I was fortunate enough to watch the first day of the CFSAC meeting on
October 29, although for health reasons I had to leave at 2 pm.
As I sat on the train on my way back to Delaware, I felt as if I were
perfectly still, but the world was in motion around me. I know no other
way to express the feeling of having Dr. Coffin of the National Cancer
Institute (NCI) - the most respected of all the NIH agencies - stand by
Dr. Peterson and speak of XMRV not as a possibility nor as a "maybe" -
but as a problem now known that must be dealt with.
And that process will be difficult, especially when you consider that
(thanks to so many conflicting definitions of CFS) there will be many
with a CFS diagnosis who do not have XMRV - at the same time there are
hundreds of thousands of patients out there with a XAND disease - with
XMRV and at least one of the co-factors that turns it into the disease XAND.
But the meeting was also profoundly moving in the number, quality, and
content of its testimony. So many wrote or spoke of serious matters -
from Dr. Ablashi to Staci Stevens on very important, strong medical
testimony, and the sleuthing of patients like Tom Kindlon, to the
heartbreaking stories of patients' lives - always a part of the
meetings, but it has been a decade since we heard so many.
I was wondering ... Since the testimony is in the public record, could
we publish it as a pamphlet? We should, of course, ask permission of the
authors and speakers. But if they said "yes", and we divided the
testimony into logical parts, wouldn't it make a great pamphlet, or even
a book?
Mary M. Schweitzer, Ph.D.
Sent from my Verizon Wireless BlackBerry
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