2026 Annual Meeting: "Being Seen"

Annual Meeting 2026

Being Seen

Sunday, October 18, 2026
1:00 PM - 3:00 PM EST on Zoom

How can we make our community’s needs for accommodation more visible? MassME’s 2026 Annual Meeting will explore two programs that empower people with ME/CFS, Long COVID, and other IACCIs to own, name, and obtain the accommodations we need.

Join us to hear from two speakers who will share different ways that Being Seen can improve our lives.

Therese Russo, Advocacy Manager at #MEAction, will discuss #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 will discuss 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, will explain 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’ll highlight the program’s global reach, including use in more than 90 countries and over 350 airports, and explain how participating organizations train employees to recognize the Sunflower and respond appropriately.

Full details here.

This program will be recorded for later viewing.

Click Here to Register

MassME Survey

MassME is entering an important moment in our organization, and we want to ensure our future direction reflects what matters most to our community. We are looking at the big picture: the needs of our community, the changing landscape of ME/CFS, Long COVID, and related illnesses, and the services we offer.

This short survey will take only a few minutes. Your responses will help us understand how MassME can plan thoughtfully for the years ahead. Your voice will help shape the future of this organization.

We have two surveys, one for members, and the other for newsletter recipients who are not currently members. We want to hear from all of you! Please respond by October 16, 2026.

Member Survey

Newsletter Survey

Gen Z & Millenial Meet Up Group

Registration is ongoing for our Gen Z/Millenial Meet Up Group

The group meets monthly on Zoom, Tuesdays from 3:00pm - 4:30pm ET

October 13

November 17

December 15

We welcome young adults from the entire Northeast region.
MA, ME, NH, VT, RI, CT, NY, NJ, and PA!

Click Here to Register

Recording Available for September Sunday Conversations

Click Here for Meeting Resources and Links

Team MassME Runs, Walks, and Rolls for Awareness

The weather was perfect, the location was lovely, and our team was awesome! This is the third year MassME has participated in this event, and for the third year in a row we were one of the strongest fundraising teams.

Thank you to all our team members and to all who donated to support MassME's essential programs and services.

Together, we are stronger!

Newsworthy Events and Links

MA Wants to Hear From You about Health Equity

If you are a resident of Massachusetts, the Department of Public Health would like to hear from you about health equity in your community. The survey will gather information about your experiences with accessing health care, meeting basic needs, education, mental health, and other topics. The data will be used to create programs and policies that improve health and reduce inequities. Take the survey here or learn more here.

Federal Changes to Eligibility for MassHealth

The federal government is mandating changes to eligibility for MassHealth that will take effect in 2027, including work/education requirements. This webpage has information about the changes, including exemptions. If you are a MassHealth member, MassHealth will contact you directly if your eligibility is changing (look for a blue envelope in the mail). Please make sure that MassHealth has your current contact information. You can update your information by calling the MassHealth Customer Service Center at 800-841-2900. And please join us at our Annual Meeting where Therese Russo from #MEAction will discuss her work with state leaders to have the medical frailty exemption cover ME/CFS, Long COVID and other infection-associated chronic conditions. Register here.

Every Vote Counts: Midterm Elections Tuesday, Nov 3

Please vote in the midterm elections on Tuesday, November 3. The following information is for Massachusestts residents. You can check your registration status and find your voting location here. You can register to vote until October 24 either online, by mail or in person. Any registered voter in MA can request a mail-in ballot from your local election office (deadline October 27 at 5:00 PM). Early in-person voting starts October 17 and ends October 30. Contact your local election office for locations and times.

INIM 2026 Patient Conference

Join the Institute for Neuro-Immune Medicine (INIM) at Nova Southeastern University for their annual patient conference on Friday, October 9 from 12:30 to 4:00 PM ET in person (Fort Lauderdale, FL) or on Zoom. Learn about recent advances in translating the results of clinical trials into safe clinical practices through presentations, a panel discussion, and a question and answer session. Register here.

RECOVER-TLC Two Day Workshop

NIH's clinical trials program for Long COVID, RECOVER-TLC (Researching COVID to Enhance Recovery-Treating Long COVID) will host a two-day workshop on Wednesday, November 4 and Thursday, November 5 to provide updates and discuss opportunities via plenary speakers, panel discussions, and networking. Attend in person in Bethesda, Maryland or join by Zoom. Register here.