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MassME’s Boston Waterfront 5K is for everyone! |
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Run, walk, or roll with Team MassME! OR Cheerlead from home! Support our Team and ask others to be supporters. |
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You can help raise awareness about ME and fund MassME’s vital programs. |
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Here’s how:
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! |
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Sunday Conversations Community Conversations "Shared Paths: Connecting Through Similar Stages of Your Chronic Condition"
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This edition of Sunday Conversations will be a discussion with small groups. Participants will be grouped based on how long they have been living with their condition or the stage they are currently experiencing.
We invite you to share common themes such as: How are you coping right now? What strategies or supports have helped you at this stage? And how does this stage compare to other times in your illness journey?
The discussions will not be recorded. |
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Previously recorded presentations, slides, and other resources from past events are available on the main Sunday Conversations Page. |
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New England MeetUp group meets monthly on Zoom on Wednesdays at 2pm ET.
This group is for our younger Gen Z and Millennials to gether together and support each other.
Open to residents of MA, ME, NH, VT, RI, and CT. |
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May 12th is International ME Awareness Day, also known as World ME Day. |
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International ME Awareness Day provides an opportunity to raise public awareness of ME/CFS and those living with the illness. You can help by wearing blue, and sharing posts or experiences on social media using the hashtags #MECFSAwareness, #GoBlueforMECFS, and #GoBlueforME
This year, MassMe has again arranged for several bridges in Massachusetts to be illuminated in blue on the night of May 12. In Boston and Cambridge, you will see the Zakim Bridge and the Longfellow Bridge in beautiful blue lights. Also lit will be the Burns Bridge in Worcester, and the Fore River Bridge in Quincy/Weymouth. |
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Be sure to tag us @massmecfs if you post a photograph! |
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We are also very excited to announce that we will launch our new MassME website on ME Awareness Day! You will be able to find us in the same place— http://massmecfs.org – but with a refreshed look and easier navigation. Coming soon as well is a new member and donor portal. We’ve been working hard on this, and can’t wait to welcome you to the new site! |
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REMINDER TO TAKE ACTION! Include ME/CFS in New Programs for Tracking and Care |
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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. |
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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. |
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Thank you!
MassME Advocacy |
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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 |
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Last chance to register for Advocacy Week |
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We strongly encourage you to sign up for SolveME's annual Capitol Hill advocacy effort. All meetings with congressional offices 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.
Registration closes on May 12, so be sure to sign up now!
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And Still it Remains: A Long COVID Exhibition |
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MassME member Karin Dove will be showing her artwork at this upcoming exhibition in Loveland, CO, along with 14 other artists impacted by Long COVID.
The exhibition, which runs from May 9 to June 28, aims to increase awareness of Long COVID and create community among those living with the illness. The event features various programming including an artist talk on June 14.
For more information, visit: https://www.artworksloveland.org/ |
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Research presentation |
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Watch the recording of the SolveME webinar, “Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID."
This webinar presents the research of Liisa Selin and Anna Gil, of UMass Chan Medical School, along with Roshan Kumar of HiFiBiO Therapeutic and patient representatives Megan L. Fitzgerald and Rivka Solomon.
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Long COVID Research Study at Beth Israel Deaconess |
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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.
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2025 UCSD Graduate Student ME/CFS Essay Contest |
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Congratulations to ME/CFS San Diego's essay contest winners! Each year students from various disciplines submit essays that contribute to raising awareness, enhancing understanding, and advancing solutions for ME/CFS and related conditions.
Learn about the essay contest and read the winning essays.
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Upcoming Renegade Research Events |
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Renegade Research hosts a series of Research Roundtables and Clinician's Roundtables. Upcoming event in May:
Clinician's Roundtable: Dr. Malcolm & Dr. Haughton discuss ME & Long Covid. May 16, 2025 at 1:00pm ET
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Sign Up for Your Social Security Online Account |
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If you do not already have an online Social Security account, sign up for one now.
This should make verifying your identity and accessing benefits easier in the future. You can also check the status of an application or get an estimate of future benefits.
You will need a valid email and an account with either Login.gov or ID.me, the two identity verification services that the government works with. Once you have one of those accounts, you can create your online social security account.
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Are you Homebound from Long COVID? Do you live within 30 min from Boston? |
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PolyBio and MGB are working to de-centralize research so that people severely affected by Long COVID fatigue and PEM can participate. This study is looking at inflammatory, viral, and coagulation-linked biomarkers between people with LC and healthy controls.
You may be eligible to participate in an at-home visit that consists of a blood draw, saliva collection, and questionnaires. Learn more here.
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Massachusetts Dysautonomia In-Person Meetup |
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Dysautonomia International Massachusetts is hosting a free patient and caregiver meetup in Northampton, MA on May 15th at 11:00am ET.
Registration is limited. RSVP here.
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Mark Your Calendars: IACFS/ME Conference October 22-25 in Fort Lauderdale, FL |
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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. |
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TEDxOjai: I Am One of the Millions Missing |
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Author, educator, and advocate Maggie Boxey shares what her life is like living with ME/CFS, and how she has found a community of people for whom "feeling better" might never be an option.
Her message challenges the way people think about chronic illness and provides ways for able-bodied individuals to help and advocate for those millions missing.
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Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. |
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Massachusetts ME/CFS & FM AssociationPO Box 690305Quincy, MA 02269
617-471-5559 contact@MassMECFS.org |
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© ::Massachusetts ME/CFS & FM Association::. All Rights Reserved |
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https://massme.monkeypod.io/mailcoach/webview/campaign/3a5f630a-6393-404c-8836-4d7f3f9be9da ::unsubscribeLink:: |