Join Our Values and Policy Initiative


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On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy,” an ambitious, six-month initiative to learn, engage, debate and ultimately devise the core tenets of our global movement.

When we first asked the community last November what ground they wanted this initiative to cover, you cited these as the most important outcomes: disease definition and how best to educate health providers; advocacy tactics; devising concrete policy positions; shared values; and building a more harmonious community. When it came to the most important values for our movement, you said accessibility, participation, inclusion, transparency, and unity were key. You also asked for better clarity on #MEAction and clearer messaging from us.

Values & Policy

Ever since, we have been working to make progress on all of these dimensions. This Values & Policy initiative, devised to be participatory and deliberative, will be a core part of achieving these outcomes. 

Over the next six months, we’ll be rolling out a series of articles and think pieces written by staff and community members to address the following themes: participatory activism, civil disagreement & respect, inside/outside strategies, building coalitions, accessibility & activism, inclusion, diversity, equity, and how we define our community and our disease. We’ll be igniting conversations on social media, hosting community calls, and deploying a series of surveys. All this will culminate in a statement of principles and values as well as a formal policy platform. (You can follow the timeline and each of our planned pieces on this landing page.)

Greater participation & clarity

However, Values & Policy is just one part of achieving these outcomes. In order to increase our organization’s transparency and make it easier and clearer than ever how to engage, participate in and support the work, we’ll also be rolling out the following tools and initiatives in the coming year:

  • A new mission and vision statement
  • A formal membership program
  • An #MEAction International Community Advisory Board
  • A new website 
  • A clear onboarding and training process for new members and volunteers

We want to formalize membership in #MEAction and engage members in new ways, including meeting quarterly to keep members up-to-date on our wins, setbacks, and plans for the future, as well as to discuss and participate in guiding the direction of the organization, not just through this Values & Policy initiative, but beyond. (Anyone can participate in this Values & Policy initiative, whether or not they are a member of #MEAction.)

#MEAction International’s Community Advisory Board, which we aim to launch next year, will comprise leaders from across #MEAction’s network: US state leaders, #MillionsMissing organizers, Facebook moderators and members who reflect the diversity of our movement. This group will help us realize our shared values at every level of the organization and engage with staff in thinking about how best to scale and grow the impact of our work.

Finally, our new website design, a volunteer onboarding process, training, and our new mission and vision statement will make clearer our theory of change, our vision for the movement and future we are building, and how you can participate in helping us realize that vision.

Who and what is #MEAction?

But first, I want to start with what is already clear, and that is a new statement of our mission and vision. We are igniting a global revolution in ME care. The kind of organizing and impact we envision will not happen overnight. It will take a robust organization and a community of thousands. It will take all of us.

The mission of #MEAction International, our US-registered, 501(c)(3) organization, is to build a global movement to fight for recognition, education and research so that one day, all people with ME will have access to compassionate, effective care. Our board and staff work every day to further that mission.

That organization 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 network includes #MEAction USA, #MEAction UK, and #MEAction Scotland, our nine US state chapters, and thousands of individual advocates, organized in over 122 Slack and Facebook groups. This network of activists is the leadership and rocket fuel behind all that we have been able to achieve.

Our philosophy—what makes us different from most health advocacy organizations in any disease—is grounded in grassroots empowerment; distributed, networked learning; accessibility; diversity and inclusion; and innovation. 

We are building all this to achieve three goals––recognition, a robust ecosystem of research & care, and a thriving community—through our work of outreach, organizing, advocacy, educating the medical community, and cultivating new knowledge.

And so when we talk about our Values & Policy initiative, its purpose is to devise a statement of principles and values that will guide and govern the entire network. (Our 501(c)(3) organization’s mission and philosophy will remain unchanged). At the end, we’ll also have three policy platforms: one for #MEAction USA, one for #MEAction UK, and one for #MEAction Scotland, which each may differ in scope and positions, depending on local needs.

With that, I hope you’ll get started by first reading our new mission and vision in full:

[maxbutton id=”17″ url=”” text=”What is #MEAction” ]


and acquainting yourself with our Values & Policy initiative via our new landing page:

[maxbutton id=”17″ url=”” text=”Visit Values & Policy” ]


It is going to be a lot of work but with your participation and engagement, I believe we’ll grow to better understand our community’s hopes, goals and needs, connect with what unites us, and clarify how we will work and grow this movement, together.


Jennifer Brea
Executive Director

On behalf of #MEAction’s board and staff




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1 thought on “Join Our Values and Policy Initiative”

  1. Thank you so much for fostering an inclusive community and strengthening grassroots organizing through this initiative! I just caught up on all the editorials, and am feeling really inspired by them, as well as eager to become a more active part of this movement, as my body and mind allow. I love the editorials initiative particular as a level-setting tool for community values and work approach. Thank you, thank you, thank you! I have been feeling especially down about being a sick and unemployed 32 year old and am very heartened by this work – by what this community has done and the potential it has as a change-maker moving forward.

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