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Nancy Kaiser had a dynamic personality that helped her cope with decades of suffering from CFIDS/ME. She had a great sense of humor and was someone whom you could trust when you spoke with her. Before she got sick, she was a housewife with three children who loved to play golf (although the rumors begun by HEM, now Hemispherx BioPharma saying she was "a professional golfer" were not true) and volunteered her time and high energy to several worthy causes.

Some just know of Nancy from the historical novel, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic or reading about her in Newsweek or Reader's Digest or seeing her in the documentary, Living Hell. Others met her as she battled to save her life from an illness that she knew as Chronic Epstein-Barr Virus, Myalgic Encephalomyelitis and many other names. What was evident was that Nancy was a severe patient. She had spent years trying to get an accurate diagnosis for her illness that so dramatically had changed her life yet some of the most famous medical clinics in the US had told her that her pain, seizures, brain lesions and disorientation were all in her head.
In the 1980's, over a decade ofsuffering with CFIDS/ME had left Nancy mainly wheelchair-bound. Her husband, Jim, read about a physician who was interested in neurological diseases and, when he got in touch with him, referred him to Daniel Peterson, M.D. who finally diagnosed her. In fact, it was the intervention of her state senator and Dr. Peterson that allowed her to be "Patient 00", the first patient to go on the experimental drug, Ampligen, in 1988, because her physician felt she was the most serious patient he had seen to date. He had already tried IV acyclovir and gamma globulin yet she continued to deteriorate. After dozens of physicians had told her she had a mental illness, tests found that Nancy's condition was actually equivalent to that of an advanced AIDS patient. Her IQ, once way above average, was barely above that of a person with deemed retarded. For three months, she received Ampligen in Nevada and then continued the infusions back home in New Mexico. And, indeed, she continued to improve for the first two years on the drug. After that, she found no improvement from the drug and, in fact, the infusions made her feel much worse. The manufacturers of the experimental drug, however, told her that if she discontinued the drug, she would die. Frightened, Nancy continued to take Ampligen even though she was forced to pay for the testing required out of pocket which came to thousands. Intimidated, she spoke, at the company's request, at several medical conferences and said how much Ampligen had helped but, after another 3 more years on the drug, she finally had the courage to discontinue taking it. Although there are many reports saying she was forced off the drug, it was Nancy's decision to stop the infusions because she found the drug not only was not helping but was, in fact, worsening her condition.

In spite of the predictions of the manufacturers of Ampligen, Nancy did not die when withdrawn from the drug but actually improved! A decade later, she urged the company and Dr. Peterson to do a longterm study of those who had first been on the drug who were still alive. She did not have success with that idea. Yet, she recently was urged to go back on the still experimental drug by the same physician who had diagnosed her years ago! She adamently declined the offer. For years, she had offered to have her phone number given out to CFIDS/ME patients who were considering a trial with the drug and she informed them that many who had been on Ampligen were now dead and many of the factual reports and test results given out about those patients by the manufacturers were not accurate. She wrote articles for The National Forum to try to set the record straight and was listed as an "essential volunteer" for the National CFIDS Foundation.

Nancy had become fast friends with many patients she met thorugh the years of her battle and kept in touch by telephone and e-mail until the very end. She shunned CFIDS/ME internet chat groups after several bad experiences. Her last was with a group where one member insisted she had died! When she responded that they must have her confused with another patient she had befriended, the reply was so callous that she decided that these groups with so little knowledge of the history of CFIDS/ME were not for her.
Nancy tried so many treatments to help improve her disease including antivirals and antibiotics. She underwent surgery for chiari malformation when a handful of physicians claimed that was what being erroneously called "CFS". [Ed. Note: Chiari Malformation is when the cerebellum descends out of the skull nad crowds out the spinal cord.] The recovery from that surgery was long and painful and she was not helped by any of the treatments.

Her husband, Jim, had also become sick years later and was eventually diagnosed with early onset Parkinson's. Eventually, as his condition worsened and his care became too much for Nancy, he was put into a nursing home but they remained close even when Jim had to be placed into hospice care where he remains today. Not even a year before her death, Nancy began a steady decline once again. She put her house up for sale and moved to a small cottage closer to her daughter, Laurie and her son-in-law, Greg, who had become indispensable as caregivers. Shortly after that, Nancy worsened dramatically and she had to go to a nursing home. She quickly became severe enough to be put into hospice. Once again, the medical establishment failed her as they pondered about what could have happened to cause this dramatic decline but never followed up with any testing or care. A trip to the ER of a hospital only resulted in Nancy being refused admission because the hospital claimed it had no spare beds! Nancy was returned to hospice care by ambulance and, shortly afterward, slipped into a coma until death finally ended her fierce struggle.

Nancy knew that only real science would ever change the course of CFIDS/ME and emphasized that fact to everyone. To all those who felt everyone should just learn to work together with the largest group, she wrote an article for the Forum called "It's not Bashin'---It's Passion" and explained that "cooperation, trust, direction, friendship and caring" of the board of the NCF displayed their passion and why the NCF "cannot walk in lockstop with the CAA (CFIDS Association of America)". She was a willing participant in many trials funded by the National CFIDS Foundation that brought us all closer to answers about CFIDS/ME and, upon her demise on June 15, 2008, contributions in her honored memory were directed to be sent to the NCF to be earmarked for research.

The many who knew Nancy treasured her friendship. Her voice and her long journey that she fought so passionately will long be remembered. She took delight in so many things despite the severity of her disease. She remained optimistic and was supportive of countless others feeling that, eventually, the truth would prevail and more understanding of this disease would come forth despite her own disapointment with another national support group's refusal to fund more important research and with our government's refusal to recognize that she suffered from a widespread, worldwide epidemic that the United Nation's World Health Organization calls myalgic encephalomyelitis. Although Nancy is missed by many she is, at long last, free of the pain that she had to endure for so long. We think she is still cheering us on to find the answers that will give us real relief.

[Ed. Note: One of the contributing authors, who wishes to remain anonymous, first met Nancy when both were on Ampligen. Several other staff members contributed to this article. Although her CFIDS diagnosis changed Nancy's world, she always stood her ground and fought the good fight.]

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606