Author: Jaime S

#MillionsMissing Protest in 12 Locations all Over the World

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,

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Speeches from the Front Lines of #MillionsMissing: Terri Wilder

My name is Terri Wilder and I’m a person living with ME. I was only diagnosed with ME about twelve weeks ago so it feels a little strange for me to be here today and introduce myself this way…… I typically introduce myself this way: “Good Afternoon, I’m Terri Wilder. I’m an AIDS Activist and a

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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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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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Send this personal appeal to healthy volunteers

Hi, everyone!  This is more of an opinion piece, though it does have to do with #MillionsMissing. As you might imagine, we will really need healthy people to come out and support us: to help with setup and cleanup; to hand out water and food; and to raise their voices alongside our own.  I wrote

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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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Fluge and Mella's search for genetic markers

In Dr. Albright’s study of the families of ME/CFS patients in Utah, risk of ME was found to be 2.7 times greater in first-degree relatives of ME patients, 2.3 times greater in second-degree relatives, and 1.93 times greater in third-degree relatives.  This familial clustering is the basis for new research in Norway, where scientists are

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