Category: Featured news

Speeches from the Front Lines of #MillionsMissing: Sonya

Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy,

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Scientists write open letter to PLoS One

Five professors of science and mathematics, including Professor Ron Davis of Stanford University, have written to PLoS One demanding the correction of an “inaccurate claim” central to a PACE trial paper on cost-effectiveness that was published in the journal in 2012. Referring to a series of articles by Dr. David Tuller criticizing the PACE trial,

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Speeches from the front lines of #MillionsMissing: Carol Head

I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum.  Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers. Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are

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#MillionsMissing in the News

The #MillionsMissing protest gained worldwide attention in the form of national and local press, including an excellent piece by Rivka Solomon that was first picked up by STAT, a national publication, and then by Business Insider and The Week.  London’s protest was covered by The Evening Standard; and several local radio programs, including BBC Bristol,

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Speeches from the front lines of #MillionsMissing: L.A. Cooper

Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later

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2016 ME/CFS conference season opens

The Invest in ME conference in London on Friday, 3 June is the first of three major ME/CFS conferences this year and there are indications that patients may be able to access live updates or recorded presentations from all three. Some audience members attending the Invest in ME conference are expected to report live on

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Speeches from the Front Lines of #MillionsMissing: Jennifer Brea

#MEAction co-founder Jennifer Brea at the #MillionsMissing protest in Washington, DC, May 25, 2016 “Okay awesome. Wow this is amazing. As soon as I pulled up to the square here I just started sobbing because I have been waiting in some sense ever since I got sick for this moment to be  together here today

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Whittemore presents ME/CFS proposal to NIH, May 26, 2016

Chairman: For open session, this is a concept clearance, and just to remind you, normally we’re expected to spend our appropriated funds, sort of open to all things within our mission, and if we decided to a priori say we’re going to set aside a pot of money for some particular topic, then we need to

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#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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