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.
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.
In Melbourne, the display of shoes outside of the State Library of Victoria was impressive:
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.”
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.
“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.”
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.
This was a HUGE protest! If there is information or a photo you would like to be in this article, send it to [email protected] and I will add it straightaway!
Written by Jen Brea and Jaime Seltzer
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the