Thursday, August 8, 2013

Awareness Video (Revised): What is ME/CFS?

A few years ago, I created a short, informational video in the hopes of increasing awareness about ME -- the extremely serious and debilitating disease from which I suffer.  Due to my health, it had taken me over four months to complete. 

However, since that time, some of the research changed, and the video therefore became outdated.  Over the course of several months, I have therefore slowly worked on revisions -- updating information and adding more patient photos.  You can find the new version below.  Please feel free to post and share widely in order for it to reach a broader audience.

I should note that the majority of patients featured in this video are on the more severe end of the spectrum.  They are shown here because they are otherwise not often seen.  Bedridden and/or housebound, these patients are typically unheard, unnoticed and forgotten.

My goal is to help raise awareness about the harsh realities of this illness and the urgent need for increased funding.  With more funds for research, there will be more answers, and with answers there is hope.

Thank you for watching, and much thanks to all those who kindly allowed me to use their photos and to briefly share their story.

Note:   In using the term ME/CFS for the purposes of this video, CFS refers to the Canadian Consensus Criteria and the International Consensus Criteria.  There is some controversy about this issue.  For more on the importance of definitions, please refer to David Tuller's excellent article "Chronic Fatigue Syndrome and the CDC: A Long, Tangled, Tale."

This video was originally uploaded on August 7, 2013 and re-uploaded on August 31, 2013 in order to make a few additional small edits.  Thank you for your patience.