the Boston Globe

 

πŸ“„ Read 'Long COVID: major findings, mechanisms, and recommendations' from Nature Reviews Microbiology

 

πŸ“š Purchase Ryan Prior's book 'The Long Haul' from Buttonwood Books and Toys for a 15% discount using the code 'BOOK CLUB'

  

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

 

πŸ“ƒ Read an excerpt from Ryan Prior's new book in Newsweek magazine

 

 

December 2022 Links:

 

πŸ’΅  Support our work with a year-end donation!

 

πŸ‘¨β€βš•οΈ  Watch Dr. Anthony Komaroff's talk on ME/CFS and Long Covid from our 2022 Annual Meeting

 

πŸ“– 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

 

πŸ“„ Read our updated resources on applying for Social Security Disability

 

πŸ™‹ Learn more about volunteer opportunities with MassME!

 

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

 

πŸ“½  Watch Dr. Khosro Farhad's talk on Small Fiber Polyneuropathy in Fibromyalgia 

 

🦠 Read Time Magazine's article on post-viral illness

 

βš•οΈ Read about a new program from the CDC Foundation to create partnerships to address chronic conditions caused by infections

 

πŸ‘¨β€βš•οΈ  Watch Dr. Anthony Komaroff address questions from the audience during our 2022 Annual Meeting

 

πŸ—ž  Read an article about about Brain Fog in the Washington Post

 

πŸ“°  Read about racial disparities in receiving care for ME/CFS and Long Covid in the Boston Globe

 

 

November 2022 Links:

 

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

 

πŸ”¬ Read about grants awarded by the Patient-Led Research collaborative to nine projects researching ME/CFS, Long Covid, dysautonomia, and related conditions

 

πŸ’° Learn more about becoming the MassME treasurer and apply!

 

πŸ“Ί Watch ABC News Live's segment on Long Covid

 

πŸŽ™οΈ Listen to an interview with Ryan Prior on #MEAction's Chronically Complex podcast

 

πŸ“– Read about Ryan Prior's new book: 'The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever'

 

πŸ—‚οΈ Read about new rules regarding free, digital access to your health records

 

πŸ’» Read a write-up on our annual meeting from Health Rising by Cort Johnson

 

πŸ“½ Watch the videos from our 2022 Annual Meeting on the Emerging Similarities of ME/CFS and Long Covid and Why It Matters featuring Dr. Anthony Komaroff

 

πŸ”¬  Read Yale School of Medicine's article, featuring Rivka Solomon, on how Long Covid can help researchers understand ME/CFS

 

 

October 2022 Links:

 

πŸ“°  Read an op-ed in the Boston Globe article on taking action against Long Covid and other post infectious illlnesses

 

πŸ“½ Watch a video on how Traditional Chinese Medicine can help those with ME/CFS and Long Covid

 

πŸ—ž Read the New York Times op-ed on how MillionsMissing protesters suffer from PEM in the wake of their action

 

πŸ“½ Watch a video on how ME/CFS and Long Covid are viewed in Traditional Chinese Medicine

 

πŸ“•  Read about how mental health practitioners can help people with Long Covid using lessons learned from treating those with ME/CFS

 

πŸ“°  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

 

πŸ“½ Watch the videos from our September Sunday conversation on Traditional Chinese Medicine

 

βœ‹ Learn about volunteer opportunities with MassME

 

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

 

 

September 2022 Links:

 

πŸ—ž Read Ed Yong's article on ME/CFS and Long Covid in The Atlantic

 

πŸ’» See Senator Markey's post about Ed Yong's article on ME/CFS and Long Covid in The Atlantic

 

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

 

πŸŒ… Learn more about the new 5-session course "Coping with ME/CFS," and register

 

πŸ› Read coverage of the #MillionsMissing protest in Washington, D.C. from The Hill

 

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—Ί Read the MassME strategic plan

 

πŸ“° Read Dr. Wes Ely's Boston Globe opinion piece about the effects of Long Covid

 

πŸ“½  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:

 

πŸ“° Read the New York Times editorial: 'If You’re Suffering After Being Sick With Covid, It’s Not Just in Your Head'

 

βš•οΈ  Read Health Rising's dive into Dr. Ian Lipkin's latest research paper

 

πŸ“½  Watch Dr. Ian Lipkin's Talk: 'An Interim Report on Solving the Mysteries of ME/CFS'

 

πŸ”¬ Read an interview with Dr. Avindra Nath about research into Long Covid and ME/CFS

 

πŸ™‹ Express interest in joining the MassME Board

 

🦸 Learn more about joining the MassME Board

 

 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'

 

πŸ“½ 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

 

πŸ“† 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

 

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

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

 

About Our Association

 

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 β€œhome 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

2024 Board of Directors

Strategic Plan 2020

Accomplishments of our Association

History of the Association

Our ongoing programs

Patient services

Bylaws

Anti-Discrimination Policy

Conflict of Interest Policy

How you can get involved

Donate

Volunteer

Join the Association

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