Special Event: Team MassME 5K |
Support MassME's vital programs. |
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Donate to Team MassME or to a Team member. Ask friends and family to do so in your name, or the name of someone you know.
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Recruit 5 donors, or raise $500, and receive a special gift.
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Now more than ever, MassME needs your support. |
All donations to our team and team members come directly to MassME.
Your support is critical in maintaining our resources, events, counseling, support groups, and advocacy.
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The Wellness Workshop is now an all-ages group!
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The group meets monthly on Thursdays at 6:00pm. Each session will feature a different theme or activity followed by reflection, processing, and sharing. *Due to professional guidelines, you must be a Massachusetts resident to attend.
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New England MeetUp group meets monthly on Zoom on Wednesdays at 2pm ET. This group is for our younger Gen Z and Millennials to gather together and support each other. Open to residents of MA, ME, NH, VT, RI, and CT.
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Stay Tuned for future Sunday Conversations events. Previously recorded presentations, slides, and other resources from past events are available on the main Sunday Conversations Page.
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ME Awareness Day Bridge Lighting |
May 12th is International ME Awareness Day, also known as World ME Day. |
International ME Awareness Day provides an opportunity to raise public awareness of ME/CFS and those living with the illness. MassME arranged for several bridges in Massachusetts to be illuminated in blue on the night of May 12. In Boston and Cambridge, the Zakim Bridge and the Longfellow Bridge were in beautiful blue lights. Also lit was the Burns Bridge in Worcester, and the Fore River Bridge in Quincy/Weymouth. Click here to watch our video montage!
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MassME Advocates Meet with MA Representative Decker |
Hayla Sluss (MassME Board Member), Leah Williams (MassME Treasurer, constituent) and Pamela Lipson (constituent) met with Representative Marjorie Decker at the State House on May 15th to discuss two House bills related to Long COVID that Rep. Decker has cosponsored with Representative Mindy Domb, An Act to improve access to health care for people with Long COVID (H2399) and An Act measuring the impact of Long COVID in the Commonwealth (H2400). Our request is that both bills be amended to explicitly include ME/CFS to ensure more accurate data and more equitable health care in MA. The bills are currently in committee. You can help advocate for these bills and the amendments by calling your representative in the MA State House, especially if you are in the districts of Rep. Decker or Rep. Domb. Find your representative here and information on making a call here.
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Newsworthy Events and Links |
Amy Mooney, Occupational Therapist, Speaks at National Conference about Working with ME Patients |
Amy Mooney, MS OTR/L, presented a workshop and a poster at the national American Occupational Therapy Association conference in Philadelphia in April about working with patients with ME and PEM. She had partial travel support from MassME. She reports that "Throughout the conference, I had meaningful conversations with occupational therapists, many of whom were seeking guidance for patients they found challenging to support, and others who had personal connections to ME/CFS and related conditions. It was incredibly rewarding to share care plans they could begin using right away. I look forward to continuing to mentor and support them as they integrate this work into their practice."
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Using Fitness Trackers to Manage Pacing |
ME International is continuing a program to send the Fitbit Inspire 3 Heart Rate Variability Monitor to people with ME/CFS to assist with pacing. They have a limited number of Fitbits to send out for free. If you would like to be considered for a monitor, fill out this form. If you would like to learn more about the use of HRV monitors, MEI has videos on their YouTube channel.
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Update from Dianna Cowern (Physics Girl) |
A new video from Dianna Cowern, known for her YouTube science communication as Physics Girl, covers her experience with severe Long COVID and ME/CFS and her recent partial recovery. Cowern also speaks movingly about her friendship with Tobias Schweikert, a severe ME/CFS patient. Cowern has been a remarkable advocate for the ME/CFS and Long COVID community, and the video draws on her ability to communicate effectively and with great impact. (The video is twelve minutes and contains mentions of suicide.)
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Body of Water: Performance and Conversation with Sara Nesson |
Mass ME member and storyteller Sara Nesson will be sharing her online show Body of Water on June 19, 2025, hosted by Bateman Horne Center. Body of Water follows Sara’s journey as a landlocked distance swimmer living with ME/CFS, struggling to find the way home. For more information or to register, click here.
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PolyBio's Spring Research Symposium |
PolyBio's Spring Research Symposium Videos are now available of PolyBio's Spring Symposium. Researchers supported by PolyBio's Long COVID Research Consortium and related complex chronic illness projects presented updates on their research on May 16. Presenters include Resia Pretorius (Stellenbosch University), Akiko Iwasaki (Yale), Michael Peluso (UCSD), Mike VanElzakker (Harvard Medical School), and David Putrino (Mount Sinai.)
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Mark Your Calendars: IACFS/ME Conference October 22-25 in Fort Lauderdale, FL |
Spotlight Update: Kim Moy |
“The caregiving journey often feels like navigating unfamiliar terrain – challenging, complex, and sometimes lonely. But I've learned that with the right tools, support system, and community, we can find strength, beauty, and moments of joy along the way.” |
Kim was featured as a Spotlight in our January 2024 Newsletter but has since added more resources to Caregivers Wisdom. You can read her first Spotlight here. |
I'm Kim Moy and my ME/CFS care partner journey began about 20 years ago. When we first met, my husband had mild ME/CFS. Then it became severe about a dozen years ago, forcing him to spend most of his day in bed. While caring for him, I've raised our two children and worked in demanding corporate roles. Simultaneously, I also shared caregiving duties for my parents during their final years. My mother had Alzheimer's and died of COVID, and my father passed shortly after her. Through these experiences, I've intimately understood how caregivers struggle with overwhelming responsibilities while navigating complex medical systems with little guidance or support. It’s even tougher when we’re dealing with debilitating illnesses that aren’t well understood by doctors. What began as a search for connection led me to create and lead a support group that has met monthly for over six years via Zoom, bringing together caregivers of loved ones with ME/CFS, Long COVID, and related illnesses. Read the rest of Kim's story here.
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Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. |
Massachusetts ME/CFS & FM Association PO Box 690305 Quincy, MA 02269
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