October 2023

In this month's newsletter:

• Upcoming Events
  
  • Annual Meeting: October 28th @ 1pm ET
  • Young Adult Support Group - Fall Session
• Special Message from our Sunday Conversations Team
• MA Social Services Integration Work Group
• Newsworthy Events and Links
• MassME: Be in the Mix!

Ed Yong is a celebrated science journalist who cares deeply about accurate, nuanced, and empathetic reporting; clear and vivid storytelling; and social equality. His coverage of ME/CFS and Long COVID for The Atlantic has been groundbreaking. Yong’s work has contributed to a changing public perception of these illnesses, moving us toward a public health agenda that recognizes the serious nature and commonalities of infection-associated chronic conditions, and supports advances in research and clinical care. 

Mr. Yong will share how he came to the subject of ME/CFS and Long COVID and what has motivated him to dig so deeply and tenaciously into them. He will share his thoughts on what is yet to be explored about ME/CFS from a journalistic perspective, and how science journalism contributes to changing perceptions.

This event will be virtual, and will be recorded for later viewing.

Attendance is free for MassME members.
Check your email for your special member-only registration link.
Not a member yet? Click here!

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Fall Session

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

In an effort to streamline the registration process, we are offering one registration for the entire Fall Session.  Once registered, you are welcome to attend as many meetings as you like.

What age is considered Young Adult?
Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

Do you love Sunday Conversations?

Would you like to help plan Sunday events in 2024?

Our wonderful Sunday Conversations team is looking for interested people to participate in planning and producing these monthly events. We are already talking about new approaches and topics for the coming year. If you have ideas and would like to give back to the community we are looking for YOU! You don’t have to live in Massachusetts – our team currently has members from California and Pennsylvania, as well as Massachusetts.

We meet on the 2^nd and 4^th Thursdays of each month at 5 pm ET, and produce an event on the 3^rd Sunday afternoon of most months. Tasks are varied: contacting and working with potential speakers, publicity/writing, technical (running Zoom, creating/updating web pages, posting video), creating graphics, hosting/moderating events, and making sure that everything gets done on time! If you want to use or expand your skills, this is a great team to join!

If you are interested in finding out more, or in trying this out to see if it might be a good fit for you before making a commitment, we invite you to sit in on planning for our November meeting. Contact Us and someone will get back to you promptly.

We look forward to meeting you!

The Sunday Conversations team

No Sunday Conversation in October!
We’ll see you at the Annual Event on October 28 from 1 – 3 pm ET, “ME/CFS: Changing the Narrative.”

Stay tuned for upcoming announcements about our next Sunday Conversation on November 19, 4 pm ET.

The videos, slides, and other resources from past events are available on the
Sunday Conversations Page.     

MassHealth Seeking Nominees to Participate in Social Services Integration Work Group

The Massachusetts Executive Office of Health and Human Services (EOHHS), the state agency responsible for administering the Medicaid program and the State Children's Health Insurance Program (CHIP) within Massachusetts (collectively, MassHealth), is seeking nominees to participate in a Social Services Integration Work Group (SSIWG). SSIWG will assist EOHHS in its efforts to better integrate social services into the MassHealth managed care framework per the currently approved 1115 MassHealth Demonstration.

Act fast! The deadline is Friday, October 13th. Click here for details.

The Untreated Epidemic: Understanding and Treating Long COVID and ME/CFS

#MEAction New Hampshire is offering free CME credit through Dartmouth Health at their upcoming medical education event, The Untreated Epidemic: Understanding and Treating Long COVID and ME/CFS on November 6^th from noon – 4 pm ET.

Dr. Lucinda Bateman, the Founder and Medical Director of the Bateman Horne Center, and Lisa McCorkell, the Co-Founder and Co-Lead of the Patient-Led Research Collaborative, will deliver a lecture on the most recent advancements in patient-led research on infection-associated chronic conditions.

This event also includes two discussion panels, and is appropriate for patients as well as providers. It is in-person but will be live-streamed. A recording will be available for later viewing.

Register here.   

NIH NINDS Webinar on ME/CFS Research Roadmap: Immune System

The National Institute of Neurological Disorders and Stroke (NINDS) at NIH is holding a series of webinars to explore the current state of research on ME/CFS, discuss knowledge gaps, and suggest future research opportunities. The next one is on the Immune System and will take place on Thursday, October 19th at 11:00 AM (ET). Register here.

The webinar is open to the public and will provide the opportunity to ask questions and make comments. Also mark your calendar for December 8th when Dr. Paul Hwang will present his groundbreaking research on a protein that disrupts mitochondrial functioning and is found in ME/CFS patients.

Patient Summit at SIDM Conference Featuring Jamie Seltzer

The annual Society to Improve Diagnosis in Medicine (SIDM) features a free Patient Summit: Celebrating Patient-Initiated Innovations in Improving Diagnosis on Monday, October 9, 10:15 AM to 12:15 PM (ET)

Hear Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction, talk about efforts to improve diagnosis of ME/CFS. Registration is required. Register here.

The Power of Community: IACCPAC National Webinar

The Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) is an initiative led by Solve ME/CFS, The Long COVID Alliance, Dysautonomia International, COVID-19 Longhauler Advocacy Project, and the Patient-Led Research Collaborative. Over the last months, this coalition has brought together patient advocacy organizations (including MassME) in two workshops to discuss common objectives and identify community needs that would benefit from collaboration across organizations.

In this upcoming webinar, the IACCPAC will present the findings from these workshop sessions and identify a roadmap for future strategic collaboration. This kind of collaborative effort across infection-associated chronic illnesses can strengthen our voices in advocacy and help drive innovative research.

Please join the webinar on October 24, at 12:00 pm - 1:30 pm ET.

Register here.

ME/CFS Continuing Education Course

"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosis and Management in the Age of COVID-19: Expert Insights" is a new CME course on Medscape.

The goal is to better diagnose and manage ME/CFS in persons with ME/CFS-like symptoms and comorbidities, including post-COVID-19 condition (aka "Long COVID"). The information includes specific treatments that health care providers can use to manage common symptoms.

There is a transcript and slides so content can be reviewed quickly. Authors: Anthony L. Komaroff, MD; Lucinda Bateman, MD; David M. Systrom, Jr., MD.

Full details can be found here.

Webinar Replay: “The Nuts & Bolts of Applying for Disability Benefits in the U.S. with ME/CFS or Long COVID”

There is a new disability resource available thanks to the Open Medicine Foundation. This webinar features OMF's Founder & CEO, Linda Tannenbaum, Disability Benefits Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, Ph.D. 

In this informative session, these esteemed experts will share invaluable insights and practical tips to guide you through the process of applying for disability benefits. 

You can watch the webinar here. They have included a summary sheet and offer additional valuable resources.

If you missed it, also see the recording of a Sunday Conversation about applying for Social Security benefits, with MassME members Rob Belluso, Ken Casanova, and Bob Robitaille. 

Did you miss our announcement? You can learn more about our 40 year history by watching the recording of our kickoff event.

Patients, caregivers, advocates: join the MassME Board! 

You can help lead our Association and make a difference in the lives of thousands of people in Massachusetts and beyond. Board service is rewarding—you learn from and bond with others as you contribute to the organization’s mission. We seek a diverse board of people with passion and a broad range of professional and personal experiences.  Curious? Click here for more information.