Registration is ongoing for our Gen Z/Millenial Meet Up Group |
We welcome young adults from the entire Northeast region.
MA, ME, NH, VT, RI, CT, NY, NJ, and PA! |
Team MassME Runs, Walks, and Rolls for Awareness |
Support Team MassME at the Boston Waterfront 5K! |
MassME will again have a team at the Boston Waterfront 5K race. Our team's participation raises public awareness of ME/CFS, Long COVID, and other complex chronic illnesses. This event also raises much-needed funds for MassME's programs. Please donate to support our team and keep our organization strong. You can donate to our team, or you can choose an individual team member to support. All donations come directly to our organization. Last year our team was one of the top fundraisers at this event! If you would like to join us, you can still register to be part of Team MassME, and participate either at the event or virtually from home.
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August 8th was International Severe ME/CFS Day, a day to remember and advocate for those who suffer from severe ME/CFS. Approximately 25% of people with this illness are in the severe to very severe category, and of course, for those people and for their caregivers, every day is Severe ME/CFS Day. The Dialogues for a Neglected Illness project has a series of videos that can help family, friends, and health care providers understand the lives of those impacted by ME/CFS.
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It’s Tick Season, and a Bad One |
Warming temperatures, earlier springs, and changing landscapes are causing tick populations to rise, even in areas where they were once scarce. A July opinion piece in the New York Times (click here for a gift link) lays out the ecological and climate shifts that are driving the spread of ticks and the associated public health challenges. For those who prefer audio, this media briefing on ticks and Lyme Disease was presented by the Johns Hopkins Bloomberg School of Public Health. Everyone should exercise caution when outdoors, especially here in the Northeast. The Massachusetts Deptartment of Public Health has some useful resources, including How to Do a Tick Check and Preventing Disease Spread by Ticks (the latter is also available in Kreyòl, Portuguese, and Spanish). This month a new at-home screening tool will be released. This easy-to-use kit determines whether a tick carried Lyme disease, and could help avoid the mail-in test delays which can miss the critical window for treatment.
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Newsworthy Events and Links |
Renegade Research Roundtable: Patients to Researchers |
Join Renegade Research for a roundtable discussion between patients and researchers on Friday, August 14 at 1:00 pm ET. Short presentations by patients about their own lived experience will be followed by a Q&A with researchers. Register here.
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Renegade Research Webinar: Vagus Nerve Stimulation |
Learn more about the vagus nerve stimulation (VNS) device that will be used in the Renegade Research Catalyst Award project at a webinar on an informal trial on Friday, August 21 at 2 pm ET. Medical professionals will describe the science behind VNS and patients will report on their experience. Register here.
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Borrow a Device and Report How It Works for You |
Solve M.E. has announced a Catalyst Award to Renegade Research to set up a lending program for therapeutic devices that may help manage the symptoms of ME/CFS or Long COVID. The first devices in the study are the Truvaga vagus nerve stimulation device and the Vielight red light therapy device. Participants will contribute data on the impact of the devices. Learn more and register here.
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Survey on ADHD and Inflammation from ADDitude Magazine |
Researchers are finding that inflammatory markers are often associated with ADHD. ADDitude Magazine is conducting a survey about ADHD and conditions such as ME/CFS, MCAS, hypermobility, autonomic dysfunction, pain & fatigue syndromes, and autoimmune issues that are also often associated with inflammation. This survey may help understand the connections between ADHD and inflammation and provide new treatment pathways for ADHD. Take the survey here.
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NIH Workshop on Complex Multisystem Disorders |
Join the NIH National Institutes of Neurological Disorders and Stroke for a two day workshop on Wednesday and Thursday, September 23-24 for researchers, clinicians and people with lived experience to discuss our current understanding of complex multi-system disorders such as infection-associated conditions, pain conditions and autonomic nervous system conditions. Join the meeting in person or virtually. Learn more and register here.
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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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