Testimony of Laurel Bertand
To the Chronic Fatigue Syndrome Advisory Committee (CFSAC), October 30, 2009
I whisper: “Hi, My name is Laurel.”
Then my sister-in-law begins to read:
I have severe ME/CFS and am unable to speak above a whisper. I ask for your patience as my sister-in-law reads my testimony for me.
I greatly appreciate that you have allowed accommodations for me in order that my voice be heard today. It is rare for those of us most severely afflicted with this illness to be given the opportunity to speak.
I wanted to testify today for many reasons, but mostly because I feel the CDC and NIH have failed us. They have failed us because they have not taken CFS seriously enough, have not aggressively sought treatment or physical biomarkers, and have failed to properly inform the public and medical community that this disease can make a patient as sick as I am.
I don’t think I would have ever become bedridden had I received proper education about this illness from my doctors. Instead, I was only told to “push past it”. As a result, I am so severely ill I cannot leave my house, and have no real medical care. I am virtually invisible.
I came down with CFS nearly 13 years ago following a severe case of mononucleosis. I was 24 years old. After years of pushing my body beyond its capacity to continue working full-time, I had a setback so severe I ended up housebound and had to quit my job.
Not long after that, I had a setback that left me bedridden and unable to speak above a whisper. That was nearly 10 years ago. I have spent what were supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.
Please do not be mistaken; this has nothing to do with depression of any kind. I am not depressed, and I still fight to overcome my obstacles every minute of every day.
Prior to being stricken with CFS, I was fully healthy, energetic, ambitious young woman. I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources; first at a publishing company, then at a state university. I have traveled extensively, including a semester abroad and a month back-packing though Europe. After college, my friend and I spent 2 months driving 6,000 miles across the U.S.
I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. Its not that I no longer want to do these things. It’s that I cant.
Despite my situation, I was fortunate several years ago to have found a friend and companion online. He can relate to my struggles, and he brings me hope and laughter every day. He, too, has a severe case of CFS, and is wheelchair bound. And he, too, became ill at a young age (19) after a severe case of mononucleosis. He has been ill for nearly 25 years now.
Over the course of 5 years, we became best friends and fell in love. Last spring, he flew out to propose and I said yes! We are now thrilled to be engaged, and cant wait to be well enough to get married someday. We dream of having children, and raising a family. We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do.
A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD from Carnegie Mellon and might like to teach someday.
I hope to get my masters in speech pathology and work with special needs children. I also have aspirations of perhaps starting my own business.
I dream of the little things, too. I dream of someday being able to walk down the hallway or outside to stroll the yard. I dream of being able to take a bath, or even a long, hot shower, instead of a sponge bath. I dream of being self reliant. I bream of being able to read and play with my niece and nephew. I bream of being able to call and spend time with my friends and family, and speak for hours about their daily goings-on as we catch up on so many years lost. I dream of holidays spent with loved ones instead of all alone, as I am unable to travel, and my health cannot handle many visitors.
I dream of walking, and running, and dancing.
Most of all, I dream of the vibrant, glorious feeling of good health. And I strive for it every day.
In the meantime, I watch through my bedroom window as time slips by. The battle goes on.
I share all this with you today so that perhaps I can somehow get across to you that so much more needs to be done. More needs to be done to raise money for biophysical research, so that a biomarker, treatment options or cure may be found. More needs to be done to help raise awareness and understanding, so that those with CFS are not made to feel shamed for being ill. More needs to be done to educate doctors, so that more patients are not so easily dismissed or mistreated.
More needs to be done to tighten the case definition of CFS and firm up research criteria (such as adopting the Canadian Case Definition). More needs to be done to change the name to one that doesn’t trivialize the disease, nor simply focus on only one of its many symptoms. The word “fatigue” doesn’t come remotely close to describing what we experience. We are sick, not tired.
Above all, more needs to be done so that those of us stricken with the disease can get our lives back.