From Nancy Kaiser's daughter (may be reposted):
The passing of pioneer advocate Nancy Kaiser
It is with great sadness for our family and friends to have lost my mom, Nancy,
to end stages of CFIDS [on] June 14, 2008. The last 6 months my mom has
declined in health. I was blessed to have moved her close to me and we spent a
lot of quality time together. Her illness drastically changed in the last two weeks
as she was put in Hospice care. What ever the neurological event was the finally
took her is unknown at this point, but we will be finding out the cause of death.
To all her friends in the CFIDS community, long term friends from growing up
in Olean and to those who were here in Albuquerque, you all were such an
important part of her world. Being so disabled, her computer and phone
conversations were her lifeline. To our family who live all over the country, it was
family bonds that she treasured most. She would have done any thing for anyone
if capable. She will be missed by so many. The part you need to know is
that she was at without pain in a coma for several days. As I stood and
looked at her, I saw peace for the first time in 30 some years. This is difficult
for my dad as his health is declining as well.
I know my mom is in heaven looking down on all of us right now. I hope you
know the impact you made on her life as she shared so many stories with me.
My mom was a fighter until the end. She always hoped that her long journey
with CFIDS would help someone else. That was her goal. I pray you are all
able to take away many good memories of Nancy, known as patient "00". My
brother Jim is here to help with lots of things we need to take care of. My mom's
wishes were cremation and no public service. No flowers please, but if you
wish to honor my mother, please make contributions in her name to:
The National CFIDS Foundation,
103 Aletha Rd, Needham, MA 02492-3931.
* * *
It's often been said that AIDS was not taken seriously until patients began to die of it and they could no longer write it off as depression or psychosomatic. Well, our first-generation patients are starting to die of CFS and its complications. Maybe now we can get the world's attention as autopsies show physiological abnormalities that can only be explained by CFS.