- Last Updated: 17 November 2021 17 November 2021
In this month's newsletter:
- Video Available of MassME Annual Meeting with NIH Researchers
- E-book by Elizabeth Glixman
- ME/CFS Treatment Trials Coming Soon
- Our Friends in the News
- Mark Your Calendar
- More Videos
- Support Groups
Video Available: MassME Annual Meeting
We have posted the video of our 2021 Annual Meeting, Advances in our Understanding of ME/CFS and the Effects of Long COVID, featuring presentations from NIH-funded ME/CFS researchers, including Vicky Whittemore (NIH), Avi Nath (NIH), Ian Lipkin (Columbia), Derya Unutmaz (Jackson Laboratory), Maureen Hanson (Cornell), and Cindy Bateman (Bateman-Horne Center). The event drew 560 registrants from 20 countries. If you missed it live, watch it here. The 3 and a half hour event is broken into 12 segments within a video playlist to enable targeted viewing by speaker. Make sure to watch the Q&A section, as well as the 10 minute breaks which are full of relaxing music and interesting facts about ME/CFS.
E-Book by Elizabeth Glixman
We are pleased to announce the world premier of Then: A Conversation With Myself, an e-book by Elizabeth Glixman. For Elizabeth, being diagnosed with CFS brought up intense feelings and questions about life. Then was a way to communicate her experience to herself and others. We are honored to have been asked by Elizabeth to premier this powerful work of art and prose.
Our Friends in the News
Liisa Selin, MD, PhD, and Anna Gil, PhD, at UMass Medical, are featured in the UMass Medical News for their work on the links between ME/CFS and viral infections. They recently won a large NIH grant to continue this research. MassME is pleased to have supported this research team over the years, including notifying our newsletter recipients that these innovative researchers had received a Solve ME Ramsay Award and needed blood donations. People responded enthusiastically, allowing Selin and Gil to move this necessary research forward. Additionally, they met with our Research Club and shared their cutting-edge findings. A video excerpt of that meeting can be found here and the research is summarized on this poster.
Mark Your Calendar
Harvard TH Chan School for Public Health Webinar, Friday, November 19, 2:00-3:00 PM (ET) on Understanding Long COVID: The Unseen Public Health Crisis. Long COVID is an emerging public health crisis and this seminar will raise awareness about its impacts. Watch on Facebook, YouTube, or register here to join the discussion.
MassHealth Implementation Council Town Hall Meeting, Tuesday, December 14, 10:00 AM - 12:00 PM (ET). Are you or a family member in One Care, Commonwealth Care Alliance or Tufts Health Unify? Are you thinking about joining? Please come to a MA statewide discussion about One Care with MassHealth and fellow One Care Members, sponsored by the One Care Implementation Council. Register here. Or join the meeting by phone (1-646-876-9923, Meeting ID: 940 3359 4823, Passcode: 373067). See the flyer here and learn more in this FAQ.
CDC ME/CFS Stakeholder Engagement and Communication Call, Thursday, December 16, 3:00 PM (ET). Hear an update from Dr. Elizabeth Unger (CDC) and a presentation from Dr. Hector Bonilla (Stanford University) called "Is ME/CFS Another Face of Long COVID?" Join the webinar here, or join by phone (1-669-254-5252, Meeting ID: 160 473 1665, Passcode: 00127230). No preregistration is needed.
Advocacy Month is May 2022! Solve ME's hugely successful advocacy effort in Washington DC is expanding. Next year there will be two days of meetings with Representatives in the US House on Tuesday, May 10 and Wednesday, May 11, plus one day of meetings with US Senators on Tuesday, May 17. Get up to date information by signing up for Solve ME's newsletter. And watch this space as MassME will be working closely with Solve ME to organize meetings with the MA delegation.
Invisible Disabilities. More than 200 people attended the Invisible Disabilities: Long COVID and Other Post-Infectious Chronic Illnesses event in September. This program was presented by the Health and Disability Partnership at the Massachusetts Department of Public Health, jointly with MassME. The program consisted of individual presentations from three people living with different post-infectious chronic illnesses and a discussion of the similarities and differences by Dr. Alfred DeMaria, the former Massachusetts state epidemiologist, followed by a panel Q&A. The panel was noteworthy for its diversity, both in terms of the participants and the illnesses represented. Watch the video here (with captions or a separate version in American Sign Language).
Post-Pandemic Considerations for Forward Thinking Congregations. The Synagogue Council of Massachusetts held a fantastic zoom event in June on how to promote inclusivity post-pandemic using the adaptations made during the pandemic shutdown. Our very own Rebecca Redner and Rivka Solomon were on the panel. The video and other resources are posted here (scroll down to the middle of the page). Please share widely, especially with your congregation leaders and boards, as this information is applicable to all faiths. This event was a follow-on to Rivka's outstanding essay in the Washington Post about engaging with her synagogue via Zoom during the pandemic.
New Monthly Discussion Group Starting in December!
Looking at How ME/CFS Research Might Apply to our Care. As a follow-up to our recent DIY Club, Sharon Simas will lead a new discussion group on how we can look at recent ME/CFS research and work with our healthcare providers to investigate this research and apply it to our own care. Please join us on the second Tuesday of the month for this informative group. Registration details will be sent in a separate email to members.
Support groups are free to attend and are offered to our members. Please note that receiving this newsletter does not automatically make you a member of the Association. You can join or renew your membership here. If you are already a member, thank you for your support! If you are unsure of your membership status, drop us a line at membership at massmecfs dot org.
Volunteer with Us!
Looking for a way to contribute your talents and energy to an important cause? Look no further! Demand is increasing for our patient services -- we need volunteers to help follow up with people who contact us and to help with physician referrals. If you are interested in volunteering, please let us know through our Contact Us page or send an email to volunteer at massmecfs dot org.
Seeking Board Members
We are gratified by heightened interest in the work of our Board of Directors! We are actively seeking Board members to help us implement the ambitious goals in our 2020 Strategic Plan. To learn more about service on our board, please see our Board Recruitment document. If you are interested, let us know through our Contact Us page.
Counting Down to Giving Tuesday!
Check out the inspiring stories on our Facebook page as we count down to Giving Tuesday. Please support our work and make your gift now! And watch for more opportunities to give by responding to your personalized email message or a postal letter, coming soon!