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MassME President, Susan Buckley |
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Sending very warm holiday wishes to the whole MassME community from a frosty Cambridge!
For forty years, MassME’s mission has been to bring people together to share their experience and learned expertise. I say it often: together, we are stronger. This is not just something I say, it is something I know. When my son was diagnosed with ME/CFS at the age of sixteen, I had two reactions: relief in finally having a medical explanation for his baffling and distressing symptoms; and dismay at the medical opinion that there was nothing to be done but wait and see if Jehan’s ship righted itself.
Like many of you, I went looking for more. MassME provided essential information about treatments, care, pacing, and later, the disability application process. But perhaps more importantly, the organization put my family in touch with wonderful people ― fellow travelers in the ME labyrinth ― who provided not just tips and advice but emotional support and a profound sense of community. As a MassME volunteer and then as a Board member, it has been an immense privilege to work with this group of remarkable people to help bring that sense of communal strength to others.
As we bring our celebration of forty years of service to a close, MassME continues to provide essential information, support, and advocacy. Since the launch of our redesigned website in May of this year, we have had 238,343 visitors. This monthly newsletter is sent to over 3600 people in 13 countries, and we held 50 support group meetings this year. Our YouTube channel as 115 videos with a total of 138,065 views. Our Peer to Peer program provides personalized connections for patients and caregivers where they can find compassion and community. We are committed to access ― we never turn anyone away from membership, services, or our events due to financial constraints.
Whether you have been a member for years or are just discovering our organization, I encourage you this holiday season to take comfort in the strength of our community.
With hope and solidarity, Susan |
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Join us! Become a member, volunteer with MassME, or give your time and expertise as a Board member. If you can, please remember MassME in your end-of-year giving, or consider other ways of charitable giving such as donating stocks or investment dividends, including MassME in your will or estate planning, or giving through a donor-advised fund or charitable trust. |
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Did you miss our special presentation marking 40 years of MassME history? Watch now! |
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We hear you and we are here for you. |
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Wellness Workshop |
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Each session features a different theme or activity followed by reflection, processing, and sharing.
*Due to professional guidelines, you must be a MA resident to attend.
The group meets monthly on Zoom, Tuesdays from 2:00pm - 3:30pm ET.
Registration is ongoing, join at any time.
January 13 |
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New England Meet Up Group
This group is for our younger Gen Z and Millennials to gather together and support each other.
*Due to professional guidelines, you must be a resident of MA, ME, NH, VT, RI, or CT to attend.
The group meets monthly on Zoom, Thursdays from 2:00pm - 3:30pm ET.
New members are always welcome!
December 16 January 27 |
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Previously recorded presentations, slides, and other resources from past events are available on the main Sunday Conversations Page. |
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Help us plan for 2026! The Sunday Conversations team welcomes new members. Contact us if you are interested or have any questions. We'll follow up with more information. |
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'The Lingering Shadow of Epidemics' |
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A recent paper by Akiko Iwasaki and colleagues in the journal Trends in Immunology presents a historical account of post-acute infection syndromes (PAIS) including ME/CFS outbreaks and Long COVID, and emphasizes the need for integrated approaches to understanding and treating these chronic illnesses. "Post-acute infection syndromes are a long-overlooked but important area of medicine, and long COVID represents a contemporary manifestation of a phenomenon that's been described for over a century," says co-author Christine Miller of Yale School of Medicine.
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Forthcoming Documentary Film: 'What Doesn't Kill You' |
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A feature-length documentary exploring the lives and battles of people with ME/CFS and Long COVID is expected to be released next year. "Through intimate interviews with patients, families, healthcare providers, and researchers, the film illuminates the daily reality of living with these chronic illnesses and exposes the ways in which medical and social misunderstanding have led to one of the most consequential public health failures of our time." More information about the film and a trailer are available on the 'What Doesn't Kill You' website. Please note that the trailer touches on sensitive topics regarding severe ME/CFS and death.
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Why Chronic Illness is Not a 'Journey' |
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Peter Swenson, a Yale professor emeritus with Long COVID, published a cogent and entertaining take-down of the increasingly prevalent use of the word 'journey' in the context of chronic illness. Swenson objects to the use of the 'treacly' word by well-meaning sympathisers, saying "people like me are jarred by the contradiction between the dreary experience of disease and the almost exclusively upbeat semantics of 'journey.'
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OMF Journal Club |
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OMF Journal Club The Open Medicine Foundation has launched a new series of presentations in which Danielle Meadows, VP of Research Programs, will talk through the main ideas of newly released research papers from OMF researchers. The first such presentation will be on December 17th at 4 pm ET, and will unpack the latest research paper from Dr Chris Armstrong, exploring the genetic basis for a possible increased sensitivity to cortisol in ME/CFS patients versus controls. Register for this webinar discussion here.
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Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. |
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Massachusetts ME/CFS & FM AssociationPO Box 690305Quincy, MA 02269
617-471-5559 contact@MassMECFS.org |
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© ::Massachusetts ME/CFS & FM Association::. All Rights Reserved |
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https://massme.monkeypod.io/mailcoach/webview/campaign/c6b03359-1763-4ebc-9868-7bd4fbb38b2f ::unsubscribeLink:: |