Posting this at the request of Charlotte von Salis
I recently was given the opportunity to do a short ME awareness video by Jim Radke of Rare Disease Report while at an event sponsored by Rare Disease Legislative Advocates. Why bother? Up until recently, NIH listed ME/CFS as a rare disease. One of the CDC's own prevalence studies puts us close to the 200,000 within the US population; the government's legal maximum for rare diseases. Strictly-defined ME could easily be "rare". And last but definitely not least, I believe we need to make potential allies aware of our disease. Rare Disease Report reaches an audience outside of our usual choir, including people interested in not only rare diseases but neglected ones as well. I'm sure everyone agrees we are neglected!
Please check out the video and share it on your blog, website, forum, Facebook, through your networks and email contacts and in any other way you can think of. If you start playing it, you'll see you can share it via YouTube as well.
http://www.raredr.com/advocacy/videos/myalgic-encephalomyelitis-disease-looking-respect
I recently was given the opportunity to do a short ME awareness video by Jim Radke of Rare Disease Report while at an event sponsored by Rare Disease Legislative Advocates. Why bother? Up until recently, NIH listed ME/CFS as a rare disease. One of the CDC's own prevalence studies puts us close to the 200,000 within the US population; the government's legal maximum for rare diseases. Strictly-defined ME could easily be "rare". And last but definitely not least, I believe we need to make potential allies aware of our disease. Rare Disease Report reaches an audience outside of our usual choir, including people interested in not only rare diseases but neglected ones as well. I'm sure everyone agrees we are neglected!
Please check out the video and share it on your blog, website, forum, Facebook, through your networks and email contacts and in any other way you can think of. If you start playing it, you'll see you can share it via YouTube as well.
http://www.raredr.com/advocacy/videos/myalgic-encephalomyelitis-disease-looking-respect