We are an international organization that works to develop and support a global network of individual advocates, local and affinity groups, city and state chapters, and country affiliates. We are people with ME, caregivers, family members and allies.


We’re building a global movement to fight for recognition, education, and research so that, one day, all people with ME will have support and access to compassionate and effective care.

our foundations

Grassroots Organizing

We provide tools, train advocates, and embed them in networks so that all members can become effective participants, educators and leaders in the fight for long-term, strategic change. When people with ME and their allies are empowered to take action, the impact of our work multiplies.

Distributed & Networked Learning

We value local knowledge and initiative. By embedding on-the-ground organizers in interdependent, national and international networks, we can share tools, learnings and best practices. When we act locally and internationally, we become an unstoppable force.


We use the latest in community organizing and political advocacy technology to mobilize tens of thousands to action, even from their homes and bedrooms. Everyone, no matter their disability, can contribute to changing lives and building a better future.

Diversity & Inclusion

We aim to build a community of diverse gender, sexual orientation, racial, ethnic, religious, cultural, political, geographic and socioeconomic backgrounds. We actively involve key volunteers and the broader community in setting the direction of #MEAction. People with ME comprise the majority of our board, volunteers, and staff.


The obstacles we face are enormous. The status quo has persisted for decades. Because of this, we not only need to effectively advocate within the current system, we have to get creative, experiment, learn, and iterate to change the state of play. We endeavor to push the boundaries of what is possible.

our goals


That ME is universally known as a serious, organic disease that devastates the lives of millions around the world; that there is no effective care; and that there will be no effective care without massive investment in research and education. 

Robust ecosystem of research & care

That there is equitable funding for research, a vigorous scientific field, and that the medical system is equipped to effectively diagnose and care for people with ME.

Thriving community

That the ME community is organized, mobilized and reflects the demographics of those affected; that people with ME have access to the education and resources they need to advocate for themselves and others; and that they are embedded in strong networks of support and friendship.

our work

Cultivating new knowledge

We’re motivating a new generation of researchers to join the field through our outreach and fellowship programs. Our community-based research initiatives and white papers put the patient experience at the center of science and policy


We’re developing strategies, cultivating expertise, and mobilizing patients and allies to engage elected leaders and health officials. We’re demanding our governments make substantial and strategic investments.


We’re using technology to create spaces, events, trainings and collaborations that bring people together, foster connection, harness our collective creativity and knowledge, and develop leaders.


We’re engaging press and developing compelling multimedia education tools.

Medical education

We’re engaging doctors, nurses and other health professionals through scholarships and community-powered medical education initiatives so that we can encourage empathetic, knowledgeable care for all.

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