Millions Missing Day of Protest Draws Attention to Plight of ME/CFS Patients All Over the Globe - Prohealth

By Erica Verrillo

On September 27, ME Action sponsored the second Millions Missing global event. (The first was in May 2016.)

The purpose of the Millions Missing events was to draw public attention to ME/CFS, to demand increased funding into research for biomarkers and for effective treatment, and to improve medical education and patient care. (You can read the demands HERE.)

The global day of protest was a resounding success, with demonstrations in twenty-five cities in ten countries, and more being planned. The Millions Missing events drew ample media attention, as well as interest from government representatives and hundreds of passersby who saw the moving displays of empty shoes and stopped to talk to the volunteers – both patients and supporters – who dedicated their day to this worldwide effort.

I have selected some representative photos below, but to get the full impact of the event, I encourage you to browse ME Action's gallery of inspiring photos HERE.

Please donate to this admirable initiative! This is the first time that there has been a coordinated international movement to bring attention to this disease, and to raise awareness at such an impressive scale. Millions Missing deserves our whole-hearted support!

DONATE HERE.

UNITED STATES

ATLANTA

In Atlanta, Georgia, a group gathered at the State Capitol to give speeches about personal tragedies, the history of ME/CFS and hopes for a new science leading to a brighter future. State Representative Michael Caldwell was present and several other Representatives and staffers stopped by to listen and learn.

BOSTON

Patients and supporters met in front of the JFK building to raise awareness for ME/CFS. They laid out shoes, handed out flyers, displayed posters, and chatted with passersby. A couple of patients did performance pieces!

CHICAGO

Over 70 patients gathered outside the James Thompson Center in Chicago. Carol Head spoke as a patient and the president of SolveME/CFS Initiate stating "we will no longer be ignored." She focused her speech on the Institute of Medicine's report. Leonard Jason spoke about the severity of the disease and Marcie Zinn described the brain research she is working on at DePaul University in Chicago.

Press: Chicago Residents To Protest Lack Of Support For Those Suffering With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

DALLAS

Eight people attended the Millions Missing protest at Dallas City Hall Plaza. A 25-foot banner was displayed among posters and photos of patients who were unable to attend. The protest demands were read and posted on Facebook live.

LANSING

The Lansing #MillionsMissing protest was held on the East steps of the Michigan State Capitol building, and several local news crews were present. Nineteen attendees from all over Michigan held signs and sat on the steps under a large banner. Patients shared their stories, and there was a long moment of silence for those who have died and those who are bed-bound.

MORRISTOWN

In Morristown, NJ, the demonstration lasted from 3:30 – 8:30 PM. Many people stopped by to learn more about ME/CFS, as well as the lack of funding and support from the NIH, CDC and HHS. The patients who were able to stop by were very grateful for this initiative.

NEW YORK

The NYC protest had approximately forty people in attendance with a full agenda of speakers. Dr. Susan Levine, Dr. Mady Hornig, Jim Eigo (ACT UP/NY), Annette Gaudino (Treatment Action Group), ME Activist Terri L. Wilder as well as other people living with and affected by ME spoke at the demonstration. A few reporters showed up and at the end of the demonstration Terri and Annette attempted to deliver a "bad report card" to the HHS regional office director but were stopped by building security and threatened with a citation! (See pictures in NYC photo folder HERE.)

After tweeting "at" Jackie Cornell, HHS Regional 2 District Director, and asking her what she has done for New Yorkers with ME, ME Activist Terri Wilder received a private tweet from Ms Cornell stating "I'd love to sit down and discuss. I'm in DC a few days of this week and next but please email me and we can set up a time. Thank you for your advocacy and reaching out!"

Press: “More than a million Americans are suffering from a debilitating disease that makes simple tasks impossible — and they’re fed up with being ignored,” Business Insider

NORTHAMPTON

About a dozen patients and supporters gathered in front of City Hall in Northampton, MA. Passersby stopped to look at the display of shoes on the steps of City Hall, as well as read handouts and talk about ME/CFS with demonstrators. Lisa Hall, RN, from Northampton Wellness Associates gave a speech about the countless patients with ME/CFS she has seen, and described the severity of the disease. One patient spontaneously went into the building to invite the mayor to come down and visit. He did, and after speaking with the demonstrators offered a City Proclamation making May 12 official recognition day for ME/CFS.

Press: The local NBC station came and shot footage for a TV piece that ran on the evening news: http://wwlp.com/2016/09/27/millions-of-americans-suffer-from-chronic-fatigue-syndrome.

SAN FRANCISCO

Well over 100 people showed up for the Millions Missing day of action in San Francisco. Over 150 patient profiles were stretched across 120 feet and a 60-foot quilt made over 17 years ago was displayed. The quilt was created in three countries as a desperate plea for visibility and funding.

Hundreds of individuals passed these displays, many of them stopping to look for several minutes and ask demonstrators about the illness. Patient Sonya Heller Irey gave a passionate speech about the devastation this disease can inflict on an individual. A proclamation provided by Mayor Ed Lee was announced, naming a day of Awareness for ME in San Francisco, and a certificate of honor was issued by the San Francisco board of supervisors in recognition of the advocacy of the Millions Missing campaign.

Groundbreaking ME/CFS researchers, Dr. Eric Gordon, Dr. Ron Davis, and Dr. Jose Montoya, attended this event. Dr. Eric Gordon talked about potentially having a biomarker in the near future based on the recent metabolomics study.

“CFS/ME has devastated the lives of millions of people worldwide. The pain, suffering and solitude that this disease has brought to so many human beings is immeasurable. For the past 35 years, CFS / ME patients have been ignored, humiliated, misdiagnosed, mistreated and told that the disease is the product of their imagination. As a clinician investigator at Stanford University, when I close my eyes and I see the disease in all its enormity and complexity, I can only conclude that this is likely one of the greatest medical and scientific detective stories we face in the 21st century,” said Jose Montoya, professor at the Stanford University Medical Center.

Dr. Ron Davis added. “Unfortunately this [protest] is really necessary…. NIH funding gives you a steady state level of funding for five years so you can plan and you can hire people and you can do a much more effective job of doing the research… it’s not about doing one study, it’s about a sustained effort to figure it out and that’s why we need government funding in this project.”

SEATTLE

Demonstrators handed out flyers and held up signs for about two hours while passersby stopped to talk. Those who stopped were saddened and surprised by the fact that many people get so ill they can no longer work at all and stay in bed most of the day. It was a wonderful opportunity to come together to spread awareness of this debilitating disease.

WASHINGTON, D.C.

A large protest was held at the U.S. Department of Health and Human Services in Washington. Speakers included Ryan Prior and Hillary Johnson. Laura Benson and her husband, a retired Air Force officer, also gave compelling speeches. Three journalists covered the event, and the Montgomery County Council (home of NIH) issued a proclamation supporting ME/CFS awareness day.

Press: #Millionsmissing ME/CFS Protest in Washington, D.C.,” Inspire

CANADA

TORONTO, CANADA

A protest was held at the Health Canada Regional Office at 180 Queen St West, Toronto on October 6, from 12 – 2PM. ME/CFS specialist Dr. Alison Bested attended the event.

You can find more information here: https://www.facebook.com/events/1120173071406359/?active_tab=posts

UNITED KINGDOM

LONDON

“The day was in equal measures surreal, empowering, saddening and desperately emotional. The sense of brotherhood felt almost palpable as we stood together and spoke about our experiences with ME – our personal struggles, our deepening concern over graded exercise trials, particularly in children, and how one mother now cares for her husband and two children, all of whom suffer from ME.

We were grateful to have been live a total at least three, perhaps even four times throughout the protest thanks to London Live News (footage to follow) as well as grasp the attention of hundreds of passers-by with our strong words, our prominent display of shoes, and of course, our naked protester holding up the sign, You can’t ignore ME now.”

PRESS: “Striking protest about ignored ME sufferers outside the Department of Health in London today #MillionsMissing” (Christopher Hope, Assistant Editor and Chief Political Correspondent, The Daily Telegraph, on Twitter) https://twitter.com/christopherhope/status/780725734432247808

BELFAST

Dozens of shoes were laid out at Stormont, the seat of the Northern Ireland Assembly. Twenty-seven protestors held signs, including Sally Burch, long-time patient and Trustee of Hope 4 ME and Fibro. According to the Telegraph, Ulster Unionist health spokeswoman Jo-Anne Dobson MLA hosted the campaign. She said: "The sheer passion and drive of campaigners on display today at Stormont must be met by real and positive change in the treatment of thousands of patients across Northern Ireland."

Press: “Demonstrators at Stormont urge more research into chronic disease ME,” The Irish News, 28 September 2016

“ME sufferers step up drive for more help,” Belfast Telegraph, 28 September 2017

BRISTOL

Bristol displayed 150 shoes on College Green in central Bristol, for a day of protest on behalf of the Millions Missing. ME patients, loved ones and family members gave out leaflets and talked to passersby, most of whom were visibly shocked to learn the truth about this devastating illness. One individual stayed for almost an hour reading every single label on every pair of shoes. Many wanted to donate to fund research.

Press: BBC Radio Bristol (at 2hrs 11mins): http://www.bbc.co.uk/programmes/p046wd9k

Bristol Post: 100 pairs of shoes used to make poignant protest on ME research in Bristol city centre

CARDIFF

The Millions Missing event in Cardiff was held on the steps of the Welsh Assembly looking out over Cardiff Bay. Rows of empty shoes were a very poignant reminder of what the demonstration was all about. The Cardiff Rock Choir volunteered their services free of charge and drew the attention of passersby. A dance trio also performed, adding to the day's events.

A number of Assembly Members came out to speak with the demonstrators, including Julie Morgan who sponsored the group. Jan Hutt Assembly Member for the Vale of Glamorgan also came out onto the steps of the Assembly to speak to the demonstrators. Other Assembly Members stopped to find out more about Millions Missing, including Vikki Howells AM for Cynon Valley, David Melding AM for South Wales Central, and Dai Lloyd AM for South Wales West.

Press: Made in Cardiff TV came to film the event and presented a good report at 6 pm and 9 pm on their Tuesday evening News.

NOTTINGHAM

About 15 patients, family and friends gave out 200 flyers, spoke to 300 people, and got 30 signatures to stop GET trials on children. A passing ME patient couldn't believe that someone was standing up for ME "as people never do anything for us."

Press: BBC Nottingham Radio, covered on news bulletins throughout the day and had a 10-minute segment (about 5:20) as part of drive show (prime driving home from work time)

BBC East Midlands Today covered the demonstration on local TV news on the evening news segment. They filmed at the event and at a patient’s home.

OXFORD

The Oxford event took place in front of the Radcliffe Camera Landmark. Over 100 pairs of shoes were laid out. Volunteers helped to hand out around 200 leaflets and explained ME to curious passersby, many of whom stopped to read the shoe tags describing each sufferer's experience with ME.

Press: BBC Radio Oxford

BBC South Today

Oxford Times

Oxford Mail

CONTINENTAL EUROPE

HAMBURG, GERMANY

Patients and relatives met at the Hamburg harbor to raise awareness of ME/CFS. People came from all parts of the country and there was huge virtual support.

“ME/CFS must be considered as a severe physical illness. It’s time to take us seriously!” said Daniel from the German Society of ME/CFS. Nicole from the Lost Voices Foundation pointed out that “Patients are left alone! This day is so important for us to raise awareness of ME and to eventually improve overall care and treatment.”

THE HAGUE, NETHERLANDS

A Millions Missing protest was held from 10:00 AM to 4:00 PM in front of Parliament in The Hague. About 1000 pairs of shoes were displayed, which drew the attention of many visitors. Fifteen demonstrators handed people flyers and talked with them about ME. Dr. Frans Visser gave a speech. The group spoke to two members of Parliament from two different political parties.

Press: ME Patients Display Thousands of Shoes on the Square
Omroep West: ME patients demonstrate in The Hague Square
De Telegraaf: Silent shoes parade before Lower House
Radio 1 interview with Carolien van Leijen: ME patients want more understanding, not comments like "get a dog"

Read more about Dutch press coverage HERE.

OSLO, NORWAY

Demonstrators in Oslo displayed 250 pairs of shoes and spoke with 300 passersby. Olaug V. Bollestad, a member of Parliament, and two speakers from patient organizations gave speeches. Three musicians performed. One patient group brought fruit and yoghurt for the participants to tide them through the event. The participants intend to start a collaboration with the Norwegian research fundraising group to help fundraise for clinical studies here in Norway.

Press: The demonstrators were interviewed by a national radio station at 3pm and filmed all day by a documentary filmmaker who is creating a documentary about ME and the Rituximab study in Norway. The film will come out in 2018. The event was filmed live and had about 120 people watching the live feed.

“ME: – De meldes til barnevernet for omsorgssvikt,” Side Two, Sept. 27 2016

Additional links: https://www.facebook.com/elisabeth.royseth/posts/10153863829561680

VIRTUAL

SOUTH AFRICA

The recently formed ME/CFS Foundation South Africa held a virtual event. They asked patients for their stories and photos of shoes/activities they could no longer participate in, made posters, and posted these throughout the day on Facebook and on Twitter. They sent the virtual event to numerous online newspapers and also texted and emailed radio presenters throughout the day.

Press: Shoes for a Syndrome

MELBOURNE, AUSTRALIA

#MillionsMissingMelbourne will be held on 12 October at Victorian Parliament