Allies and Partners

When the Association was founded in 1983 there was little information available about the illness now known as ME/CFS. And, of course, Long COVID did not yet exist.  Other state organizations were formed, but it wasn’t until recently that organizations with nationwide advocacy and research agendas appeared. MassME maintains constructive and mutually beneficial relationships with these organizations.

• The SolveME/CFS Initiative (Solve ME) serves as a catalyst for research into diagnostics and treatments for ME/CFS and other post-infectious illnesses. SolveME funds innovative research through grants, gathers data through a patient registry and biobank, and works to improve medical education about these illnesses. MassME works with SolveME on legislative advocacy, and participates the annual advocacy week on Capitol Hill organized by SolveME.
• Open Medicine Foundation (OMF) directly funds medical research to find effective treatments and diagnostic markers for chronic complex illnesses, with a focus on ME/CFS. MassME has collaborated with OMF on fundraising and medical education events, and works with the Harvard ME/CFS Collaboration to provide patient input and support.
• The Long COVID Alliance is a patient-centered network of advocates, scientists, healthcare providers, and experts pooling knowledge and resources to educate policy makers and accelerate research into post-viral illnesses. MassME was one of the founding partner organizations of the Long COVID Alliance.
• Bateman Horne Center is a non-profit Center for Excellence dedicated to research, clinical care, and patient/provider education. Based on the dedicated and foundational work of Dr. Lucinda Bateman, the Center is dedicated to improving lives of those impacted by ME/CFS, Fibromyalgia, post-viral syndromes, and associated comorbidities. MassME has participated in medical education events alongside BHC, and has partnered with them in patient support programs.
• #MEAction Network is an international advocacy organization founded by Jennifer Brea (producer of the film Unrest). #MEAction fights for recognition, education, and research, through grassroots organizing and distributed and networked learning. MassME participates in #MEAction’s annual #MillionsMissing event, and has hosted multiple screenings of Unrest for healthcare students, public health professionals, and the general public.