#MEAction is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis.
MEAction is not structured like a traditional advocacy organization or patients’ association. We are primarily a platform, designed to empower patient advocates and organizations, wherever they might be, with the technological tools and training to do what they are already doing – better.
Myalgic Encephalomyelitis (ME)*, commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It is often triggered by an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
As we grow, we plan to implement more tools to support users to take action. For more, see our development plan.
An “action” is any step proactively taken toward the future that invites the participation and support of other members of the community for its success. In other words, an action can be almost anything: a crowdfunding effort, a petition, an event, a social media campaign (a meme, a thunderclap, a blog bomb, a viral video). It can even be a research study. An action can be hosted on #MEAction or on any site on the web. It can be located in the physical world and in the virtual one.
Both #MEAction-hosted actions and actions hosted on other websites can be submitted for promotion throughout the network. Click here to learn more.
A petition is an individual petition (as contrasted with a petition campaign). Anyone can start an individual petition at any time.
A petition campaign is an overarching effort comprising many “sub-petitions.” For example, a petition campaign to include ME in medical school curricula might include many sub-petitions targeted toward specific institutions. A petition campaign to Congress or Parliament might include sub-petitions targeting specific members. At the end of the signing period, the sub-petitions can be delivered to each individual or institutional target, as can the overarching campaign. The overarching campaign aggregates all of the sub-petition signatures.
Petition campaigns can only be initiated by admins. If you are interested in organizing a petition campaign, you can request to do so by filling out this form. Remember that you can always elect to start an individual petition at any time.
Events can be anything you want them to be: sit-ins, protests, fundraisers, book readings, movie screenings, or lectures.
To see what events are happening in your area or to organize you own, individual event, visit our events page.
Event campaigns are similar to petition campaigns: they are an overarching umbrella for individual events.
So for example, if one wanted to organize a day of protests around the world, you could start an event campaign aimed at a specific date, and then invite users to create individual events, or instances of that protest in their local community. Another example might be a month of film screenings. A year of educational programming.
Event campaigns can only be initiated by site admins. If you are interested in organizing an event campaign, you can request to do so by filling out this form.
You can visit our help desk to submit a support ticket.
Our aim is to empower a global community that can act on both international and local scales. As the network grows, and once we have fine-tuned the design and function of the core website, we plan to offer additional tools that allow users to find content specific to their country and more effective reach audiences locally:
We welcome anyone who identifies with the diagnosis of Myalgic Encephalomyelitis (ME) and the core mission of this platform. However, we also recognize that there are many paradigms for viewing this illness, dual diagnoses and forms of self-identification. We believe in every patient’s right to define themselves.
As a community organizing platform, #MEAction Platform will likely hold few formal views or policy positions. Our aim is to empower the broadest possible swathe of the community and to reflect its diversity.
Local #MEAction affiliates, however, can take formal policy positions achieved through democratic processes. Learn more about our structure.
Since #MEAction is all about empowering all of us to fight for what we believe and value, our approach is an open and ecumenical one. We want to channel our energies toward the impact we can have on the outside world, with the understanding that we may never speak in a single voice, but can grow in reach and influence by empowering a range of voices.
Given this approach, it is especially important that in any action, advocates are clear about their goals, strategies, and if important to the action, their definition of the illness. This will help visitors to the site choose which projects to join or support. While we believe that principled critique and disagreement is an important part of the work we all do, we want to support a culture, primarily, of creation and action.
The content of #MEAction is entirely community-led and community-driven. We hope that over time, so too can be the governance of the website and the organization as a whole. Our ultimate goal is to build a vibrant, self-governing community.
#MEAction is primarily a grassroots, volunteer organization. Its board is not compensated. Funds go towards supporting a small, part-time staff and the fees associated with running and maintaining the platform and its many tools. Learn more.