Sunday Conversations April 2026 |
Community Conversation on ADRCs
Sunday, April 19, 2026
4:00pm Eastern Time on Zoom |
Join us this month for a Community Conversation, where we invite you to share your lived experience. This month, we’ll discuss the services offered by Aging and Disability Resource Centers (ADRCs). These organizations provide information and points of entry into services and support for people with disabilities. We’ll start by sharing some information on ADRCs and the services they offer, and then break into small discussion groups. Please bring any stories you may have about your experience with this kind of organization, especially how they were (or were not) informed and equipped to help those with complex chronic conditions like ME/CFS. Community Conversation events are not recorded. This event is free and all are welcome!
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Missed the March meeting? Recording Available Now! |
Heal Thyself: The Doctor as Patient |
Aimee Nefcy, MD discusses how being a physician shaped her experience as a person with ME, led to her creating a support group for other physicians, and shares her thoughts on how medical education can be reformed. |
We are excited to announce that our New England Meet Up is now a Northeast Meet Up! |
We welcome young adults from the entire Northeast region.
MA, ME, NH, VT, RI, CT, NY, NJ, and PA! |
Advocacy Week 2026 was March 23rd - 27th and was led jointly this year by Solve ME/CFS and #MEAction. Rather than meeting with Congress, the focus this year is on better medical education about ME/CFS. You can read more about this effort, and you can still add your name to the outreach to state medical boards and chief medical officers. MassME is coordinating the outreach to the Massachusetts patient safety agency. If you are a Massachusetts resident, please check for an email from us on how you can help. If you have questions, contact advocacy@massmecfs.org.
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Newsworthy Events and Links |
UC San Diego Students Recognized for ME/CFS Essay Contest on Healthcare Innovation |
ME/CFS San Diego has announced the winners of its 2025–2026 UC San Diego Student Essay Contest, recognizing innovative student work aimed at improving awareness, care, and advocacy for people living with ME/CFS. The contest highlights interdisciplinary ideas from emerging leaders in communication, public health, and science working to address one of the most complex and underrecognized diseases affecting millions of Americans. First Place went to Ariana Lyman, an undergraduate student studying Communication and Psychology, Her essay, Designing Energy-Respectful Communication in Healthcare for People with ME/CFS., examines how healthcare systems can better respect the limited energy capacity and post-exertional challenges experienced by patients. Click here to read the top three winning essays.
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Seeking Participants for the Life Improvement Trial |
Open Medicine Foundation along with Mass General Bingham are looking for participants for a study to test the effectiveness of pyridostigmine (aka Mestinon) and low-dose naltrexone (LDN) as treatments for ME/CFS and Long Covid. Learn more here.
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Clinical Trial on Barcinitinib and Long COVID |
The NIH is funding a clinical trial (REVERSE-LC) to evaluate the efficacy of the immunomodulatory drug baricitinib for treating the persistent neurological and cardiopulmonary symptoms of Long COVID. There are 13 study sites, including Brigham and Women's in Boston. The study will last for one year and involves taking pills (either baricitinib or a placebo) for six months, then continuing to monitor brain function, heart and lung function, and overall quality of life for another six months. Learn more here.
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The IACFS/ME Newsletter Returns! |
The International Association Association for CFS and ME (IACFS/ME) is once again publishing a newsletter three times a year. The February issue includes an overview of the 17th Research and Clinical Conference (held virtually in October 2025) and a guide to evaluating research studies.
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New Long COVID (and ME/CFS) Treatment Guide |
The Patient-Led Research Collaborative and RTHM, a private clinic, have released a new Long COVID Treatment Guide describing medical treatments to which at least some people have responded positively in clinical trials, case studies, or patient-reported outcomes. Many of these studies included ME/CFS as well as Long COVID patients. The guide is intended as a source of information for conversations with health care providers.
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Symposium on Long COVID and Society at Columbia |
Columbia University is hosting a free symposium on Long COVID and Society on Monday, April 20 from 9:30 AM to 5:00 PM (ET). Speakers include sociologists, historians, anthropologists, patient advocates, clinicians, and scientists working around issues related to Long COVID's impact on social inequalities. Attendance can be in-person or virtual. Learn more here or register here.
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Julie Rehmeyer in the New York Times |
Science writer and advocate Julie Rehmeyer published a beautiful and moving article on the anniversary of Beth Mazur's passing a year ago: "May I End My Life With You?" The article appeared in the New York Times' Modern Love section. Beth Mazur was co-founder of #MEAction and an extraordinary voice for those with ME. Warning: This article references suicide. If you or someone you know are having thoughts of suicide, call or text 988 to reach the National Suicide Prevention Lifeline. For those struggling with chronic illness, support is available.
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Building Your Next Chapter |
Contracting ME/CFS has been one of the most challenging and yet rewarding periods of my life. It forced me to give up much of what I did and who I thought I was before I got sick, but it also opened a new chapter—one with new goals, new perspectives, and ultimately a new way forward. |
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Massachusetts ME/CFS & FM Association is a 501c3 non-profit registered in the state of Massachusetts. |
Massachusetts ME/CFS & FM Association PO Box 390459 Cambridge, MA 02139-0459
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