|
My name is Chris Kraus and I am the Vice
President of the Wisconsin CFS Association. This August, I will be
celebrating my 20-year anniversary of having CFS. Well, “celebrating”
isn’t the right word, but it is a milestone in my life. It’s a chance
to reflect. So, how have we done since 1984? In Wisconsin, our Board
of Directors is made up of volunteers who are all CFS patients. Many of
our board members have problems staying on course, thinking clearly,
verbalizing ideas, following through and staying healthy enough to
contribute the way we would like. So we struggle.
Every single thing that our Board does
takes a toll, so we have to prioritize. We publish the Lifeline; a well
respected quarterly newsletter in which we take a great deal of pride.
We also keep our Association infrastructure sound and solvent. And now
we have accepted the challenge of hosting the 2004 International AACFS
Conference. I don’t know where we get the nerve! I’ve been on the
Board of Directors for about 15 years and the biggest change I’ve seen
is that our goals are more ambitious.
For years, much of our effort went into
organizing CFS Awareness Day on May 12th. We’d man
information tables in hospitals and distribute our brochures and in the
hopes of informing some health professionals about CFS. We were
attacking a forest fire with squirt guns. We also spent years trying to
work within the system, meeting with administrators and doctors in
various medical centers. Unfortunately, it brought us no closer to
being able to offer our members the medical help they so desperately
need. Most patients don’t expect a cure, just some relief from symptoms
and maybe some understanding of the complexities of CFS.
My greatest disappointment is that we
haven’t come very far in twenty years. So many horribly ill patients
are still being mistreated and are slipping through the cracks. Our
Board members have heard some heartbreaking stories, and finally we
decided that enough is enough.
We are desperate enough and probably naïve
enough to believe our only chance for good patient care is to create a
clinic. The Panda clinic will treat illnesses such as Chronic Lyme,
Post Polio, Lupus, and Gulf War Syndrome as well as CFS. We don’t yet
have the collaboration we need with a medical group, but we are
confident that it will come. We are fund raising and brain storming and
recruiting and struggling. Panda clinic will offer more than medical
care. We have terrific ideas concerning intake procedures, social
services and care giving. We are very determined to make this clinic a
reality.
How can a group of patients go from putting
together a rather pathetic CFS Awareness Day to starting a clinic? I
think we chose to embrace the words of Margaret Mead:
“Never doubt that a small group of
thoughtful, committed citizens can change the world. Indeed, it is the
only thing that ever has.”
A more pertinent question is why? Why is
the CFS patient so shamefully under served by our amazingly advanced
medical community? Why is our only chance at good medical care going to
come though the efforts of these very compromised patients? I can get
so sick that it doesn’t occur to me to take some Tylenol or to push the
liquids or to call my doctor. I am often too sick to be in charge of my
own care. Yet I must be responsible to help change the way medicine is
being practiced for the CFS patient?
Twenty years is a long time to wait. The
science will eventually catch up and put together the last few pieces of
the CFS puzzle. And that science must be encouraged and generously
funded. In the mean time there has to be a wide spread, proactive
protocol that will treat symptoms and relieve some of the suffering.
CFS isn’t fatal, but it is robbing us of our lives. Don’t let us live
in the shadow. Please don’t let our lives slip by unnoticed.
Thank you.
|
