Hey folks,
I want to share with you my short essay about my experience with patients. I heard what you said before and I wanted to start at the source and head your advice. Thank you for that advice. And let me plug here too Simon (great analysis by the way S n S),
This is out now in one of the SMCI publications, Research 1st. I will write regularly there and share here occasionally, if ok...I wanted to contribute this one in particular because it was stimulated by you and your comments.
You can subscribe for free to this e-newsletter too if you wish:
http://solvecfs.org/get-involved/newsletters/
Yours,
Zaher
...............................................
As it appears in Research, 1st August 2015
http://solvecfs.org/newsletter/2015/august/
Albert Einstein once wrote that “
In theory, theory and practice are the same. In practice, they are not.” That is precisely what I learned during a three-day visit to the Bateman Horne Center in Salt Lake City, Utah, last week.
Settling into my new role at SMCI, I wished for my first engagement to be unfiltered and right at the source: face to face with patients and their families. The trip was an opportunity to do just that. It was also a chance to discuss research collaborations with Dr. Cindy Bateman, a thought leader known and beloved by many of you and a friend of our organization who made this visit possible through one gracious invitation.
This workshop of sorts shaped, and perhaps forever, my perspective on the illness, including the plight of the sick and the very sick. I learned from the visceral, no-frills analysis by patients that they have been seriously robbed from even simple pleasures. Things that many take for granted, like taking a stroll when you want to or carry a child in your arms—or even have a child. Almost all described an admixture of raw emotions and articulated their notion of dual pain, both the physiological kind and the other type that hurt just as much: pain born out of dismissal and skepticism by others, or from that protracted chase of an elusive cure.
I met Philip, a giant of a man misdiagnosed for years. He once “crashed” during a run to the local hardware store when his trip lasted a few minutes longer than he had budgeted for on a crowded shopping day. I also bonded with Matt, a still-giggly 16-year-old who has been visiting the clinic since he was 13. Taking one shower per week was his goal as he put it, and, no, that is not because he is 16! Carol and Joe, Matt’s parents, described how they found Matt face down on the bathroom floor one time. He thought he could do it alone—take a shower that is—yet was betrayed by his illness and the semblance of normalcy that day. I also spoke at length with Natalie and her husband. Natalie is very sick. And with what looked like to me a permanent smile tattooed on her face explained with much dignity that her wish is to go to the movies, just for a couple of hours, with her husband sometimes. To her, that is as challenging as climbing Mount Everest.
I have many more tales but very little space, friends, so to be continued…For now, I just say that despite the diversity of this group in age and function, the common and palpable thread is that indomitable spirit, coupled with a strong desire to solve this.
You are the reason we come to work every single day here at the Solve ME/CFS Initiative.
Yours,
Zaher Nahle
Vice President for Research and Scientific Programs
