Covid-19 Resources for People with ME


Virtual Protest 2018

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 the MEAction letter to Francis Collins (Global)
    3. Sign these petitions:  NIH petition (US only) | Global petition | Scottish petition (anyone can sign). Australians: join the letter writing campaign! Instructions here.
    4. Invite your friends or family to join a demonstration near them. Find details and links to all the events here and use this graphic of all protests.
    5. 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 our US virtual meetup and a live, 24-hour, Auckland to Honolulu video call.

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!)

  • RSVP here for the two-hour, moderated US meetup (May 12th, 4-6pm EDT)
  • And RSVP here for the 24-hour global meetup (May 12th, 11:00 AM NZST to May 13th, 11AM NZST – basically, hop on anytime!)
2) Join the #MillionsMissing on Social Media

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 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.

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

ScotlandTweet at Shona Robison, Cabinet Secretary for Health and Sport:
‪‪#MillionsMissingScotland demands that the Scottish Government invests in biomedical research which reflects the disease burden and provides Scottish health professionals with appropriate education and training. @ShonaRobison @meactionscot #MillionsMissing #canyouseeMEnow  ‬


Australia tweets: 

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