May 19, 2009
CFSAC - Health and Human Services
To All Whom It Concerns:
My name is Sandra Cole. I currently live in Utah. I came down with
ME over 12 years ago following an illness while living in Alaska. I
am fully disabled by it. I lost my best earning years to this
disease and now I am at a time of normal retirement and I live
basically on social security.
I am a former university professor, an advanced nurse practitioner,
and a practicing attorney. I raised three sons on my own from the
time they were young and loved it. I also loved sports, camping,
music, traveling and many other things. I thought that I would die
on a tennis court at an elderly age. But, that is not to be.
I can name the date and time when I became ill. I was driving to
Anchorage for a doctor's appointment. I suddenly became nauseated
and very ill, and I had severe dysuria. That day I was put on
Septra, but although the illness itself abated after three days, the
dysuria remained. I followed that for over a year and a half locally
and at the University of Utah with a specialist. My urine was often
times infected, but I could feel the pain without infection. The
dysuria remains to this day anytime my ME is exacerbated. Within the
ensuing months I developed esophageal thrush and outbreaks of yeast
over many areas of my body. It took heavy doses of Fluconasole for
over three months to curb it. It too recurs to this day. I am not diabetic.
Next came breathing problems, stomach problems, and heavy
fatigue. When I dragged my leg and practically collapsed mowing a
small area of the lawn, I knew I had a neurological disease. I
quickly added aspiration (documented by a cookie swallow) and urgency
incontinency. And no, neurologists say that I do not have MS. My
Romberg has rarely been normal. Other neurological tests are also
abnormal on occasions. We have seen small lesions on my brain on
MRI's, along with decreased bloodflow. My cognitive problems began
and have remained all these years and never gets totally normal. It
is severe at times. Word retrieval can be appalling. A five year
old child can beat me at memory games, then and now. I can have loss
of speech – totally for as long as 45 minutes. Open ended questions
are difficult. I can understand the question and know that I have
the answer, but I cannot bring up the visual "forest of trees' to be
able to select the answers. I sit silently in frustration and
physician's and nurses often were impatient with me for not being
able to answer, even though sometimes that physician was a
neurologist at a major university. Memory problems worsen when I am
tired, but it does not require fatigue to do this. I've had word
salad, and many times pick up words that start with the same letter
but have a totally different meaning. I have blanked out on how I am
to get somewhere, even though I have been to that place many, many
times over the years. We all get somewhere by visualizing the entire
trip and when it doesn't come, you have to wait until it comes to
drive onward. You just sit in a parking lot.
I have a constant tinnitus, severe at times. Vertigo entered in
about 5 years ago, although light headedness, and frequent loss of
balance have been a problem since the onset. I have a loss of
hearing in my left ear. I get extremely sharp shooting pains which
can be anywhere on my body, but are worse when they occur in my eyes.
I built up over the years to being able to leave my home twice a
week, with three to four days of rest in between. Last January 2008
I caught either a viral or bacterial illness and was set back at
least five years. That was the first time that an illness had ever
caused an exacerbation since the onset. I simply could not regain
my energy. Then, in the Fall of 2008, I had a severe sinus infection
which blasted my asthma so that I required oxygen for the first time
for a month. It lasted over three months, during which time, I was
on antibiotics. During all of this my ME was very bad. However,
when I came out of this illness, my ME, to my amazement, was much
better. The only thing my physician and I could think of was that it
was the antibiotics. So, I am taking a long course of antibiotics as
we have no other way to go at the present time.
Initially, I had to find out on my own what I had. My neighbor, who
has MS, had Byron Hydes book, as she was initially thought to have
CFS. CFS was confirmed by a physician. I was lucky because I was
able to follow it on the web and to read numerous books about it. I
followed what the CDC has been doing for over ten years. I am
appalled at what is so apparently an attempt to place this
devastating illness in the psychosomatic category. I am with a
physician since last October who understands this illness for the
first time in my eleven years. It's a lonely place out there. The
web and knowing others with it, are the only comfort.
First: the DEFINITION: You cannot leave out the post physical or
mental exertional illness that occurs. IT IS THIS DISEASE. It
causes headaches, nausea, chest discomfort, breathing problems, utter
exhaustion, and aches and pains often to the point of requiring bed
rest. You cannot broaden the definition so that it includes every
one with fatigue and get consistent findings in studies. And
including fatigue in the name is devastating. By one good study
there are over a million people in the U.S. who have this. Not the
four million claimed by the CDC. By either number, it is an
epidemic. Broadening the scope of patients is just another tactic to
make us disappear amongst many other problems. I believe that
changing the NAME to ME will not cause confusion. Physicians and
researchers are supposed to be intelligent. When I was an advanced
nurse practitioner, several things changed names several times over
the years and it did not throw anyone. ME has a cacophony of
possible signs and symptoms, just as auto-immune diseases have. We
are not unusual in that sense. And we are very much like MS.
All studies that the CDC does within their own services or in sending
out studies (to not be done), should be shared with all. This
secrecy tells us they are doing something wrong, just as we can see
it. Their data base must be shared with all researchers and parties
interested. We, too, can read. Most of the time. I've lost that
ability occasionally as well.
The CDC has for years included on their website and in their
pamphlets that you should not do any tests for this disease. The
corollary to that is that "you just might find something." We found
that my CD4:CD8 ratio was off in favor of my body fighting viruses.
The pamphlets are still atrocious. Even though the CDC has admitted
that it is a devastating disease, they make it seem innocuous. I
will not give any of their pamphlets to anyone. I have taught many
physicians about this disease. Some are open, many are not.
We need a marker, which will occur only with a set definition.
Dr. Reeves must go as the head of this disease in the CDC. Please choose someone who truly has an interest in helping us. He is practicing in the early 1900's instead of the early twenty-first century. It is largely a woman's disease and this is clearly male chauvinism at its worst. Get someone younger and smarter and
dedicated, as this is a catastrophic disease. We are now in the
stages of "hysterical paralysis" in MS. Can we not move on?
Thank you for listening.
Please contact me if you have any questions.