Friday, June 17, 2011
Red Letter Day
I opened up the paper (computer) this morning and was astonished to read the announcement on Dr. Jamie Deckoff-Jones' blog. The Whittemore Peterson Institute in Reno, NV is going to begin seeing patients on August 1, 2011. In a sea of shit, this is one beautiful piece of information. You can read all about it on Dr. Deckoff-Jones's blog.
Many years ago now, a small group of people resolved to tackle these complex neuro-immune illness - ME/CFS in particular. They gave up waiting around for others to step forward, and they decided to do it on their own. These are remarkable people, able to push a situation to its fulfillment. In today's world, this kind of self-driven accomplishment is almost unheard of.
Today's announcement marks the beginning of the full realization of the dream of the Whittemore family (and their wide network of supporters in Nevada and world-wide). They dreamed to have a research and medical facility - researchers and clinicians - working side by side (bench to bedside) to figure out this complex disease - and to design treatments. They resolved to establish an Institute that had the sensitivity, expertise, and determination to wrestle with this illness that has been so marginalize and neglected for so many years.
Now the world has a physical place that can be a destination point for the thousands of patients who suffer from ME/CFS. Perhaps some of us will not be able to get to the medical treatment center - but all treatment protocols will be transportable. The real hope is that this medical unit will be the first of many. This is a huge step forward in this illness. This treatment center is something very real - and its reality is full of great symbolic meaning.
It is worth spending a moment viewing this short video about the WPI made by Peter Cairns last summer. In it you can catch a glimpse of Dr. Fredericks, an endocrinologist, the first specialist attached to the treatment center.
Congratulations to the WPI and all those who are attached to it. Special congratulations should be extended to Dr. Jamie Deckoff-Jones, for assembling this team of physicians. Her work and expertise will serve as a model for future clinical staffs working with this illness.(It is also worth viewing Dr. Deckoff-Jones' remarkable interview in this video.)
For those of you who want to read up on the meaning of "red letter day" go here.