BEFORE May 12:
ON May 12th
Homebound patients can connect with each another, share experiences, and find out what is happening around the world. On-the-ground protesters can call in to connect homebound patients to their local events. (In the public rooms, they may even ask someone to speak to the crowd!)
Hashtags: #MillionsMissing / #CanYouSeeMENow?
If in the US, also tag @NIH and @NIHDirector. If in the UK, tag @Jeremy_Hunt (Twitter) @jeremyhuntsws (Facebook).
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) and use the above hashtags and tags.
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 above tags!
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. Upload directly to Twitter or Facebook, or Facebook Live it. You can also email email@example.com with a link to your video, or send it to us via WeTransfer, Google Drive or Dropbox.
If in the US, please speak directly to Francis Collins, director of the NIH. If in the UK, you can speak to Jeremy Hunt, Secretary of State for Health and Social Care.
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.
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
Please remove PACE material and harmful Graded Exercise Therapy recommendations from the RACGP HANDI guide for Chronic Fatigue Syndrome. See bit.ly/PEM-GETPrimer and bit.ly/2I8N09w #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 bit.ly/2jzKE5A#MillionsMissing #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 bit.ly/2jzKE5A#MillionsMissing #mecfs @JanePrentice_MP