Tag: awareness

New ME/CFS Book: Lighting Up a Hidden World

This month, Valerie Free’s new book, Lighting Up a Hidden World: CFS and ME will be released to the public. In 1990, Valerie Free was a vibrant, thirty-year-old woman: a court stenographer, wife, and mother. In July of that year, she came down with a sudden, flu-like illness and after months of unrelenting and bizarre

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Announcing the Winners of #MEAction's Poetry Contest!

#MEAction is pleased to announce the winners of the 2016 #MillionsMissing Poetry Contest. We were astounded by the number of submissions we received and we would like to thank everyone who produced such incredible work! We hope that this will become an annual tradition and that even more people will participate in the future. With

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Jen Brea to give TED talk on June 27!

Documentary maker and #MEAction founder Jen Brea will give a talk at the prestigious, five-day TED summit in Banff, Canada, on Monday, June 27. Her presentation will be one of seven talks by TED fellows in a session starting at 11:15 a.m. MDT (Mountain Daylight Time) and will focus on her experience with ME. The

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Top Medical Schools Teach Little about ME/CFS

Based on information from four medical schools, medical schools rarely address ME/CFS in basic instruction or as case studies. The University of North Carolina School of Medicine is ranked second in primary care in the 2017 U.S. News and World Report. Kurt Gilliland, PhD, is its assistant director of curriculum and evaluation.  When interviewed, he

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Canada – open letter to gov't from family of #MillionsMissing

Name/Nom: William A. Downey, BA, BSW Province:  BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who

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#MillionsMissing Meets With Government Officials

In late May, protesters all over the world met with their government representatives to discuss the #MillionsMissing demands:  better research funding, better physician training, and government oversight for ME/CFS. In Washington, DC, nine #MillionsMissing protesters met with 17 U.S. Congressional offices: Senator McCain (AZ-R) Lindsey Graham (SC-R) Dianne Feinstein (CA-D) Tammy Baldwin (WI-D) Cory Booker

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Belfast: Make your voice heard at tomorrow's #MillionsMissing Protest!

What is Chasing Competent Care? Hope 4 ME & Fibro Northern Ireland have organized Chasing Competent Care as part of a campaign to improve medical care for the thousands of ME and fibromyalgia patients in Northern Ireland.  The conference will be tomorrow, Monday, June 6 at 6 PM at the Stormont Hotel, 587 Upper Newtownards

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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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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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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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