Announcing #MillionsMissing 2019! Join us!

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We are thrilled to announce #MillionsMissing 2019!

This May, we will take to the streets – or demonstrate from our beds – to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME).

We’ve made important strides in making our voices heard before our government leaders across the world, but we have so much more to do. More than ever, we need to grow our movement and remain persistent in our demands for large-scale change.

Now is the time to take our fighting spirit and creativity to the streets once more. Now is the time to spark a groundswell of support from the public for ME. We must send a message to our government representatives that we are here, we are fighting for our lives, and we are not going away. We demand equitable research funding and care, accurate medical education and an end to the harm and stigma.  

Last year was our largest global protest ever with 100 cities around the world demonstrating, and even more participating virtually. Our story was told 79 times by the press around the world. And this year will be even larger.  

This year, #MillionsMissing will take place over the course of an entire week from Sunday, May 5 to Sunday, May 12 with key events on Sunday, May 12th. How will you participate? Organize a large public demonstration. Gather a small group in a park or at your home. Participate from your bed via social media. Join your local demonstration.  

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Each demonstration should decide what targets (it can be general or specific) will be most impactful for drawing attention at your location. We aren’t dictating specific targets this year by country as we did in previous years. In the UK and Scotland, the #MillionsMissing campaign will focus on increasing funding for biomedical research into the diagnosis and treatment of ME.

Last year’s #MillionsMissing movement led to a meeting with the director of the National Institutes of Health in the US to discuss implementing a strategic plan for people with ME. From the meeting, it was clear that NIH is only comfortable with an incremental approach, which is all the more reason that we must continue to fight publicly for our demand to accelerate research for ME now.

The advocacy work of #MEAction, local activists and other ME charities in conjunction with the momentum from #MillionsMissing has led to important developments across the world, but we must continue to show persistence in our demands.

In the UK, 40 MPs voted on a motion last month to increase biomedical funding and suspend graded exercise therapy, among other actions. In Australia, an MP has tabled a motion for ME in Parliament, and recommendations on clinical education and guidelines and research priorities for ME are in the process of being drafted. 

In Denmark, Finland and Norway, ME communities are fighting to stop their health leaders from issuing guidelines for ME based on a biopsychosocial model that ignores the biomedical realities – and international scientific consensus – of the disease. Germany recently softened its position of ME as a biopsychosocial disease, but continues to recommend graded exercise and talk therapy as treatment.  

Make a Visual Impact

A key goal for 2019 is to use creative visuals to draw attention to our movement.

We encourage each demonstration to undertake creative visual endeavors as we have seen in past years. This is not only important for attracting attention on the day, but also to use as compelling images for our advocacy work throughout the year.

Displaying empty shoes has always been a unifying and dramatic image to represent the millions missing from our lives due to the neglect of this disease. We encourage you to incorporate this visual into your event or social media demonstration this year, in addition to using other dramatic visuals.

Last year, Scotland staged a lie-down, Berlin unraveled a banner for ME at a football game, New York made themselves invisible with blue gauze, and Sheffield showed up in red wings. On social media, a woman took a headshot buried in a pool of pill bottles.

Since the movement lives on through social media and in communications with our representatives and government officials, remember that high-quality photography and videography is key!! We encourage you to hire a professional photographer or videographer, or to find a professional who can volunteer their time.

Find Allies Now!

#MillionsMissing is a key opportunity to build partnerships with allies in our communities. Think of the groups in your hometown who may be willing to show up to support our fight. It may be disability rights groups, religious groups, women’s rights groups, philanthropic groups or other organizations fighting for justice, health equality and basic human rights.

Also, think about how you can incorporate your family and friends into helping with the logistics of organizing the demonstration. Now, is the time to make that invitation to the people in our lives to join the fight.

Fundraise for #MEAction

Take this opportunity to set up a fundraiser for #MEAction to build and grow our advocacy work. There is so much more work to be done. We will provide a platform to make this easy to set up. Check back soon. More details to come.

Tell your Story

We plan to connect our story to larger themes that the public is discussing right now, including healthcare inequality, poverty, disability rights, issues of social justice, and the right to be believed for our experience. Think about the story that you want to tell during #MillionsMissing.  

Are you comfortable recording your story, and sharing parts of it on social media? Are you willing to reach out to the press as one of the #MillionsMissing? What are some of the themes running through your experience that might connect you to larger narratives being discussed by the general public right now?

#MEAction plans to collect stories from people with ME around the world, and help frame them thematically in a way that is visually arresting, honest and media savvy.

There are so many layers to our story. We are neglected. We are harmed. We have not been believed. We live with “invisible” disabilities and sometimes do not “look” sick.

We are recently sick. We have suffered – and fought – for many decades. We are children, in our prime and seniors. We have lost so many freedoms: to walk, work, speak, read, spend time with our loved ones, go out into the sunshine.

And, yet, we are here. We are becoming strong together. We are telling our story. We are fighting for our lives. We will find answers and gain compassion. What is your story with ME that you want to tell the world?

I am a parent with ME

I am a child with ME

I am a senior with ME

I am a doctor with ME

I am a first responder with ME

I am an artist with ME  

I am homeless with ME

Find Support

If this is your first time or you want to go bigger this year, please get in touch with the community to share ideas and for logistical advice. Join the conversation on our #MillionsMissing Facebook group. We will also be hosting calls led by leaders of past demonstrations. Stay tuned! Email [email protected] with questions.

Stay Tuned!

We will be releasing our toolkit shortly that will include a step-by-step guide on organizing a protest or doing a virtual action, as well as links to posters, press materials, flyers and tips on photography.

Now is the time to make ourselves visible. Join us!

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4 thoughts on “Announcing #MillionsMissing 2019! Join us!”

  1. May 12th is Mother’s Day in the US. That will dominate the news cycle. Allies will have family commitments. Consider moving events to May 11th?

  2. The weekend of Mother’s Day is horrible to host events and to try to get speakers to come and people to show up. Consider doing this the weekend of May 4th/5th. Thank you!

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