By Erica Verrillo
On May 25, 2016, protesters all around the globe gathered to demand greater recognition and research funding for ME/CFS. Simultaneous protests were held in Melbourne, Australia; London, England; Belfast, Ireland, Ottawa, Canada; and in Boston, Washington, DC, Seattle, San Francisco, Dallas, Raleigh, Atlanta. and Philadelphia in the U.S. It was the largest protest ever held for this disease, involving thousands of participants worldwide.
The Millions Missing protest was organized by MEAction and coordinated by a group of dedicated advocates in order to highlight the long neglect of patients with ME and CFS. Millions missing represents the missing millions of dollars of research funding that should have been spent to find a cause and a cure. Millions missing also represents the millions of people who are missing their careers, their families, their friends, and their lives due to the ravages of a disease that can disable a sufferer for decades.
In most of these demonstrations, a display of shoes, sometimes in the hundreds, was laid out to symbolize missing patients who, due to illness, could not protest in person. Virtual demonstrations – pictures of shoes placed in driveways, on doorsteps, and on walkways accompanied by personal notes– were held in tandem. The virtual protest generated over 10,000 tweets with the hashtag #MillionsMissing as well as thousands of posts on Facebook.
Local organizers took advantage of this event to schedule meetings with HHS officials as well as their representatives. Jennifer Brea, founder of #MEAction, met with Senator Cory Booker's staff (Dem NJ), and patient advocate Sonya Heller Iray met with Senator John McCain (Rep AZ) and his staff for an hour.
To view photos from the #MillionsMissing protests around the world, go here.
The #MillionsMissing protest list of demands can be found here.
For #MillionsMissing in the news go here.
More than one hundred people gathered in front of the Federal Building in San Francisco. Carol Head, CEO of Solve ME/CFS Initiative, exhorted the federal government to live up to its promises. “We're all here today, because it's time for our government to increase funding and support for this disease,” she said. Ron Davis, scientific director of Open Medicine Foundation, talked about the research he is doing. “We are very close to finding a biomarker,” he said. “We do NOT want to wait another thirty years.” And as his wife, Janet Dafoe, spoke about their severely ill son, Whitney, the crowd chanted “Whitney … Whitney … Whitney…” bringing tears to her eyes.
In Boston, demonstrators assembled at the JFK Federal Building. They handed out information and gathered signatures on a petition to support more funding for ME/CFS. Members of the group met separately with senior officials from the Boston branch of Health & Human Services to ask for their support. Charmian Proskauer, President of the Mass CFIDS/ME and FM Association was upbeat about the meeting. “They were very well informed, understood our issues, and asked great questions. We see this as the beginning of an on-going relationship,” she said.
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In Melbourne, hundreds of shoes were placed on the lawn in front of the Victoria State Library. (Photo credit: Karyn Adams)
In London, demonstrators held a silent protest at the Department of Health. Many stretched duct tape across their mouths to symbolize government neglect of ME/CFS patients. Ollie Cornes, a former software engineer, said, “The treatments the NHS provides are so ineffective as to be a waste of time and can be very harmful, which is why we are protesting at the Deptartment of Health.” Like so many other patients, Cornes was unable to attend the demonstration in person. He was represented by a pair of red baseball shoes.