Join the #MillionsMissing – from your bed, your home, a local park

#MillionsMissing is fast approaching on May 12th, and we are thrilled to see cities across the world planning demonstrations with bullhorns and speeches. But, we want to emphasize that #MillionsMissing is a movement of “can-you-see-ME-now” at any level.
We strongly encourage people who cannot leave their homes to join the fight from your bed as one person; or from your home as a few people; or from your community as a gathering of patients, friends, family and allies, along with the cities that plan to organize a large event.
In today’s world of social media, a protest doesn’t have to happen in one place at one point in time for the world to take notice. We are linking ourselves through our hashtags of #MillionsMissing and #CanYouSeeMEnow with the same goal of demanding justice from our governments.
Here is an interesting example of how people wanting to participate in a movement who were unable to go to the street, took action from their homes and got press coverage for it in a major national news publication.
Don’t wait for someone else to get the ball rolling. Help us connect you. If you are interested in seeing an event happen in your city but don’t have the bandwidth to lead the charge, go ahead and set up an event on Facebook, and we will help connect you with other people interested in participating in an event in the same area.

Get the conversation started; it might turn out that your event ends up being a simple affair of people gathering in a public space with a few posters, connecting with one another and dispersing after an hour. That’s fantastic! Coming together in a public place to show yourself as part of the #MillionsMissing demanding health equity and documenting it with a photo, is wonderful.
Remember, this is not only about demanding justice; it is also about building community with other people with ME, family, friends and allies.
Learn more about undertaking an action. See our step-by-step guide. For more information check out our website, or email [email protected].
Here’s how to participate fully in #MillionsMissing as one person or a small gathering:

  1. Register your intent to participate. Even if you are only one person with plans to take action from your home, we want to show who is participating and where so that we can point to the widespread nature of this disease and say to our governments, “Look, we had people from every one of these towns show up.”

    In the United States, our goal is to have participation from every 50 states to show the National Institutes of Health the widespread demand for more research funding. We will demand a meeting with the NIH director, Francis Collins, to address the issue of research funding, where we will deliver a compilation of the images of people taking a stand, along with the NIH petition, which we encourage you to sign and share widely.

  2. Show your face. We are encouraging participants to take a photo of themselves this year to show the number of people afflicted with ME, similar to photo from the BedFest campaign below. (Of course, if you’d prefer to remain anonymous, putting out your shoes and taking a photo is perfectly fine – see next point.)This year, we encourage people to hold up one of the posters we’ve provided, or to make your own sign. In your sign consider including:-  A message directed at the target of your country’s protest (in the U.S., that would be NIH director, Francis Collins);
    – Your location – #CanYouSeeMEnow in Wilmington, North Carolina;
    – Our hashtags – #CanYouSeeMEnow  and #MillionsMissing
  3.  Tell your story. Put out your shoes with a note that explains what you are missing from your life due to this disease.
  4. Tell us where you are located. Again, we want to show our governments that this disease affects people in every part of the country. We encourage you to show the world where you are, using one of our editable posters (coming soon!) that can be edited to show your location, such as:
    #CanYouSeeMEnow from Galveston, Texas;
    #CanYouSeeMEnow from Gwynedd, Wales;
    #CanYouSeeMEnow from Johannesburg, South Africa.
  5. Deliver a unified message. Each country will have its own message to send.
    In the United States, we are targeting Francis Collins, director of the National Institutes of Medicine, who oversees the national research budget for diseases. We have global and local posters that you can use to help send that message.


  6. Don’t forget to share on social media. Use the hashtags #MillionsMissing and #CanYouSeeMEnow. Check out our tips for posting on social media.



8 thoughts on “Join the #MillionsMissing – from your bed, your home, a local park”

  1. Hello, I’m trying to use the ‘posters’ link but keep getting an error. Can someone check this out please? Thanks. And HUGE thanks too for all that you’re doing to raise awareness! 🙂

    1. H,
      There is not a public action planned for Paris yet. If you’re interested in starting one you should sign-up at
      There are public actions planned for Châteaubourg on the 12th and 27th of May:
      If you want to get connected to other activists in France I recommend joining the #MEAction France group (we only recently launched it):
      You can also contact activists at this independently-run facebook page:
      Hope this helps! Other questions? Email [email protected]

  2. Amy Keeton-Conley

    Hi, I need help. I keep getting an ‘error’ message when I click on the ‘posters’ link. I turned off my adblock and tried again but it didn’t help. It looks like I’m not the only one having this problem. Please let me know what to do. Thanks!

      1. Hello,
        Unfortunately nothing happened when I clicked on new the link. I tried more than once to be sure. I’ll keep trying. Thank you anyway though!

  3. Where can I find information about the protest in Bristol on 12th May? I was sent an email about it, but can’t find it now and cannot find it on the millionsmissing website. Thanks

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