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Annual Meeting 2026 Being Seen |
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How can we make our community’s needs for accommodation more visible? |
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MassME’s 2026 Annual Meeting explored two programs that empower people with ME/CFS, Long COVID, and other IACCIs to own, name, and obtain the accommodations we need.
We heard from two speakers who shared different ways that Being Seen can improve our lives.
Therese Russo, Advocacy Manager at #MEAction, discussed #MEAction's Frail & Furious campaign, which is organizing people across states to advocate for Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs). She discussed the “medical frailty” exemption to new Medicaid community engagement requirements, including why it is an important lifeline for people with disabling chronic illnesses who may be subject to these requirements.
Lynn Smith, U.S. Regional Director of Hidden Disabilities Sunflower, explained how this program helps people with non-visible disabilities discreetly signal that they may need additional support, patience, understanding, or time—without having to disclose their diagnosis. She highlighted the program’s global reach, including use in more than 90 countries and over 350 airports, and explained how participating organizations train employees to recognize the Sunflower and respond appropriately.
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Sunday Conversations When Chronic Illness Takes Over Your Life: How to Start Living Again Sunday, November 15, 2026 4:00pm ET on Zoom |
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Drawing on her 20+ years as an RN, and her own chronic illness experience, Ms. Wolf will reflect on how illness can gradually begin occupying not only our bodies, but our thoughts, routines, identity, and sense of possibility.
Join us in exploring practical ways we can begin creating more mental and emotional space for living again without ignoring symptoms or replacing necessary medical care.
Sunday Conversations is a free program and all are welcome!
This program will be recorded for later viewing. |
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Registration is ongoing for our Gen Z/Millenial Meet Up Group |
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The group meets monthly on Zoom, Tuesdays from 3:00pm - 4:30pm ET
November 17 December 15 |
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We welcome young adults from the entire Northeast region. |
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Ruling on Medicaid’s ‘medical frailty’ exemption |
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Part of our Annual Meeting focused on the potential impact of the new work and reporting requirements for people with expansion Medicaid, and particularly for those who might be eligible for the ‘medical frailty’ exemption. Just a few days later, a federal court halted implementation of the of the administration’s definition of medical frailty. The states that sued will now not be required to enforce the medical frailty provisions as written, and will have a six-month grace period to implement the rest of the rule.
While this is good news for many in our community, the administration will likely appeal the decision and it may be overruled. The decision applies only to the 25 plaintiff states: Massachusetts, California, New Jersey, Arizona, Colorado, Connecticut, Delaware, Hawai’i, Illinois, Kentucky, Maine, Maryland, Michigan, Minnesota, Nevada, New Mexico, New York, North Carolina, Oregon, Pennsylvania, Rhode Island, Vermont, Virginia, Washington, and Wisconsin, and to the District of Columbia.
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Pfizer Webinar on Long COVID |
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Pfizer's Antiviral US Medical Affairs team is bringing together healthcare experts, patient advocates, researchers, and people with lived experience for a virtual discussion exploring the ongoing challenges facing individuals and communities affected by COVID-19.
Join Solve M.E. President Emily Taylor, Dr. Adeel Butt, Dr. Zeest Khan, and Ezra Spier for a webinar on Tuesday, November 17 from 6:00 to 7:30pm ET. Register here.
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COVID Recovery Center Speaker Series |
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The COVID Recovery Center at Mass General Brigham is running an informational speaker series on all aspects of COVID and Long COVID. The next seminar will be presented by Julie Sullivan, Program Manager, on MassHealth 2027: What You Need to Know.
The seminar is on Zoom on Tuesday, November 17 at 4:00pm ET. No need to register in advance. Just join the Zoom call here.
The COVID Recovery Center also has an extensive repository of information and resources that you can access here: Long COVID Resources. If you would like to receive their monthly newsletter, please contact Julie at [email protected].
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In Case You Missed It: November RECOVER-TLC Workshop |
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The Sick Times has provided an excellent blog covering the presentations at the two-day meeting in Bethesda, MD. Recordings of the workshop will be posted here in the next month.
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Nancy Klimas talk now available |
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Dr. Nancy Klimas, Nova Southeastern University, delivered a groundbreaking talk at the CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call on on September 18 about "How Progress in Long COVID is helping us understand ME/CFS."
If you missed the event, you can now watch the video of the presentation, read the transcript, and view the slides.
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Interview with Dianna Cowern (Physics Girl) |
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In an interview with KPBS (San Diego), prominent YouTuber Dianna Cowern describes her struggle with severe Long COVID and ME/CFS. Back to 30-40% of her previous capacity, Cowern posted her first Physics Girl video since 2022.
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PACE to the Capital: #MEAction Starts 2027 #MillionsMissing Campaign |
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#MEAction is starting their 2027 #MillionsMissing Campaign now with activities to raise awareness and push for funding the NIH's ME/CFS Research Roadmap. The campaign will culminate in a powerful display of 200 empty beds at the US Capitol on May 12, 2027.
You can register here to join Team Home or Team Hill.
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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 390459Cambridge, MA 02139-0459
617-471-5559 [email protected] |
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