How to Protest Virtually with the #MillionsMissing on May 12th

BEFORE May 12:

    1. Ask Congress to support people with ME. Using our one-click software, it’ll only take a few seconds. Contact Congress now. (US only)
    2. Sign these petitions:  NIH petition (US only) | Global petition | Scottish petition (anyone can sign)
    3. Invite your friends or family to join a demonstration near them. Find details and links to all the events here.
    4. Advertise the #MillionsMissing on your social media network by sharing sample posts from the social media toolkit here or create your own using these social graphics.

ON May 12th

1) Join the #MillionsMissing on Social Media

a) Put your shoes outside with a note
On May 12th, take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway with a note about what these shoes represent now that you are ill with Myalgic Encephalomyelitis. Take a photo and post it on social media (Twitter, Facebook, Instagram, etc). Include these hashtags#MillionsMissing | #CanYouSeeMENow?
Anyone can participate, whether you are a patient or an ally expressing solidarity. You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: “I cannot walk to the end of my driveway” or “My brother should be here.”

b) Show Your Face
Post a selfie from your bed or home to show that your are one of the millions who are missing due to ME.  You can print one of our posters , or create your own poster or sign. Don’t forget to include that hashtag: #MillionsMissing!

c) Turn the camera on yourself.
Say a little bit about yourself, and explain what you are demanding from your government. Keep it short, sweet and to-the-point. Please email [email protected] with a link to your video, or send it to us via WeTransfer.
d) Re-share photos from other protests, and from the #MillionsMissing Instagram with your followers on social media. Include the hashtag #MillionsMissing.
e) Add the #MillionsMissing filter to your social media profile photo using the #MissingMillions Twibbon.

2) Join a 24-hour virtual call

Join a live, 24-hour call throughout the day! Call in to hear from organizers about how their protests are going, and to connect with other activists who are protesting from their homes, as well. Join the call.

3) Tweet at your government officials

Tweet the demands and messages that your country is making to your health officials and government representatives. Here are some example tweets:
US – Tweet at NIH:
NIH’s ramp-up for ME/CFS is too slow, too small. #MillionsMissing demand adequate funding for research and clinical trials now. @NIHDirector
UK – Tweet at Jeremy Hunt 
The UK has caused millions to be missing for too long. #MillionsMissing demand funding for biomedical research & education. Stop the neglect! @Jeremy_Hunt #CanyouseeMEnow #PwME
Australia – Join the letter writing campaign! Instructions here.
Tweets for Australia: 

Dr Bastian Seidel (RACGP President)
Please remove PACE material and harmful Graded Exercise Therapy recommendations from the RACGP HANDI guide for Chronic Fatigue Syndrome. See and #MillionsMissing #mecfs @DrBastianSeidel
Dan Tehan (Minister for Social Services)
Australians with ME/CFS are missing from the NDIS. Please add ME/CFS to List B of approved conditions. See #mecfs @DanTehanWannon
Jane Prentice (Assistant Minister for Social Services and Disability Services)
Australians with ME/CFS are missing from the NDIS. Please add ME/CFS to List B of approved conditions. See #mecfs @JanePrentice_MP



3 thoughts on “How to Protest Virtually with the #MillionsMissing on May 12th”

  1. FYI – I solved my own battle with ME over 25 years ago by having the mercury fillings in my teeth replaced. Changed my life. Seriously urge anyone with mercury filling to investigate this solution for them. Before that I had classic ME symptoms: chronic fatigue; days I couldn’t get out of bed; aching joints; candida infections; painful spots on my face; excruciating stomach pain because of lactose sensitivity. Although I am still careful with my diet, it matters less if I make a mistake. And best of all, my energy did return. I can now walk miles without pain. My nausea and stomach pains have gone. My ME was worse when I was in my twenties. Am now in my 60s and v happy with life. There is hope!

    1. I’m so sorry that you suffered for so long from what sounds to be mercury poisoning. Many people are falsely diagnosed and there are so many different illnesses which do cause many of the same awful and debilitating symptoms of myalgic encephalomyelitis (ME).
      However, ME is a real condition in and of itself. I fully understand that you mean nothing but good by attempting to share information which made a huge difference in your life. The problem however is that at the same time, inadvertently, you are undermining the many MILLIONS of people who really do have ME.
      I’m not talking about misdiagnoses, I’m referring to people who truly have this condition. This condition which
      does need research,
      does need funding in order for there to be research,
      does need treatments,
      does need awareness so that the public doesn’t misunderstand
      does need the medical community to be educated about it,
      does need to be brought to the light of day so people can see what it really is vs what it is NOT;
      It is NOT merely extreme exhaustion…
      I would LOVE for you to help us fight for advocacy, we could really use all of the help we can get. I trust that you have empathy for others who do fight any sort of chronic illness and/or chronic pain battles. I would love if you would read a little further and read the true definition of the illness as put together by a team of several ME specialists, all around the globe, who conferred together and came to a concensus on what symptoms are present in people with ME. I have a feeling that you might be able to see things a little differently and recognize that it’s important to be able to have much better descriptives when classifying anything scientifically/biologically. There’s a huge difference between birds, butterflies and dragonflies, yet they all have wings.
      I do believe there is hope, however without proper understanding, it seems quite faint. People continue to think all sorts of false things that amount to not doing anything to actively search for something which has yet to be found, but anybody at all. This illness has been around for almost a century and STILL we’ve done next to nothing to try to treat and eliminate it. Won’t you please help now that you’ve found more energy? It would be incredible if you could share a story of how YOU were misinformed and how desperately others need to see the truth.
      Hugs and all the best to you sweetness!

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