November 2024

In this month's newsletter:

• November Events
• MassME Special Events - Recordings Available
• Advocacy Committee Update
  
• MassME Health Survey
• MassHealth Update
• Newsworthy Events and Links

Sunday Conversations

“Your Doctors are Human Beings, Too!”
Sunday, November 17, 2024, 4 p.m. Eastern Time

You may find it easy or challenging to relate to each of your doctors and other providers in ways that help you get what you need from them. Both doctor and patient contribute to that relationship, usually in different ways, based on our personalities, roles, and expectations.  This presentation and discussion will offer you some tools that can help make that relationship both effective and fulfilling.

The discussion will be led by Ruth Axelrod, MHSA, PhD, who will draw on her career in healthcare and academia, as well as her personal health journey, to facilitate conversation.

A recording will be available after the event.

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

Young Adult Support Group  - Ongoing Registration for Oct/Nov/Dec

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.

There is one registration for the entire session.  Once registered, you are welcome to attend as many meetings as you like.

MassME 2024 Annual Meeting: A Powerful Paradigm for Living with Chronic Illness, with guest speaker Patricia Fennell, MSW, LCSW-R, clinician, researcher, educator, and author

Living with what was then commonly referred to as Chronic Fatigue Immune Dysfunction Syndrome (or its popular pseudonym, “Yuppie Flu”), Patricia had experienced the disbelief, dismissal, fear, and isolation familiar to many of us. Drawing from her professional experience, she developed strategies and solutions for “taking back her life,” and then shared them. In her work as research scientist, clinician, and educator, Patricia describes a powerful paradigm for understanding how ME/CFS challenges one’s very sense of self and role in society and, more importantly, how to go about accepting and managing those challenges. We spoke with Patricia about her experience applying her methods to her clients, her experience teaching other health professionals in a variety of disciplines to use these methods, and how things have changed in the last three decades for those living with ME/CFS.

MassME collaborated with the University of Massachusetts Chan Medical School on a mini symposium on October 4: ME/CFS, Long COVID, and Other Infection-Associated Chronic Conditions: What They Teach Us.

The event was open to healthcare providers, trainees, and students at the Medical School, as well as to patients, caregivers, and the general public.

If you found these recordings, or others on our channel, helpful, please support MassME at  https://massmecfs.org/giving

Advocacy Activities 

Our MassME Core Advocacy Team continues to meet monthly, and we were happy to welcome three new members!  We are developing a charter for our group and drafting a mission statement.

Our team has established legislative contacts with Senators Jo Comerford and John Cronin, and Representative Kate Hogan , and we are working on constituent outreach to Representative Mindy Domb. Communications involved including wording about IACCIs in Long COVID legislation, funding for activities such as public and health care worker education, and data collection. 

Please email us at advocacy@massmecfs.org if you would like to get involved.

MassME would like to gather some information from our constituency that can help inform our advocacy efforts aimed at improving care and services that support people with ME/CFS and related conditions. 

Over the next months we will be sending out short surveys to hear about your experience as a patient. All information will be kept confidential. The first survey focuses on ME/CFS diagnosis. Thank you for taking the time to tell us about your illness journey. 

MassHealth Updates Regarding Transportation for the Direct Benefit of Children Under 21 and for Wheelchair Repair

This bulletin provides information about the allowed transportation of parents, family members,
and caregivers. It clarifies coverage of transportation for the benefit of MassHealth Standard
and CommonHealth members under 21 years old, as well as member transportation to assess or
repair certain durable medical equipment (DME).

Severe ME/CFS: Care, Rights, and Research

This four-part webinar series presented by Solve M.E. and the Bateman Horne Center will feature medical professionals, legal experts, scientists, and care partners, discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME.

Each webinar takes place from 1:00 - 2:00 PM ET. The next topics and dates are: Legal Rights (November 13), Medical Care (December 4), and Research (January 15).

Register here. 

Legal Advice for Chronic Illness Disability Claims

This video by the Institute for Neuro-Immune Medicine explores the challenges people with chronic conditions like ME/CFS, Long COVID, and other neuro-immune disorders face when trying to get disability benefits.

Dr. Nancy Klimas, Dr. Irina Rozenfeld, and Atty. Edward Dabdoub offer valuable advice from both medical and legal perspectives and explain how important it is to properly document symptoms to support a disability claim. Atty. Dabdoub also shares tips on how to avoid common pitfalls when dealing with insurance companies.

Have you wondered how AI might be used as a tool in ME/CFS research and care?

In the latest episode of the ME/CFS Alert video series, Llewellyn King interviews Alice Tang, a bioengineer, data and machine learning scientist, and an MD/Ph.D. candidate in the Sirota Lab at UCSF and UC Berkeley. Tang aims to apply her training to AI and technology to improve health care access, health literacy, and precision medicine applications that take equity and bias into account.

In this episode, Tang speaks with King about the promise of the application of AI in ME research — for example, how AI might be able to determine why ME can be found in clusters. But she cautions the ME community about the dangers of asking AI for answers, due to bias in medical data.

In Case You Missed It: Free COVID Tests from the Government

The government is again offering free at-home COVID-19 rapid tests. They will send 4 tests to each household. Order your tests here.