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.
9 comments:
"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."
We have been waiting since September for you to offer up one - just ONE - article from a reliable source to back up this assine comment you keep making that according to you "is often said".
But don't worry, we aren't holding our breath as we know you cannot produce something that does not exist.
Support for the statement, from those who saw it first-hand, was provided. You refused to accept it. As I recall, JoAnn offered to go to a university medical library to perform the hands-on research that I am physically unable to do and you refused to accept her offer as well, proving that you don't actually want to see the proof.
Here's one more attempt to satisfy you, from a world-renowned CFS expert:
David S. Bell, M.D., "The parallels in the history of the recognition of AIDS as a specific disease and the recognition of CFIDS are remarkable. For years physicians and health care administrators said that no illness could explain [the symptoms of AIDS]. Because patients with AIDS were dying, it was finally and somewhat reluctantly agreed that this constellation of unusual symptoms and events was not psychosomatic. And with the discovery of the HIV virus, a theory could be put forward that explained these findings." "The Doctor's Guide to Chronic Fatigue Syndrome", pages 17-18.
Dr. Mary Schweitzer sent the following response:
The best reference would be "And The Band Played On." My memory of the movie (and the whole nightmare) is that at first, because there was no single CAUSE that could be pointed to, nobody wanted to believe the disparate illnesses that we have come to call AIDS (Karposi's sarcoma, AIDS pneumonia, for example) were related.
When it began to get attention, it was as a "gay" disease - GRID - or Gay-Related Immune Disease.
There were researchers at NIH who thought you could find 80 percent of AIDS cases in the blood banks just by screening for hepatitis, but the blood banks refused - and that is why many hemophiliacs died.
You know, dearie, if you were truly this great AIDS expert you hold yourself out to be you wouldn't need to demand proof that AIDS was initially considered to be a psychological problem because you would have read that in ANY history of AIDS. Or perhaps known it from living through the progression of disease recognition with friends who were suffering and no one could tell them why.
Go back to your lab, Brat and stop casting aspersions on this brave lady who struggles daily with pain and limitations beyond your wildest imagination before I make a voodoo doll and have you struck with the same disease you choose to belittle. See how you like it when doctors tell you that you're imagining things because they haven't a test for the virus that you have therefore have no proof that virus exists.
I've seen the effects of this disease first-hand on people I love who have no reason to pretend to be ill. Until you've seen it with your own eyes - not just what you imagine from reading this blog - you have no right to say rude things about patients or accuse them of lying.
Karen, there is great wisdom in the statement "Never try to teach a pig to sing; it only wastes your time and annoys the pig". Why are you trying to conduct music lessons with the brat? Even if amenable to them I susupect she would have a tin ear anyway. If she won't listen to statements from Harvard credentialed doctors, nor show any refuting facts to your claims, nor accept my offers to research and prove your statments, then shake the dust from your sandals and let her wallow.
Sorry, Jo, but you need to take another Zoology class to learn the difference between a pig and an ass. :)
It's quite clear which we're dealing with here ... the one too stubborn and too stupid to admit the validity of any viewpoint other than her own. Like most mules, I think LabRat could benefit from a good whipping to dissuade her from her pig-headed notion that she, and only she, knows anything about something that happened in the early 80s when she was still in diapers, and those of us who lived through it and remember what we were hearing are mistaken because we don't agree with her.
I beg to differ but in no text of Randy Shilt's publication will you find any reference to AIDS/HIV being thought of as any type of psych problem. I can assure you of that.
When AIDS first appeared in the population the virus rapidly manifested in physical carnage on its victims. People who were fine one month could easily be in ICUs dying the next month. Living beyond 6-18 months of contacting AIDS was for the most part unheard of. Much different than today.
It was not until 1987-1990 that AIDS/HIV started to attack slower once a person was infected, and that was due to the virus mutating. And as a test to detect HIV was available and used by 1987 it became easy to diagnose.
Not to criticize, but it almost appears that Dr. Mary Schweitzer did not actually read Mr. Shilt's book but merely saw the movie made of it. Yet even in the film there was never any indication as to it being thought of as anything else than a true "disease". Even when AIDS was called GRID there was never any question as to it being a physical illness.
There simply was no time period in which AIDS was confused with depression or such due to the fact that the physical impact was almost immediate.
Once again a woman dies of this terrible disease and all that you can do is utilize the post to continue your vendetta against Karen instead of expressing sympathy for the patient and her family.
You people are really SICK!
You claim to be doctors but have no compassion.
If they really were medical students, as they claim, and they really were interested in the truth about CFS, you'd think they would apply for one of those New Jersey medical school scholarships. :)
http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/06/23/cfs-scholarship-for-medical-students--nj-patients-needed-for-research/2101
But I don't think they're actually medical students, and I don't think they want to hear that the truth about CFS is not what they think it is. They're quite happy being ignorant and abusive, and will remain so until they are professionally ostracized for being behind the times when CFS is universally accepted as a biological disorder. That day is coming quite soon, with all the research advances that have been made in the last few years.
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