Chris Kraus Addresses Washington
My name is Chris Kraus and I am the Vice President of the Wisconsin ME/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.