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International ME/CFS Awareness Day Today

Posted May 12 2009 4:00pm
On July 26, 2006 I was standing at a podium in front of a group of people defending my dissertation. On my committee sat three world renowned scholars in my field. Two of them have published books and have spoken all over the world.

After I was done with my defense there was a flurry of excitement as my committee made comments. Clearly they were impressed. Here are some of the comments: "You have an obligation to write and publish about your topic." "Would you consider teaching here?" "I think we need to consider having your topic as part of the core curriculum." "This dissertation should be published." "I would like you to be part of a book I'm writing." And so on...

It was a day of great joy, a wonderful feeling of accomplishment. I heard things that people who defend their dissertation dream of hearing. After all everyone wants to hear that their dissertation is considered worthy of publishing.

My life got really busy causing me to postpone efforts at getting published. I did a post-doctoral residency program 60 miles away at a large HMO outpatient clinic working 40+ hours, commuting, and managing a growing private practice.

In May of 2007 I was feeling bad physically. I ended up leaving the post-doc 8 weeks early because of this seemingly mysterious illness. I was losing weight. At almost 5'9 my weight dropped below 129. I was too thin, I looked grey and had dark circles under my eyes. I went through a series of medical tests to rule out cancer that runs so prominently in my family. But everything came back normal.

In Sept of 2007 I was leaning against the wall of Dr. Kliman's office. I was so weak that talking was an effort. I said to Dr. Kliman I'm scared something is really wrong and I don't want to end up in the hospital. His response was "we might have to hospitalize you to find out what is wrong." It was my first appointment with him.

On Nov 2, 2007 I was told what this illness was. I'd been referred to a rheumatologist to rule out lupus. I'd prepared a 5 page list which described my symptoms, the onset, family medical history. He read it then came into the office and somberly told me I had a "viral like illness" "a chronic fatigue like illness though the label chronic fatigue is demeaning" "You have a very serious and debilitating illness that is like AIDS but not-that is like Hep C but not."

Like many people I had a complete misunderstanding of this illness so I felt a sense of relief that I *only* had a virus and that it was chronic fatigue syndrome. Thank goodness it was *only* chronic fatigue syndrome. I'd thought I was dying my symptoms were so severe so it was a relief to find out it was *only* CFS. Little did I know that it wasn't I who was dying-only my life as well as my hopes and dreams.

So all I needed was rest right?

The doctor could tell I wasn't getting it. When his enthusiasm didn't match mine, I was confused. I remember thinking it's almost like he's telling me I had cancer. All I have is a virus. A cold is a virus and those last just a few days! What is going on? I said what do I do? He said there is no cure but I suggest you look into the clinical trials occurring at Stanford. I was puzzled. What is going on here I thought to myself. Something must have clicked inside on a deeper level because I asked the doctor: "What will my quality of life be like?" I have no idea why I asked this question but his response sobered me. "I don't know" he replied quietly. It was the quiet somber way he replied that got my attention. I still didn't know what I was in for.

By the end of December I was housebound and unable to drive more than a few miles.

This illness is not about fatigue although that is part of it. This is a case where that little story we would say "sticks and stones may break our bones but names can never hurt me" isn't true. This is where names can hurt. The name chronic fatigue syndrome is misleading because it doesn't even begin to capture the essense of this illness.

ME/CFS is a chronic debilitating multi-systemic illness. It affects the neurological, cardiovascular, immune, endocrine systems. Some people have problems standing upright, other's are completely bedridden.

I've gone from someone who was able to write a dissertation to someone who struggled to puts together to create this blog entry. I can't access words, I couldn't figure out how to get the ME/CFS badge on my blog post, I can't get at the essence of what I want to say. My writing skills are drastically different than what is written in my dissertation.

I have lost my career. I no longer have an income as I have exhausted my state disability benefits. I have been denied twice by the Social Security Administration. I've gone through all of my life savings paying out of pocket medical expenses in order to have a doctor who knows about this illness.

And then there is the emotional component. The grief of losing a life has been intense. The depression almost intolerable at times.

I feel invisible with this illness.

In 1993, Tom Hennessy, a man with ME/CFS created ME/CFS Awareness Day. He chose May 12 in honor of Florence Nightingale who was born on this day. She developed ME/CFS in her thirties and was housebound and bedbound until she died.

There is much work to be done-research is lacking and hugely underfunded. The public is misinformed. Many physicians still believe it's psychosomatic (the jerks).

In the next few weeks I'll be including links on what people can do.

I'm nursing a migraine again (another symptom of this illness) which has made it difficult to blog but I wanted to do at least something in honor of today.
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