Events

Groups for Gen Z and Millennials

You must live in MA to attend the Wellness Workshop and New England for the meetup.

Click here for Wellness Workshop details

Click here for New England Meetup details

Sunday Conversations
ME/CFS and hEDS with Sallie Rediske

"Twisted Connections: The Dynamic Relationship of ME/CFS and Hypermobile Ehlers-Danlos Syndrome"

Sunday, April 27, 2025, 4 p.m. Eastern Time

In this edition of Sunday Conversations, Sallie Rediske, MPT, will provide a casual yet informative exploration of the functional implications of ME/CFS and hypermobile Ehlers-Danlos Syndrome (hEDS). She will talk about the ways fatigue affects people with both ME/CFS and hEDS, highlighting the shared experiences and challenges faced in daily life and how to navigate the demands of both ME/CFS and hEDS. She will also provide practical strategies to address mechanical issues associated with hEDS within the context of ME/CFS. Craniocervical instability (CCI) and occult tethered cord will also be included in the discussion as they are significant coexisting concerns for many with ME/CFS and hEDS. A recording will be available after the event.

Click here for Sunday Conversations details

Previously recorded presentations, slides, and other resources from past events are available on the main Sunday Conversations Page.

UPCOMING: The 2025 Boston Waterfront 5K

MassME’s Boston Waterfront 5K is for everyone!

You can help raise awareness about ME and fund MassME’s vital programs.

Run, walk, or roll with Team MassME!

Cheerlead from home! Support our Team and ask others to be supporters.

Here’s how:

Join the Team. Register as a participant. This inspiring June 15 event unfolds along the scenic waterfront and ends with post-race festivities. The 5K course will be accessible to wheelchairs, including motorized devices. (If you need assistance, up to two support members can accompany you without registering.)
- You will have your own MassME fundraising page. Ask your network to support your participation. Registration is simple. (Let us know if the $40 fee is a hardship.)
Ask friends, family members, and colleagues to run, walk, or roll on your behalf. Donations will go to your fundraising page.
Recruit supporters. Supporters can donate to our main Team page or to any Team member. Imagine if every MassME member enlisted 5 supporters for our 5K! Donations—especially now—are critical for MassME to continue to bring you essential information and services.
Be a supporter. Donate what you can at our main Team page, or choose a Team member to support. No amount is too small

The 2025 Boston Waterfront 5K is hosted by the McCourt Foundation. Last year, MassME raised over $13,000, and was a top fundraising organization at this annual event. Let’s see if we can do even better this year!

Please share this opportunity with your network. Support Team MassME by clicking here!

Advocacy Corner

TAKE ACTION!

Include ME/CFS in New Programs for Tracking and Care

Ensure that people with ME/CFS are included in the tracking and supportive care for those with infection-associated illnesses.

Two Long COVID bills have been introduced in the Massachusetts Legislature that would provide 1) tracking and impact measurement, and 2) access to supportive care. MassME supports these bills, but we are asking that they be amended to specifically include ME/CFS to ensure more accurate data and equitable care in Massachusetts.

Contact your legislators and encourage them to support the bills and our amendments.

We have provided an easy toolkit with full details or click the quick action links below.

Thank you!

MassME Advocacy

QUICK ACTION: PHONE CALL

QUICK ACTION: EMAIL

MassME Health Survey #2

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 focused on ME/CFS diagnosis. The subject of the second survey is Accessibility Services.

Thank you for taking the time to tell us about your illness journey.

Click here to fill out Survey #2 - Accessibility Services

Solve M.E. Annual Advocacy Week

Register for Advocacy Week 2025, June 23-27

We strongly encourage you to sign up for SolveME's annual Capitol Hill advocacy effort. All meetings will be held virtually, so no travel is required.

SolveME will provide all the guidance you need to share your story with your elected representative, and to advocate for the research funding we need.

"The stronger our voices, the greater our impact. Let's make sure every leader in Washington understands the urgent need for research and care." Registration closes on May 12, so sign up now.

Newsworthy Events and Links

RECLAIM Study seeking participants

RECLAIM is still recruiting participants — adults and children aged 12-17 — who self-report with ME/CFS, Long COVID, and other IACCIs.

The Sluss Lab at UMass Chan Medical School is investigating how oxidative stress influences chronic conditions such as Ehlers-Danlos Syndrome (EDS), ME/CFS, and other IACCIs. Adult study participants can expect three 30-minute in-person visits, and child participants will have two in-person visits with the option to join a follow-up study.

Long COVID Research Study at Beth Israel Deaconess

Dr. Dan Barouch at Beth Israel Deaconess is starting a research study on the effectiveness of abrocitinib vs placebo for improving severe fatigue in adults with Long COVID.

You might be eligible if you are over 18 years of age, have had Long COVID symptoms for more than 2 months, and have not recently tested positive for COVID-19. Participants will provide blood samples and answer questionnaires during 6 visits over 4 months. Compensation of up to $75 and a parking voucher is available for each study visit.

For more information contact: BIDMC-CVVRTRIAL@bidmc.harvard.edu or call 617-735-4610.

New Virtual Clinic for Complex Illnesses

Ravel Health is a new virtual clinic that treats complex conditions and illnesses such as ME/CFS, Lyme, and Long COVID. They operate on a subscription model where you pay for an initial consultation and then pay a monthly fee for ongoing monthly appointments. All appointments are virtual. They do not take insurance. They screen providers to ensure that they have a background in treating complex conditions.

Upcoming Renegade Research Events

Renegade Research hosts a series of Research Roundtables and Clinician's Roundtables.

Upcoming event in April:

Clinician's Roundtable: Orthostatic Flow Syndromes Improve by Treating Pelvic Venous Congestion

Apr 11, 2025 01:00 PM ET (10:00 AM PT). Register here.

Mark Your Calendars: IACFS/ME Conference October 22-25 in Fort Lauderdale, FL

The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) is hosting their scientific research conference in Fort Lauderdale, FL from October 22-25.

The conference is aimed at clinicians, researchers and educators, although anyone affected by or interested in ME/CFS, Long COVID, or other infection associated chronic conditions is welcome to attend. Research abstracts and workshop proposals are due May 5th. Learn more here.