Tag: advocacy

Speeches from the Front Lines of #MillionsMissing: Ron Davis

I’m Ron Davis and my son is missing… Linda Tannenbaum has really helped us a lot in raising funding. We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research.  And we are making progress. Now, it is very

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Six ways you can take action today!

1) PUT YOUR SHOES OUT Put your shoes out on your front step, at the end of your driveway, or in a public place to symbolize a patient, a friend or a loved one missing because of ME; consider placing them with a sign to tell the story of just what that person – and

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Act now! Our #MillionsMissing Round-Up

Hello, everyone! It’s only three days until the #MillionsMissing protest, so it’s time to review what’s gone on so far, and discuss what you can do to help ensure we are heard by our governments! Locations: So, your protest has gone out into the world and is now in a dozen different locations. Locations now

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CFS Advisory Committee Meets

The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.

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AIDS activist with ME speaks at CFSAC

An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government health bodies for repeating AIDS history by “doing nothing” for millions of ME patients. Terri Wilder, from New York, provided testimony at the CFS Advisory Committee (CFSAC) meeting on 18 May. Terri stated that her testimony

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A personal appeal by Holly L.

Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture. Its mate is missing, as is so much of my former life. I got all teary-eyed and found myself just touching the shoe ,and as my fingers ran over the sides my memories came flooding back.

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Share #DontIgnoreME films to raise awareness

This M.E. Awareness Month, our is simple: don’t ignore M.E. To spread this message, Action for M.E. launched three films as part of M.E. Awareness Week. Starring Sharon and Douglas, who have M.E., Sharon’s partner Connor, and our medical advisers Dr Gregor Purdie and Prof Julia Newton, each focuses on a different aspect of M.E. and its impact.

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Use these incredible #MillionsMissing posters!

Recently, a #MillionsMissing artist has created a compelling series of posters for the campaign that illustrate the concept of disappearance from one’s own life with incredible eloquence.  Feel free to use this idea, or to make use of the posters below.  You are also welcome to add information to the bottom of the global versions

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Attend the Protest Meeting Tomorrow

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 receive input from the community.  We will also be

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