"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

About This Blog

Months ago, Marly Silverman, patient advocate (and CFS/ME patient herself) and Founder of P.A.N.D.O.R.A, and I briefly exchanged emails and discussed our captivation with the phrase "Failure to Thrive". And sorry if I fail to get the facts or flow here correct Marly! I think she commented that years ago she had written a piece regarding how society had/has created an inhumane environment for CFS/ME patients to live in.  Because of the stigma placed upon us by the powers that be (the CDC, NIH and the UK weasels et all.), of being malingering and lazy, the resulting non-support form the medical community and in too many cases, from our family and friends; the lack of medical research and care, patients simply fail to thrive (and some do not survive). They cannot begin to be expected to thrive in such a barren environment.

While Marly reported from a global perspective, mine was on a smaller scale.  During my 16 years with this illness, I have looked into countless pairs of eyes that read "You have failed, now please just die".  Since there were no answers for why I was so ill, and indeed I didn't look ill, I was cast into the medical quagmire of failing to thrive (and according to them, it was my own failings). So many faces said this, and after awhile, I felt the repercussions of internalizing it. I sometimes still struggle to overcome it. But that is not what this blog is about.

I came across the yellow rose against a bleak background image years ago.  It reminded me that whatever this illness throws at me, it will never diminish me.  The blog's background is also a parched caked environment, and if you look closely, you will see a bolt of lightning striking the ground. I find it immensely beautiful. And that is what this blog is about. It is about a beauty so rare, so brilliant, that it can only be created out of extreme adversity and pain.

This blog is about the beauty born from darkness and  struggle that is luminescent and fathomless. These people I share this illness with, these warriors and patrons of light, fight their own ongoing and unspeakably brutal battles with this illness daily; some on an hourly basis.  Some just strive to get through the minutes of it, day after day, week after week, for Years on end.  I dedicate this blog to all of them.  Know you are loved. Know you are my wellspring of divine light and courage. I can never thank God enough for your presence here on earth.

A special thanks to my WPI facebook friends, and to the Whittemore family and the WPI staff.  God Bless you.

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