CFIDS Association, Inc.
I would ask to be read into the record of public comments at your upcoming
meeting of the Federal Advisory Committee, May 17 and 18, 2007:
I am a member of the VT CFIDS Association and have had a disabling level
of CFIDS for 12 years.
1) Concerning my treatment experience, at first I met with denial and
ignorance in regard to my two main symptoms, memory loss and daily fatigue.
It was several years of struggling on my own, during which I had to
give up my work as a counselor and social worker. To give you a few
examples of the seriousness of my symptoms, I could not remember what
had just been said or whom I was speaking to. I got lost driving to
familiar places on a regular basis and had 4 accidents in one year.
Skipping ahead to 1998, I finally found a doctor who recognized my CFIDS
and prescribed the first two helpful drugs that I use: low-dose cortisol
(Cortef) for energy and help with immune function during the day and
Trazodone for help in insomnia, maintaining sleep at night. When she
left her practice in 2001, I searched for more than a year before I
found another doctor who was basically informed and responsive to my
physical problems from CFIDS. He has been willing to try treatments
for my symptoms and refer me to other specialists. I am very fortunate
to have encountered both of these physicians in a medical environment
of general prejudice and ignorance about CFIDS. To go to those practitioners
is profoundly discouraging and it sets me back for a long time afterwards
in terms of seeking other help.
2) What is needed for physician education? I think at the minimum to
inform medical students of the studies made so far which do affirm the
existence and something of the nature of this illness. Beyond that,
I think education might be re-tooled to help medical students diagnose
and treat high-level systemic disorders. CFIDS is known as a neuro-endocrine-immune
system disorder. To teach doctors to understand and deal with this cross-specialty
disorder and to learn the most current information on ways to test for
this and treat it, or at least the symptoms, would be most helpful.
It seems to me that doctors are still too oriented to single cause problems
in lower level bodily systems or organs that they can more easily treat.
Or perhaps the traditional specializations work against dealing with
systemic disorders which span many of them. Certainly it makes no sense
for CFIDS to be designated as a problem in Rheumatology. If there were
one specialty that ought to be well informed and working on this problem,
it is Neurology, as that deals with the top of the hierarchy of physical
systems and is definitely involved in CFIDS.
3) What is needed for research? A thorough-going effort to identify
the nature of CFIDS--that is, what is it and how it works in the body.This
is far more important than further wild-goose chases searching for a
single hypothetical first cause. As far as I am aware, the research
so far supports many possible avenues for developing this syndrome,
and most of those causes, if not all of them, are irreversible and untreatable
anyway. So let the focus be on what it is and how it works. Then, on
better ways to identify it and treat it. Further, a top-down approach
would be best, in my view. I mean to focus on the neurological components,
perhaps damage to the Reticular Activating System and the hypothalamus.
Clearly there is some damage or serious dysfuntion in those areas of
the brain, which then lead, in a hierarchical fashion, to a dysfunctional
slow brain, a low-functioning HPA axis and compromised immune function.
I would hope that research proposals would have to demonstrate comprehension
of the systemic nature of this illness and then show how studying the
particular aspect they are proposing to study relates to the whole systemic
disorder. This would vastly improve what has so far been a piecemeal
and scattered pursuit of minor factors and sometimes trivial effects.
Many years have passed since this syndrome was first recognized and
almost all the people affected by it are still sick and struggling every
day of their lives. These are people in their middle, working, child-rearing
years, for the most part, but include young people too who will face
a lifetime of serious disability if a comprehensive, intelligent effort
in research and education is not undertaken.
I appreciate the purposes of your committee and hope that you make the
clearest, most focussed recommendations that you can to improve the
current situation. I would gladly offer myself as a research subject
if that would improve things for others.
Thank you for your attention!
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