Amsterdam Girls Raise Funds for Blue Ribbon Foundation

(Left to Right) Merel – 13, Stephanie – 12, Havana (holding the sign) – 12, Sophie- 13. By: Anil Van der Zee One of my good friends daughter Havana (12) surprised me with a very beautiful video message. She did something really incredible. I was so moved by it I felt it needed to be made […]

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Share your Story: Barbara Tuber-Sooy

Name: Barbara Tuber-Sooy Missing Since: 1980 Name: Matthew Tuber-Sooy Missing Since: 1992   “I first became sick in May 1980. After 8 years I was diagnosed with what was then called fibrositis. In October 1992 my precious 12 year old son, Matthew, got what we thought was the flu. After 5 months and 15 doctors he […]

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Share your Story: Annika Carlson

Name: Annika Carlson Missing Since: 2016 Location: Dallas, Texas   “21 years old. The age of fun and freedom as an adult right? Not if you have ME. Wake up. 10 hours of sleep. Not rested. Breakfast in bed. Every meal in bed actually. Maybe shower if I have the energy. Tired from shower. Back to bed. […]

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Share your Story: Anil van der Zee

Name: Anil van der Zee Missing Since: 2007 Location: Amsterdam   “Praised from the dark. Being alone on stage, you really don’t see audience. The first 2 rows might be visible, however the rest is as obscured as the dark night. Possibly their cries and sounds reach your ears on stage, but for sure, they are felt. Their presence […]

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Introducing Blue Ribbon Fellow: Kelly Gaunt

Here is a Q & A from Kelly Gaunt, who partnered with Kristina Gemayel in a DNA study of ME patients. They used social media as a recruitment tool to gather genetic information for the future use of genetic studies. Kelly’s research continues today as she currently seeks bigger platforms to gather data. Read about […]

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Share your Story: Sally Richardson

Name: Sally Richardson Missing Since: January, 2014. Location: Birmingham, United Kingdom   “My husband had a serious stroke in 2014 and I ended up looking after him and having to return to work full-time to make mortgage payments. A year later, my pet rabbit and best friend died suddenly in the same week, followed by the death […]

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Share your Story: Fiona M

Name: Fiona M Missing Since: 2010 Location: Australia     “The signs were there, long ago. In my last year at university, I developed stubborn bouts of tonsillitis. Later that year, I got a fever, was sick for 10 days, and lost a lot of weight. A doctor said, “It’s like the flu, but it’s not the flu.” […]

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An Interview with Ryan Prior via #MEAction

Ryan Prior first made waves with his article in USA Today about his experience with ME/CFS that was shared over 2,000 times. He spoke of, as a junior in high school, falling so ill he could no longer attend classes. “I saw about 20 different doctors that year from every specialty you can imagine,” he […]

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Share your Story: Jamison Hill

Name: Jamison Hill Location: California “The room is completely dark, even after I take off the washcloth and tanning goggles shielding my eyes from encroaching light. When Ryan and Nicole interviewed me for Forgotten Plague the body I worked so hard to obtain was wasting away, but little did I know how bad it would get. Gone […]

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Share your Story: Janet Dafoe (Whitney Dafoe)

Name: Whitney Dafoe Missing Since: 2006 Location: Palo Alto, CA Written by: Janet Dafoe, Whitney’s Mother   “I have a beautiful son. At about age 21 he started getting sick, and gradually faded from us. Whitney’s been lying in bed for 3 years, unable to speak with me. Now, even his memories fade from him. We had such a […]

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