Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 4, 2008.
sorry i accidentally deleted this post!...ugh...this fog.
to learn more about her illness. Hopefully, we'll hear more about the results of this.
I kept going, "Nancy Kaiser... Nancy Kaiser- that name sounds familiar" but couldn't recall why. Was she ever online here at Prohealth?
I finally realized why her name is familiar and why she is Patient 00: NANCY KAISER-- A housewife and former golf-enthusiast who, after ten years of severe illness, became "Patient 00"--the first CFS sufferer to receive Ampligen. The drug raised Kaiser's I.Q. from its depressed level of 85 to 135 and restored her ability to function normally--even to play golf. When the FDA denied the manufacturer's application for expanded clinical trials, however, HEM took its operations to Europe, and American patients like Kaiser were cut off from their lifeline. Kaiser is once more bedridden.-- from Osler's Web by Hillary Johnson
And here's an article from 1990 about CFS featuring Nancy in Newsweek:
I did the math (with my foggy brain-lol) and I believe Nancy was 38 when she came down with CFIDS and this year she was 72.
May Nancy Kaiser, Patient 00, rest in peace. She is not in pain or discomfort anymore and I am sure we all find comfort in knowing that.
I feel for her family and hope she is in a better place. I do hope they spend some time doing an autopsy to find out more about CFS. Perhaps they can isolate the "virus" or whatever pathogen they have been chasing for all of these years. Still a sad day when anyone dies. Especially someone who has suffered so long with CFS...
i wonder how it must have been for her to have CFS when there was even less support for the disease than there is now. she had to have been really strong.
she ended up helping the cause so much. i am glad she did have some relief from the disease with ampligen, at least for a time.
very sad...she will be missed.
First, to her wonderful generous sister who posted this information for us all to see; my deepest sympathy for your loss.
She was our gain: her generosity of spirit, her courage, her determination to live a life of giving and mindfullness and sharing.
The NCF, IMHO, will be the .org that will find the appropriate treatment for M.E., so I have recently given a large donation; please, if you can, send them a dollar, a subscription fee (for the "Forum", a quarterly newsletter that will keep you riveted from beginning to end), or what you can afford.
I have read them from their inception in 1997, I believe. They are in a charitable business, with NO paid employees (and mANY have M.E.), are determined to go OUT of business as soon as they find a viable treatment.
I just love them, can you tell?
I send my sympathy to all who knew her personally, to those who followed her amazing, courageous story, to those who would aspire to be as giving if even in a smaller way.
We can't all be Nancy Kaiser; we can all aspire to emulate her life.
[This Message was Edited on 08/06/2008]
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