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

9 comments:

  1. Thank you so much! Preaching to the choir indeed!

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  2. The problem is that ALL US groups (CFIDS Assoc, Pandora, Phoenix Rising, co- cure etc) put out ME/CFS misinformation, so it is really not preaching to the choir. It is necessary to refute the ME/CFS misinformation. Many of these ME/CFS fraudsters now bill themselves as ME groups/advocates.

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    1. Jill, I agree it’s necessary to refute the “ME/CFS” misinformation and educate the patient population about the difference between ME and “CFS”. I also think it’s necessary to go beyond that population and educate the general public about the difference. MEadvocacy.org seeks to do just that with its public relations campaign.

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  3. Just a reminder, donations are being matched, up to $1,000 until 11:59 1/21/15. Every dollar and share helps. Btw, thanks a million to donor matcher!!

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    1. Yes! Until 11:59 pm Wednesday, October 21, donations up to $1000 total will be matched! I join you in thanking the generous matching donor, Gina. :)

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  4. Oh my. Thanks for sharing the video. Was just browsing through the Internet. Keep sharing it. Greetings Anil van der Zee

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