September 2024

In this month's newsletter:

• Special Events
• September Events
• MassHealth Member Advisory Committee
• Advocacy Update
• Newsworthy Events and Links
• Spotlight: Beth Harris

• In Memoriam: Deborah Waroff

We are happy to collaborate with UMass Chan Medical School to present

ME/CFS, Long COVID, and Other Infection-Associated Chronic Conditions: What They Teach Us

October 4, 2024

9 am - Noon ET

Hybrid and in-person at:

UMass Chan Medical School
Albert Sherman Center, Second Floor Auditorium
368 Plantation St.
Worcester, MA

Open to all Health Care Providers, Trainees, Students, and Researchers.
Patients and Caregivers welcome!

Click here for full details.

“Dr. Jill Crista Answers Your Questions About Mold”

Sunday, September 15, 2024, 4pm ET

Dr. Jill Crista is a pioneering Naturopathic Doctor and renowned educator on complex chronic illnesses including mold sickness, Lyme disease, post-concussion syndrome, and PANDAS and PANS. She's the author of the highly acclaimed best-seller, Break The Mold: 5 Tools To Conquer Mold and Take Back Your Health.

Dr. Jill will spend an hour with us answering our questions about mold illness: diagnosis/symptoms, treatments, and relation to ME/CFS.

We welcome your mold stories and questions! Click here to submit.

This program, focusing on clinical aspects, is a sequel to our program in April featuring Michael Rubino, which discussed environmental factors: assessment and remediation in our living spaces.

There is no Sunday Conversation in October.
We hope you will attend the MassME Annual Meeting! 

Did you miss Sara Nesson's performance of Body of Water?  If so, we encourage you to check out her next virtual event with Health Story Collaborative, on Sunday September 15, at 2 pm ET and/or join her email list so you can hear about other future events. You can register here for the Health Story Collaborative event.  It’s really special to see Sara’s work live if you can!

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

Young Adult Support Group  - Summer 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.

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

MassHealth Seeks Members for Advisory Committee

MassHealth is now accepting applications for the MassHealth Member Advisory Committee (MAC). MassHealth is seeking approximately 15 individuals to join the MAC. This includes current or former MassHealth members as well as guardians and family caregivers of MassHealth members. MassHealth seeks to select a group of MAC members who reflect the rich diversity of the communities MassHealth serves. Interested individuals should fill out the application and submit it by email or mail.

Applications must be received by September 27^th, 2024 at 5:00 PM. The application and more information are available on the MAC website.

The Latest from the MassME Advocacy Team

Advocacy Group

We held the first meeting of the MassME Core Advocacy Group (CAG) in August. Together our advocacy group will: 

• Explore how to effectively use the contact database
• Investigate the structure, roles, and responsibilities of MA Department of Public Health
• Learn about the legislative process, including committee structure 
• Develop strategies to address legislative issues 
• Connect with other agencies/groups

New database platform

We are excited by the potential of MassME’s new database platform to allow targeted communication with MassME members and contacts regarding advocacy and legislative actions. Our Core Advocacy Group team may be reaching out to make sure we have your updated contact information. This will ensure everyone can play a part in our efforts to secure a place at the table and work on effective legislation.  

Developing our advocacy goals

We are working to define and clarify our goals of working with the Massachusetts legislature and the Department of Public Health to introduce programs supporting those with Long COVID as well as those with ME/CFS and other IACCIs (Infection Associate Chronic Conditions and Illnesses.)  We hope Minnesota’s inclusive program can be a model for our engagement with the Department of Public Health. 

Contacts

We have sent materials to and/or met with:

• Secretary Kate Walsh, Executive Office of Health and Human Services
• Dr. Larry Madoff, Infectious Disease and Laboratory Sciences, DPH
• Legislative Aide for State Senator Jamie Eldridge

Contact us at advocacy@massmecfs.org if you would like to join our advocacy volunteers. Stay tuned for information on how you can easily make a difference from your own home!

Cheryl Breslin, Volunteer Advocacy Coordinator

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. Topics and dates are October 9: Caregiving, November 13: Legal rights, December 4: Medical care, and January 15: Research.

Register here. 

NIH RECOVER Seminar on September 10, 12:00 PM (ET)

The NIH RECOVER research program will present a seminar, Characterization of Long COVID Among Children and Adolescents, Cohort Insights, on Tuesday, September 10th at 12:00 noon (ET). Researchers will present early findings from the Pediatric Observational Cohort study. Register for the seminar here.

Recordings of previous seminars can be viewed here.

Mark Your Calendar: NIH RECOVER Initiative Phase 2 Kick-Off Meeting, September 23-25

NIH is gearing up for the second phase of the Researching COVID to Enhance Recovery (RECOVER) Initiative which will focus on clinical trials to evaluate treatments. They will host a kick-off meeting on September 23 to 25 (in person and virtual).

They invite researchers, healthcare providers, people affected by Long COVID, advocacy organizations and federal policymakers to discuss the structure and governance of Phase 2, assess the current research landscape, and help plan future Long COVID clinical trials. More details will be coming soon. Sign up for email updates here.

Resources on Orthostatic Intolerance from Dr. Peter Rowe

Dr. Peter Rowe at Johns Hopkins University is a world-renowned expert on orthostatic intolerance, especially in children and adolescents.

He generously shares his expertise through a webinar series, available on YouTube through the #MEAction Maryland channel. The first webinar covers management of pediatric ME/CFS and the second covers management of orthostatic intolerance.

He has also recently published an updated book called Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment. It is available from Johns Hopkins University Press and Amazon, or ask your library to purchase a copy.

Join Solve M.E. for an author discussion with Peter Rowe on Tuesday, September 10th at 3:00 PM (ET). Register here.

Learn About IACCIs

The National Academies of Science, Engineering, and Medicine report Toward a Common Research Agenda in Infection-Associated Chronic Conditions and Illnesses delves deeply into the nature and definition of these conditions, and the need for coordinated research. Check out their conference and publications page and find out what known illnesses are considered to be IACCIs and the state of knowledge about them.

National Academies Webinar Series on Unmet Therapeutic Needs

The National Academies are holding a three part webinar series exploring the alignment of therapeutic development with disease burden and unmet needs. The third webinar will take place on Friday, September 13th from 3:00 to 5:00 PM (ET) and can be watched here. No need to register in advance.

You are also welcome to share your perspective on unmet therapeutic needs, investment in innovation, and aligning investment with disease burden with the National Academies here.

An Advocates' Debrief of Ron Davis's 2024 Annual Meeting

Rivka Solomon attended this annual invitation-only meeting of leading ME/CFS scientists and researchers, and came away inspired and hopeful. Read Rivka's debrief here.

Keeping perspective after Long COVID

Before her illness Beth led an active and creative life. Growing up in Florida she enjoyed sports and was an avid swimmer. She was an artist who enjoyed using different mediums such as painting, sculpture, working with metal, and printmaking. She went to college in Georgia and became a cartographer which offered an outlet for her artistry. She lived in California and Hawaii before moving to Massachusetts to be near her daughter who was starting her family.

Her five adopted grandchildren became a major focus of Beth’s life as she helped to raise them. She took care of them if they were sick, had them for overnights, and taught them to swim. Beth would cook family meals and host large holiday dinners.

She spent her days swimming, gardening, visiting friends, and going to farmers markets, and she loved thrift shopping. She worked in the mental health field and became an advocate to provide services for those in need.

Click here to read the rest of Beth's story and view some of her artwork.

In Memory of Deborah Waroff

We were saddened to learn of the passing of long-time MassME Member Deborah Waroff in August from breast cancer.

Deborah lived with ME/CFS for over 35 years, and was a powerful advocate for our community. She wrote numerous articles, attended conferences, and testified before the National Institutes of Health on ME/CFS. Together with Llewellyn King she founded the YouTube channel ME/CFS Alert.  The channel, which aims to "comfort patients, educate doctors, and stimulate government research on ME," has 135 episodes.

We are so grateful for Deborah's efforts over many years to raise public awareness, to educate healthcare professionals, and to support those living with the illness.