Tuesday, January 20, 2015

Let's Stop Preaching to the Choir

Watch this interview with a former ballet dancer felled by M.E.  Click on the "CC" below the video for subtitles if they don't pop up for you. 

If you're like me, you'll find it very moving.  This video relays an accurate description of M.E.  The problem?  It's being shared and seen by the M.E. community for the most part.  We are preaching to the choir. 

This is why we need to try something different to change public awareness of M.E.  This is why we need the help of new patient-driven initiatives like those of MEadvocacy.org which are dedicated to M.E.  

MEadvocacy.org has hired a public relations firm that will work for us at a steeply discounted rate to get media attention and provide healthy people to "stand in" for sick people who protest the U.S. Department of Health & Human Services' attempts to redefine M.E.  While patients, caregivers, family members, and friends have managed small demonstrations like this one, they have all been at great cost to the health of those involved.  

The firm started working January 1. More donations are necessary to finance its continuing work.  There is a $1000 matching challenge grant running until January 21, midnight EST. Anything donated, up to a total of $1000, will be doubled.  

Please don't stop donating past January 21. This is a six-month contract and the public relations work is just getting started. 

The IOM report will be coming out February 10.  The P2P is also wrapping up and may be completed in late January or early February. Continued funding is crucial to combat these two redefinitions. Please donate and/or encourage others to.   You'll be helping yourself as well as the M.E. community as a whole.

For more information and to donate to the public relations campaign, click on this link