TODAY IS ME AWARENESS DAY
This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:
If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.
ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.
NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.
DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.
Please read her whole, excellent post.
Dancing is a human right
No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).
Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.
I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.
The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):
I kind of like this one.
I REALLY miss dancing.
Shall we dance?
Remember, my royalties for May go to the fight against ignorance and lack of research.
Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.