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
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.]