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About Us

Igniting a global revolution in ME care

Our Mission and Vision

We are building a global movement to fight for recognition, education and research so that one day, all people with myalgic encephalomyelitis (ME) will have access to compassionate, effective care.

Who We Are

We are an international organization that develops and supports a network of country affiliates, affinity groups, city, state, regional and other local chapters, and individual advocates. We are people with ME, caregivers, family members and allies.

Our Philosophy

Grassroots empowerment: We provide tools and training to advocates and embed them in local networks so that we can all 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 learnings and best practices. When we act locally and internationally, we become an unstoppable force.

Accessibility: 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 are building an inclusive community comprised 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 at least half of our board and volunteers.

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

Our Goals

Recognition: ME is universally known as a serious disease that devastates 15-30 million people and their families worldwide and merits massive investments in research and education.

Robust ecosystem of research & care: ME has equitable funding for research and a vigorous, engaged scientific field.The medical system is equipped to effectively diagnose and care for people with ME.

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

Our Work

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

Organizing: 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. 

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

Medical education: We’re engaging doctors, nurses and other health professionals through scholarships and community-powered medical education initiatives.

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

Our Organization

#MEAction’s staff runs our headquarters, based in Los Angeles. They help to set strategies, provide project management to our volunteer projects, provide tools and training, and supports our activists, organizers, US state leaders and national affiliates.

#MEAction USA is a collaboration between #MEAction International’s staff and volunteer teams, organized into three committees: Congress, NIH and CDC. In addition, volunteers work as part of nine #MEAction USA State Chapters (Arizona, California, Colorado, Florida, Georgia, New York, Pennsylvania, Tennessee, and Texas) and 50 #MEAction USA State Facebook Groups.

#MEAction UK is a collaboration between #MEAction International’s staff and volunteer team.

#MEAction Scotland is a collaboration between #MEAction International’s staff and Scottish volunteer team.