Chronic Fatigue Syndrome Advisory Committee  


Chronic Fatigue Syndrome Advisory Committee Meeting in May 2012

Every year there are two Chronic Fatigue Syndrome Advisory Committee meetings in Washington D.C. One in November and one in May. Go to the meetings if you can to support others sharing their story. You can even share your own story.


You can take part in The Speak Up About ME Project  or go solo. No matter which way you attend…keep an eye on the CFSAC website for a notice of the meeting dates.

Check the website often. If you can’t attend but want to tell your story you can do it by writing a 5 minute story or your can video tape yourself on a DVD sharing your story.
Pre-registration is required.
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Speak Up About ME Helps Young People With Self Advocacy 

Many organizations will be in attendance at this May’s Chronic Fatigue Syndrome Advisory Committee meeting. Speak Up About ME’s Founder Denise Lopez-Majano heads up one campaign specifically for children and teenagers. Majano says, “Historically few young people have attended this event.”

Majano also says,”The project will also represent young patients who cannot attend due to health, finances or the distance of the travel by delivering their testimonials via video, telephone, e-mails and letters.”

Majano also coordinates the logistics of the event anything from finding a hotel room to getting assistance with getting your presentation to the Committee. Majano says,”I need to know how many people are attending meetings so that staffers can arrange for meeting rooms where we can all sit down during meetings with Senate staffers or Senate officials.”

The project is able to run through the help of donations.

Majano is the mother of two sons with  Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome.


If you would like more information on the Speak Up About ME Project please email speakupaboutme@gmail.com.

The url is : http://speakupaboutme.wordpress.com/ 

 
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