June Newsletter

In this month's newsletter:

• Membership Fee Increase
• June Events
  
  • Sunday Conversations
  • Young Adult Support Group
• Special Event - Boston Waterfront 5K
• MassME@40 - From The Archives
• Newsworthy Events and Links

MassME has been an almost entirely volunteer-run organization for forty years, and we have been able to keep our membership fees accordingly low. But now, increasing demand for patient services, support groups, and informational events means that we need to raise our membership fees for the first time since the year 2000. This increase will go into effect on July 1:

$40 individual membership

$55 family membership

Sign up or renew now! If you become a member or renew your membership before July 1st, you will receive all our membership benefits for the next twelve months at the current fee level ($25 individual, $40 family).

All of our income is used to support our community and essential services. If our membership fee is a hardship, we offer Courtesy and Reduced Fee memberships. Please contact us.

Improving Pain Care Through Education and Policy”
Sunday, June 23, 2024, 4 p.m. Eastern Time

In this edition of Sunday Conversations with MassME, we will continue our series on comorbidities with a focus on pain. A panel of three presenters from the Massachusetts Pain Initative (MassPI) will present on the work their organization does to improve the lives of people suffering from pain through knowledge, education, and policy reform.

A recording will be available after the event.

The recording from June's "Are You M.A.D.? An axis awry of Mast cell activation disease, Autonomic neuropathy, and Disorders of connective tissue" can be found here.

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

Young Adult Support Group  - Spring 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.

Support Team MassME at the McCourt Foundation's 2024 Boston Waterfront 5K on June 9

Participate!
Come to the race and cheer us on as we Run/Walk/Roll for ME/CFS and the Long Haul! Help us to raise awareness of ME/CFS and Long COVID, and to fund MassME's ongoing information and support programs. The race begins at 10:00 AM on Sunday, June 9. The start/finish line is at the Black Falcon Cruise Terminal, 1 Black Falcon Ave, Boston. See the main event website for a course map and more information about the event. Public parking is available, and the course is accessible via public transit on the Silver Line.

Donate!
You can donate at the MassME team page, or choose one of our team members to support their efforts. All donations will help us continue to bring you information and support programs. The donation page will be accessible until June 20th. Help us reach our fundraising goal of $15,000!

Together, we are stronger!

 As part of MassME@40 celebration we will be presenting a series of stories and documents from the history of our remarkable organization.

The Cookbook

Did you know that MassME published a cookbook? Cooking with Ease --- Just for the Health of It was published in 1991 by our organization, then called the Massachusetts CFIDS Association. .

National Academy of Medicine Report on LC Case Definition

A US National Academy of Medicine Committee has been tasked with examining the case definitions for Long COVID and creating a LC definition for the US government. The full report and summary/ supporting materials will be released in mid-June. On June 11 at 1 PM EDT, there will be a public webinar introducing and summarizing the report. Join the webinar here. The webinar will be recorded for later viewing.

Dysautonomia International's 12th Annual Conference, June 28-30, Chicago, IL

Dysautonomia International is holding their annual conference on autonomic disorders, including POTS, a common comorbidity with ME/CFS. The conference will bring together patients, researchers, clinicians and government policy makers to discuss diagnosis and treatment of autonomic disorders.

There are three ways to participate: attend in person in Chicago ($350); watch the livestream of the lectures in the main ballroom ($100); or access the recordings a month after the conference ($25). Learn more here and register here.

New Study Shows Neuroinflammation in Long COVID

A new study by Mike VanElzakker (MGH, Harvard Medical School) and colleagues revealed brain inflammation across multiple regions in Long COVID participants versus controls. The study showed correlations between the neuroinflammation and signs of vascular dysfunction.

Long COVID Job Accommodations in the Harvard Business Review

The Harvard Business Review's annual Big Idea feature focuses on a topic of current pressing concern for businesses. The 2024 Big Idea is 'Working with Chronic Illness' and the lead article outlines how businesses can recognize and make accommodations for employees with Long COVID and other chronic illnesses like ME/CFS. The authors of the article are Katie Bach (Brookings Institution and PolyBio Research), Ludmila Praslova (author of The Canary Code), and Beth Pollack (MIT).

Contribute to Research on Long COVID Treatments

Join the NIH, FDA, and partners (including #MEAction and Patient-Led Research Collaborative) in advancing our understanding of the treatments of Long COVID. What treatments are you taking and how have they impacted you? Take the CURE ID Treatments for Long COVID Survey now by visiting CURE-ID or download the “CURE ID” mobile app now! CURE ID is an online treatment repository to collect information about what treatments have worked or not worked for difficult to treat diseases. The data will help guide future clinical trials. Learn more here. 

Join a Wearable Research Study

Julia Vogel at Scripps is leading a research study to determine if using using wearables for activity management can help manage the symptoms of Long COVID, ME/CFS, and/or POTS. Learn more here or check to see if you qualify for the study here. If you do not already own a wearable device, the study will provide one. 

Register for the Autoimmune Registry

The Autoimmune Registry Inc. (ARI) collects patient-reported data on all autoimmune diseases, including suspected autoimmune conditions like Long COVID, fibromyalgia, and ME/CFS. It aggregates information on these diseases and their comorbidities to help researchers identify trends and gain a deeper understanding of this complex class of conditions. For details and to join the registry, click here.

Video of Dartmouth Medical Education Event Now Available

In November 2023 #MEAction Northern New England (formerly #MEAction New Hampshire) hosted a medical education event at the Dartmouth Hitchcock Medical Center. 

The day-long event featured Lucinda Bateman of the Bateman Horne Center presenting information on diagnosis and clinical care for ME/CFS and Long COVID, Lisa McCorkell of the Patient-Led Research Collaborative on the current state of research for IACCIs, and two panels with clinicians and patients.

The video from this event is now available on YouTube broken into sections for easy viewing:

• Opening Remarks with Creighton Ward and Ryan Prior
• Post-Viral Syndromes Inform Diagnosis and Care of Long COVID with Dr. Lucinda Bateman
• Panel 1: Educating Each Other
• The Future of Medicine and Research for Infection-Associated Chronic Conditions with Lisa McCorkell, MPP
• Panel 2: Navigating the Systems
• Closing Remarks with Giovanni Clarke and Dr. Chris Doyle

Hear Massachusetts Researchers Talk About T-Cell Dysfunction in ME/CFS and Long COVID

Hosted by Research Renegade/Remission Biome, this roundtable took place on May 24, 2024.

Speakers: Liisa K. Selin, MD, PhD, and Anna Gil, PhD, viral immunologists from the Univ. of Massachusetts Chan Medical School, and Roshan Kumar, PhD, HiFiBiO Therapeutics, a clinical stage global biotech company in Cambridge, MA. These two Massachusetts research teams are working together on a project awarded by the Patient-Led Research Collaborative (PLRC). Also joining are PLRC Patient Representatives Megan L. Fitzgerald, PhD, and Rivka Solomon, MS.

Watch the video here.