TO TABLE OF CONTENTS
the Chronicle editor
In the Fall 2003 issue, the Chronicle asked readers to
respond to this Hot Topic question: "Besides a cure, what do you hope the new
year will bring the CFIDS community?"
It is my ardent wish that the CFIDS community will learn all
about the St. Amand guaifenesin/salicylate-free program for the treatment of FM
and CFIDS. As a CFIDS patient who has been horribly ill since 1991 and who has
tried most everything within reason to no avail, I found significant relief of
my symptoms with this program. I have been on it now for over two years and have
seen the wonder of what this protocol is doing for me and others.
Annette Perry, California
(Editorís note: For more information about this treatment,
Before a cure, we need to get rid of the
humiliating, degrading "F" word. This "F" word does not describe our severe
disease. Until we change it, little serious research will take place and most of
the research that is done will be about "fatiguing illnesses." Most people think
we are lazy or crazy or both upon hearing the name of our illness. What does
fatigue mean, anyway? I canít even relate to that term, yet I have been deathly
ill with a "diagnosis" of chronic fatigue syndrome for over 13 years.
Anita Burgess, Florida
We need to come together
In the late 1980s
a CFIDS newsletter published a cartoon of an elephant being examined by five
blindfolded doctors, each concentrating on a different part of its anatomy. This
reflected the turmoil CFIDS was in. No one could draw a clear-cut consensus for
ailment or treatment ó or even define it with a specific name.
I believe that the cartoon would be just as relevant today.
CFIDS doctors, researchers, advocates and PWCs have not come together as a
working team. While individual efforts have produced much knowledge and should
be appreciated, the problem is that they are individual efforts. We have grants
and research dollars scattered in all areas and none bears dynamic effect in the
The CFIDS battle has become a power play. We have two or three
national advocacy groups contending for first place. Researcher is competing
with researcher for fame and recognition rather than pooling his or her findings
together with othersí. Support groups relay information from doctors and
national advocacy groups, taking a stand for one or another. Very few newly
diagnosed PWCs have continued where long-time advocates have left off.
Until we join hands across the country and allow what we do
know to amalgamate into a steadfast purpose, the problem will always remain an
enigma ó at the elephantís expense.
Estelle Rouleau, California