MillionsMissing graphic 1For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is not to say these actions have not been worthwhile or important. They’ve been both.

But #MillionsMissing is something new. Organized by MEAction, the #MillionsMissing project will take place in multiple cities on May 25, 2016, with a coordinated campaign of demonstrations and demands.

The #MillionsMissing demands are straightforward:

  1. Funding and program investments commensurate with the disease burden
  2. Clinical trials to secure medical treatments for ME/CFS
  3. Replacement of misinformation with accurate medical education and clinical guidelines
  4. HHS leadership, oversight and a serious commitment to urgently address ME/CFS

These are goals that our entire community can get behind. Action on these four fronts is desperately needed, and this is the only path forward to restore the millions of people missing from their careers, schools, social lives and families due to this debilitating disease.

I cannot attend a protest in person, but I have sent my favorite pair of pumps from my days working in a law office in my place. I miss my career, even twenty-one years after I lost it to this disease. I will also be participating in the virtual protest on May 25th. I sincerely hope you will join me in whatever capacity you can.

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9 Responses to #MillionsMissing

  1. Kellie Nicholson says:

    I think a campaign to write letters to every health organization, every member of our legislature and news outlets might be effective in gaining the attention we need. If only Hollywood would do a movie about ME/CFS. Physical protests require energy, which ME/CFS patients don’t have. :o(

  2. Rivka says:

    Great stuff! There are now #MillionsMissing protests happening in front of U.S. Dept. of Health and Human Services (HHS) offices in Washington, D.C., Atlanta, Boston, Dallas, Philadelphia, San Francisco and Seattle. From the #MillionsMissing protest press release: “The patient advocates will demand the government make a serious commitment to urgently address the debilitating neuroimmune disease ME/CFS, including funding research and promoting appropriate clinical care for ME/CFS patients. They have also requested a meeting with HHS Secretary Burwell.” And many of the protest sites at regional HHS offices are also requesting meetings with HHS officials there. WE CAN MAKE A DIFFERENCE for the millions of patients and their families/caregivers who are missing out on their lives, especially those who are stuck at home or in bed because they are too sick to get out.

  3. Rivka says:


    These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into a national, multi-city protest. With that in mind, we will have an open community meeting on Wed. May 11th, 2 pm EDT to discuss the demands and hear any questions or concerns about them.

    These demands are a living document. After the protests on May 25, the demands will evolve as #MEAction receives input from the community and when we can gauge government response. MEAction.net will be setting up a mechanism for receiving that community input.

    RSVP for the Demands Call Found Here:

  4. Tracy DeCroce says:

    thank you for letting us know about this, Jenny!!!! I’ll be there in Seattle. So far, we are seven strong. I’ve posted on FB so maybe some friends will be able to join. Finally something I can DO. Feels great!

  5. LJSpot says:

    So glad to hear that others are carrying the ball! Let me know if you hear of action in Lexington Ky

  6. kathyd says:

    I wish I could do something in New York, but probably can’t. Will do
    what I can from home.

    Also, I have some hope that Jen Brea’s film will get national attention.

  7. JJ says:

    Canada flooded the inboxes of up to 300+ parliamentarians by sending about 500+ emails during our one hour protest in Canada.

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