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New Video: What is ME/CFS?

Posted Dec 19 2010 9:17am

Due to my health, the above video took me a little over 4 months to complete. I created it in the hopes that it might help, even in just a small way, to increase awareness about ME/CFS. This is an important time in the history of the disease, and awareness and advocacy are essential in helping to ensure that funding and research move forward.

My fiance is in this video, as are some good friends and people I have long admired. I hope their photos help put a face to this illness. They each have a story to tell, as do the 17 million others who suffer from ME/CFS world-wide.

I have disabled comments on YouTube because I am simply too sick to monitor them on a regular basis. However, you are free to give the video a thumbs up or down as you see fit. :) Please also feel free to repost the video and share it with others.

In other ME/CFS news, as most here will already know, last week an advisory committee to the Food and Drug Administration recommended that patients with CFS be banned from donating blood (through a new, routine screening question). This, of course, is in light of the possible link between ME/CFS, XMRV and other MLV-related retroviruses. You can read more about this recommendation in the Wall Street Journal article, New Blood-Screening Advised.

The American Red Cross has also recently banned CFS patients from donating blood. This decision follows Canada, New Zealand, Australia and the UK -- countries which all banned blood donations from ME/CFS patients in the last year.

Here's hoping the new year brings even more promising developments, particularly in the form of well-designed research studies and clinical trials. Perhaps then we can finally have definitive answers, and thus a treatment or cure that allows each and every one of us to get our lives back.

Wishing everyone a healthy, happy holiday season!
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