I got to talk to The CFSAC

Gradually I have seen improvement. I have not been able to do much on Halloween for the past three years because of my health. Last year I got all dressed up and went with my friend to go to a party and fell asleep in the car. Last Thursday,the day before Halloween, I had my piano students,ages 6-10, come over and we played music games and they performed. It was a lot of work keeping entertaining and keeping them on task but somehow I managed to do it. I was glad to not have a huge payback the next day and I was able to go out on Halloween.

I have started taking a Biology course online. I have a year to complete it so that works out perfectly with my situation. I'm hoping this coarse will help me get a better understanding of CFS as there are a lot of theories that the illness has something to do with things like abnormal cells and mitochondria dysfunction.

I would still like to get more stamina and function. When I get a bit more energy I'd like to start up a business. I make signs/plaques out of old music paper I have that dates back to the 19th century and then I stencil on music quotes. I have been able to sell some already. We will see what happens.

Last week on Tuesday and Wednesday the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC)met for 2days in Washington DC with the Assistant Secretary of Health.

CFIDS.org states that "CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of
programs to inform the public, health care professionals, and the biomedical, academic, and research communities about chronic fatigue syndrome advances."

The committee set a side time for public comments. They encouraged patients to give 5 minute comments on CFS regarding research, quality of life, and provider education.

I was not able to make it to Washington DC so instead I read a statement over the phone to the committee. Here is what I read to them:




I noticed that I was developing chronic fatigue in the Fall of 2000. I was 15, loving life, and excited about being in high school. Unfortunately, I was extremely tired, sometimes sleeping up to 20 hours a day. Along with the fatigue I had tender lymph nodes, a sore throat, body aches, and daily headaches. I ended up missing two months of school due to this condition. I gradually was able to go back to school, but with a lot of adjustments. My doctor had no idea what was wrong with me. Eventually we moved and found my current Dr., who is a chronic fatigue specialist. Over the last six years I've had my ups and downs with this illness. There was a two year period when it seemed the fatigue was going into remission and I was able to attend college. I thought I was done with my hypersomnia days. In 2004 my aunt, whom I was extremely close to passed away from kidney failure. The chronic fatigue came back accompanied by fibromyalgia pain.. I had mornings were I had to have help getting out of bed because I was in so much pain. I didn't know what was going on; I was a nineteen year old with the body of a 90 year old. I had to go home in the middle of the semester because I was so sick. I have not gotten my energy back to what it was since 2004.


I am very hesitant to tell people I have I have Chronic Fatigue Syndrome. I choose instead to tell them I have Virus Induced Central Nervous System Dysfunction. I get a completely different response than I do when I say I have CFS. There is negative connotation with CFS phrase. People don’t take you seriously. What if instead of Diabetes we called it “Chronic Urination Syndrome”. That would be insulting to people who have the illness. Chronic Fatigue Syndrome is a lot more complicated than just fatigue. In my case I have not only with post external mylasis, but digestive problems, muscle pain and aches, issues with my heart such as Orthostatic Intolerance, cognitive impairment, and the typical symptoms of CFS : sore throat, tender lymph nodes, and headaches. All of these symptoms are very common among CFS patients.

. My experiences with this illness have taught me a lot. I have had many friends and family members who “get it” and understand the struggles I have had. They are supportive. Unfortunately there have been some who don’t get and have said very ignorant and hurtful remarks. Some people don’t even realize what they are saying is hurtful and I have concluded that a lot of this has to do with the lack of knowledge, awareness, and education there is on this illness. So I plead with you to help the CFS community get the word out!

Doctor Lucinda Bateman recently stated in a CFS conference that “There are 2,400 people in the US with breast cancer. The NIH spent $690 million on Breast cancer research. The Susan G. Komen Foundation lists contributions of $242 million, with end of year cash: $184 million.

Muscular Dystrophy is classified as a "rare disease" affecting less than 200,000 of USA population. In September the Jerry Lewis telethon raised $65 million for the Muscular Dystrophy Association, 1.2 million more than last year.

According to CFIDS.org 1 million Americans are affected by CFS. Federal funding through NIH for CFS was $3-7 million/year. CDC (intramural research teams) $5 million/yr which was down from $9 million in 2005.

Bottom line? We need more research! As you can see this illness is real and affects so many people and is not a rare disease. We need more research and money to find a cure. This effort will give sufferers such as myself hope. I thank you for your time.