Date sent:      	Mon, 22 Oct 2001 


Chronic Fatigue Syndrome, Ampligen, and Quality of Life: A
Phenomenological Perspective

J of Chronic Fatigue Syndrome, Vol. 8. No. 3/4. 2001. pp.
117-121

Christopher R. Snell, PhD; Staci R. Stevens, MA; J. Mark
VanNess, PhD

Christopher R. Snell and J. Mark VanNess are affiliated
with the Department of Sport Sciences, University of the Pacific, 3601
Pacific Avenue, Stockton, CA 95211-0197. Staci R. Stevens is affiliated
with the Workwell Foundation, P.O. Box 114, Ripon. CA 95366.

Address correspondence to: J. Mark VanNess, PhD, Department of Sport
Sciences, University of the Pacific, 3601 Pacific Avenue. Stockton. CA
95211-0197

SUMMARY. The purpose of this investigation was to identify significant
quality-of-life issues for two women previously diagnosed with chronic
fatigue syndrome (CFS), and their families. Both women were participants
in a cost-recovery, clinical trial of the antiviral and immunomodulatory
drug, Ampligen.

A qualitative, case study approach was adopted to access information not
normally available from clinical trials. Specifically, semi-structured,
in-depth interviews were conducted with the CFS patients, and their
spouses, to discover if these families perceived any changes in their
patterns of daily living contingent with participation in the Ampligen
trial. Patient diaries were also analyzed for the purpose of
triangulation.

Content analysis of the interview transcripts and diary entries revealed
a number of significant quality of life improvements for the women and
their families, for which they perceived the drug therapy responsible.
After an initial acclimation period, and with the exception of the day
when the drug was administered, both women reported a reduction in pain,
increased energy levels, and improved cognitive functioning. They each
cited numerous cases to illustrate their improvement.


KEYWORDS. Chronic fatigue syndrome, quality of life, Ampligen,
qualitative research


INTRODUCTION
Because of the dramatic changes in a person's quality of life contingent
with the onset of Chronic Fatigue Syndrome (CFS), any potential treatment
that can ameliorate the symptoms of the disease and restore some element
of normalcy to the daily existence of CFS patients is of great
significance to these individuals and all those interested in CFS. The
primary purpose of this paper is to describe the response of two
long-time CFS sufferers to treatment with the drug Ampligen (poly I:poly
C12,U).

Ampligen is a specific form of mismatched, double-stranded ribonucleic
acid (dsRNA) with antiviral and immune modulatory properties that has
been effective in providing long-lasting clinical benefit to severely
afflicted CFS patients (1). While the etiology and mechanisms of CFS are
still the subject of much debate, persistent viral infection and immune
system dysfunction are pathologies common to many CFS patients (2). There
is evidence to suggest that the viral defense pathways of certain CFS
patients are significantly impaired and that viral disruption of energy
metabolism may be the cellular basis of fatigue in CFS (3,4). The
effectiveness of an immunomodulatory drug such as Ampligen does lend some
support to this hypothesis.

The phenomenological perspective adopted here details the experiences of
two women participating in a cost-recovery, clinical trial of the drug,
both of whom believe that Ampligen therapy has resulted in significantly
improved quality of life for them and their families. The self-reported
improvements in the quality of life now experienced by these women might
even be interpreted as evidence of remission from CFS.


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