Nancy Kaiser (d. 15 June 2008 at the age of 72), is noted as being patient 00 in the Ampligen trials, the first to be given Ampligen for the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an illness she had since 1974. The treatment was spearheaded and supervised by Dr. Daniel Peterson in 1988, in Incline Village, Nevada and later continued in her hometown of Albuquerque, New Mexico. She tried many treatments prior to Ampligen, including IV acyclovir and gammaglobulin, yet her health continued to deteriorate. She improved for the first two years on Ampligen, then her improvements plateaued. After several more years, her health began to deteriorate again. She opted to stop Ampligen as she felt it was no longer helping her.
Conflicting reports tell of her experience with Ampligen. At first, she spoke of the benefits of Ampligen. Later, she soured to the drug and its manufacturing company, Hemispherx Biopharma, and discouraged patients from using it, going so far as to offer her phone number to potential trial subjects.Kaiser's journey with Ampligen is featured in Osler's Web, by Hillary Johnson:
"To those who had known Kaiser before she began receiving Ampligen, her transformation was astounding. 'I wish I had made videos of her when she arrived,' Peterson said. 'She couldn't walk. She could barely speak.' Albuquerque gynecologist John Slocumb agreed to continue to give Kaiser the intravenous drug infusions in his office. When Slocumb saw her after her three-month absence, he was deeply affected. 'I was in tears. To see her that way after following her for five or six years was quite a surprise,' he recalled. Kaiser said she did not mind being tethered to the drug. 'It is far better than being tethered to the disease,' she observed...Nancy Kaiser had been on Ampligen for eight months. Her IQ continued to recover; it was currently 136, having been 88 when therapy began and 118 after three months of infusions. Kaiser's seizures had ended completely, and her eyesight - she had been plagued by transient blindness - had returned to normal. A multitude of other clinical and laboratory signs revealed improvement, too. On the strength of Kaiser's remarkable progress, HEM Pharmaceuticals had given Peterson permission to give the drug to ten more people."In a 1990, Newsweek article, Kaiser recounts a similar story of her improvement after starting Ampligen:
"By 1987, Kaiser had been to 212 different experts. Her eyesight was fading and she was having a dozen minor seizures every day. She often lacked the strength to stand up. Her concentration and memory had so deteriorated that she couldn't get through a TV show. Her IQ was down by 22 points. Still, because she lacked a known disease, no one could quite accept that she was sick. Her weary family started pulling away, and doctors hinted that she might be better off in a mental institution. Eventually she found an expert who was familiar with the problem she described, and interested in helping. After trying several unsuccessful treatments, Kaiser found relief in an experimental AIDS drug, Ampligen. She now leads a nearly normal life, but her ordeal remains a fresh source of outrage. 'We're desperate for care,' she says of her fellow sufferers. 'The medical profession simply doesn't want us.'"
"According to Nancy Kaiser [she] appealed to Magic Johnson to try the drug, but he never wrote back; another patient wrote to Cher, who suffers from chronic fatigue, but she didn't respond either." reported Roger Burn, a blogger from Washington, DC.Almost twenty years after her first dose, Kaiser gave a different opinion of Ampligen in a National CFIDS Foundation online forum:
"The drug did help me initially and those participating in the original study were all so thrilled to be involved in a possible treatment for this disease. However, in time it started causing more and more problems. When I was taken off the drug, it was very apparent the drug is not the answer. When anyone asks me about Ampligen my answer is very simple and straight forward. In my opinion, I would never advise anyone to take the drug nor interact with Hemispherx. In one of their patents (patent # 5,958,718) statements were made about my improvement and background which were not true. I reported this to the FDA and there was never a return acknowledgment from the FDA. Also, there has never been a long term assessment regarding my health by Hemispherx as to the safety of this drug and I was on it for five year[s] -- yet they keep talking about the drugs [sic] long term safety record of Ampligen."
Obituary[edit | edit source]
Learn more[edit | edit source]
- Unsigned open letter from the "first patient taking Ampligen"
- CFS Central blog in honor of Nancy Kaiser
- Nov 12, 1990, Chronic Fatigue Syndrome by Staff in Newsweek
See also[edit | edit source]
References[edit | edit source]
- Newsweek Staff (Nov 12, 1990), "Chronic Fatigue Syndrome", Newsweek
- Johnson, H. (1996) Osler's Web. Crown. p.296
- Johnson, H. (1996) Osler's Web. Crown. p.337
- Newsweek staff. (1990, November 11). Chronic Fatigue Syndrome. Newsweek. Retrieved from http://www.newsweek.com/chronic-fatigue-syndrome-205712
- Kaiser, N.(2007). First Person: Reminiscing. Retrieved from http://www.ncf-net.org/forum/fall-4.htm
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.