#MillionsMissing Protest in 12 Locations all Over the World

On Wednesday, May 25, ME/CFS patients, caregivers and advocates in nine cities around the world gathered for a global day of action to demand equal treatment and an end to the stigma of the diagnosis of ME/CFS.

Protesters demonstrated in front of Department of Health and Human Services offices in Washington D.C., Atlanta, Boston, Dallas, San Francisco, and Seattle to demand Secretary of Health Sylvia Burwell take leadership to end thirty years of scientific and medical neglect.  A #MillionsMissing protest was held in Raleigh, North Carolina, as well.


San Franscisco Best Clothesline

Passers-by engage with those who have been ‘hung out to dry’ in San Francisco. Photo credit Jack Owick


A #MillionsMissing protest was held in London at the Department in Health.  Over a hundred protested, approximately 350 pairs of shoes were on display, and several officials stopped to speak to those in the crowd.


London - speaking to officials (Hilary Benn) att. Robert Tanczos

L.A. Cooper, founder of Change for M.E. Change For Us, speaks to Hilary Benn MP, Shadow Foreign Secretary. Photo credit Iona Fabian.


In Melbourne, the display of shoes outside of the State Library of Victoria was impressive:


Melbourne Shoes


The Canadian virtual protest sent over 500 emails to MPs and PM Justin Trudeau.  The virtual protest has generated over 10,000 tweets with the hashtag #MillionsMissing, which trended on Facebook and Twitter.

There were even some unannounced #MillionsMissing displays in Ottawa and in the Netherlands.

“It was so amazing to see the outpouring of support from patients, caregivers, family and friends,” said Stacy Hodges, a patient from North Carolina and organizer of the Washington, DC protest. “We are fed up and we demand equal treatment. Now is our time.”


D.C. pic 1

The D.C. protestors among the empty shoes of hundreds of patients


ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a neuroimmune illness characterized by exhaustion unrelieved by sleep, neurological and immune dysfunction, and an exacerbation of symptoms on mental or physical exertion.  Patients with severe ME/CFS are more disabled than those with congestive heart failure, multiple sclerosis and end-stage renal disease, according to the Institute of Medicine.

ME/CFS afflicts 1-2.5 million Americans and costs the US $24 billion in lost productivity, yet receives only $5 per patient per year in the US… and only pennies per patient in the UK. By comparison, multiple sclerosis patients in the US receive $100 per year, and HIV/AIDS, $3000 per year.


Sparkling Red Shoes RIP Seattle

In Seattle, an abandoned pair of shoes; RIP, Amberlin Wu.


“It didn’t take me very long to figure out that we are repeating history with ME,” said Terri Wilder, an ME/CFS patient and member of AIDS advocacy organization, ACT UP New York. “I’m having déjà vu. AIDS patients were made invisible and their real-world knowledge about the changes that needed to be made to end the crisis was ignored.”

The US protesters plan to deliver a list of demands to Secretary of Health Sylvia Burwell and regional offices including equal research funding and medical education. “There is no funding for research and the disease is taught in only 5% of medical schools,” said Jennifer Brea, co-founder of the #MEAction advocacy group, which is organizing the protests. “The Secretary’s office needs to take leadership.”

“Today is only the beginning,” Brea, said. “We are going to keep fighting until we get what we need and deserve.”


Ron Davis. Janet Dafoe. Whitney Pic San Franscico

Ron Davis and Janet Dafoe talk about their son, Whitney, who has severe ME. San Francisco, photo credit Jack Owicki.

To see some more of the incredible images from the protest, check out the #MillionsMissing on Twitter and Facebook.  Keep the hashtag alive by liking, re-tweeting, and continuing to make your own posts on social media.  Keep working hard to ensure the #MillionsMissing are visible!  Continue reaching out to local and national press, and direct them to the #MillionsMissing webpage for our press releases by region.

Twitter: #MillionsMissing

Facebook: #MillionsMissing


This was a HUGE protest!  If there is information or a photo you would like to be in this article, send it to editor@meaction.net and I will add it straightaway! 

Written by Jen Brea and Jaime Seltzer

Categories: Advocacy, All News, Australia, Awareness, Canada, Country, Featured news, Global, Ireland, Norway, Politics, United Kingdom, United States

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6 comments on “#MillionsMissing Protest in 12 Locations all Over the World
  1. Barbara from Germany says:

    Dear Jen Brea (and all the other brave organizers of this fantastic movement)!
    I’m not on Facebook, so I can’t pose comments, likes etc. there.
    So I try this way to pronounce my admiration and my thankfulness.
    Your unbelievable perseverance and strength ( though you’re ill yourselves), your devotion to the cause of pwme, working restless, fast and furiously for the community in the whole world, is incredible!
    I’ m from Germany, my daughter is severly ill with ME. I sign each petition I can, I sent Forgotten plague to an unknown Senator of Nebraska, sent a letter to an australian politician and so on!
    We all must fight together.. Thank You for all you do! And please ignore all those stupid, who criticize you!

    1. Alex says:

      And not to forget: thank you for all YOU do!!!

  2. Carol Lefelt says:

    This was a great organized effort by many dedicated and talented people. Where was the mainstream media coverage?

  3. MC says:

    Thank you all so much, Jen, Jaime and everyone else who made this possible! Great work!

  4. Marjorie says:

    Thank you to everyone who was able to go in person.

    I just went to https://meaction.smugmug.com/Millions-Missing to look at the photos. Some I had seen on twitter but many were new.

    Is there a contact where we can send photos to be added to the photo collection? My niece and her husband went to the Seattle protest and took a couple of photos of my shoes.


    1. #ME Action says:

      Yes! Please email photos to millionsmissing@meaction.net

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