You guys are incredible. Together we've all raised $1,285 in just the past 57 hours--in no small part because of this post and the care of everyone here. Thank you, for this, for donating, and for the kind words you continue to share with Brooke. Her mother and husband especially go through hell because of the public's misunderstanding of M.E., when they need and deserve the most support at this time than at any other time in one's life. To be losing your child, and your life partner, and be told that "well these organizations say people don't die from 'ME/CFS' so obviously YOU'RE doing something wrong"...?! It's infuriating and heartbreaking.
But we both have great hope for this project from Mary Ann Kindel, to help set the record straight once again so ALL of us can get proper research. When we start getting accurately diagnosed instead of just thrown together out of medical confusion, research on people with both M.E. and CFS will show repeatable and consistent results, instead of what we have going on today. When the pharmaceutical companies see that consistency, they will leap to profit off of us (though I'm sure a special few will genuinely be concerned for our wellbeing) and we'll start to see progress. This will also immensely help our current M.E. pioneers speed up their existing research.
We've all settled for this jumble of diagnostic confusion for 30 years. It's time to do it differently. We got so much critical research done when M.E. actually meant M.E., and that's why we need to get it back. Brooke has gone public for us, but I know others also dying on quieter terms; this is a very serious disease.
The most important thing Brooke says she's ever written was this post, so I'm putting it here, again:
http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/
Please continue to educate yourselves, your loved ones, and even your doctors if you can--and from myself and on behalf of Brooke who has said so: Thank you so much for supporting the National PR Campaign for Myalgic Encephalomyelitis!
Kit (a rainbow at night)
