Update: the ongoing work of #MillionsMissing

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Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in 11 cities in May –  and in 25 cities in September – to protest their government’s neglect of people with ME.
While the posters are now stored away, activism has continued behind the scenes in follow-up meetings with government officials.

Successful outcomes and ongoing work of #MillionsMissing

  • In the U.S., activists have met twice with Assistant Secretary of Health Dr. Karen DeSalvo to urge the HHS to take urgent action to address the crisis in clinical care for ME, and the woefully inadequate funding. Read more here.

    Momentum from #MillionsMissing meetings with congressional representatives led to the formation of a congressional team that was successful in getting 55 House representatives to sign a bipartisan letter to the NIH inquiring about its plans for ME.      
  • In Holland, the #MillionsMissing protest led to a parliamentary representative sending a letter to the Minister of Health with a list of questions based off the protest demands.  
  • In South Africa, #MillionsMissing contributed to the scheduling of a program on ME/CFS on a national television station, which is due to air in early 2017.
  • In Oslo, activists met with a politician at Parliament after an article they wrote was published in a newspaper.
  • In Australia, House member David Feeney said that he would follow up with the federal Health Minister in a written letter he sent to an activist.
    A petition for increased biomedical research funding is being coordinated to present in the Victorian State Parliament.
    A media group is working on a mini documentary about people with ME, to be released in 2017.
  • In Canada, the government has reached out to the National ME/FM Action Network to consult on ME. #MillionsMissing activists say that the Canadian government has ignored ME for decades and attribute this result to their #MillionsMissing campaigns. In May and September, activists sent 1,000 emails and 7,000 emails, respectively, to the Health Minister and members of Parliament.

    After activist Cindy Downey contacted her MP via email, MP Stephen Fuhr has included an ask for more funding for ME/FM in his pre-budget report to the Federal Finance Minister. Downey is an independent affiliate ‎of Millions Missing Canada.

    In October, #MillionsMissing Canada held a “sick-in” protest on a busy street in front of health offices downtown Toronto. The Health Canada offices were put under “lock down” in anticipation of the protest.

    This January, #MillionsMissing Canada plans to launch a federal petition calling on a national strategy for ME and has recruited MP Nathaniel Erskine-Smith to be the sponsor.

If you have a #MillionsMissing success to share that’s not listed here, email [email protected] and we’ll include it in this article.   

Successes from the Day

Let’s not forget about the immediate successes following the #MillionsMissing protest in September. Here’s a nice reminder of everything you accomplished that day:

The media told our story. The press told the story of ME a total of 45 times, including 24 press hits in the US and 13 in the UK.

We met with government officials. Activists met with their local government representatives around the world to tell their story and demand action be taken for ME.

World-renowned doctors and researchers spoke about the devastation of ME, and the urgent need for research funding. Researchers and doctors spoke at protests across the U.S., including Dr. Susan Levine, Dr. Mady Hornig., Dr. Ron Davis., Dr. Jose Montoya, Dr. Eric Gordon, Dr. Marcie Zinn and Dr. Leonard Jason.

We crafted our Demands. #MEAction USA developed its Protest Demands for #MillionsMissing through a community process, which is still ongoing.
Government officials joined our cause. Representatives showed their support for #MillionsMissing across the world, including Colleen Hartland, MP in Melbourne; State Representative Michael Caldwell in Atlanta; Assembly Member Julie Morgan in Cardiff; Representative Olaug V. Bollestad in Oslo; and by Twitter in the U.S. – Senator John McCain, Senator Thom Tillis and Congress rep. Eric Swalwell.
US cities proclaimed ‘ME Day’s. San Francisco, Northampton, MA and Montgomery County, VA issued Proclamations of Awareness for ME Day.
We came together. Activists and organizations fighting for ME came together across the world for a day of solidarity: “The day was in equal measures surreal, empowering, saddening and desperately emotional,” said L.A. Cooper who organized the protests in London. “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 trended on social media. The #MillionsMissing hashtag trended on FB and Twitter for our moment in the social media limelight.  


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1 thought on “Update: the ongoing work of #MillionsMissing”

  1. All that you do makes a difference and much of it is inspiring and Gods work. I hope the Anels are with you and that soon the lethargy that has stolen over the souls of government and the health care industry will dissolve. I will be pressing University Presidents and Commissioners of Health to do more to take ME seriously and this month I will address my own Commissioner of Health and legislative leaders in NYS to work with people with me to chart a much better course for the future of those with ME.

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