Wednesday, May 19, 2010
It's Lyme Disease Awareness Month & I Wear My Bracelet Proudly
My 8+ Year Battle.
Presentation to the Institute of Medicine of the National Academies By The National Capital Lyme & Tick-Borne Disease Association
April 29, 2010
This afternoon we have heard some very important and impressive presentations. But they were presentations that were sterile scientific discussion. We must not forget that this scientific inquiry is motivated by the human experience of a devastating disease. It must continue to be motivated by that human experience as long as that motivation does not prejudice the scientific method.
Lyme disease patients face tremendous suffering and disability. One study found that chronic Lyme patients experience the quality of life of someone with congestive heart failure or osteoarthritis and suffer more impairment than someone living with type II diabetes or a recent heart attack. Despite the assertions of some researchers that we have the answers that we need, there is much to do in the area of Lyme research. There are many theories that have been studied, recommended further research and that deserve support to conclude their potential validity. As the Canadian Broadcasting Corporation (“CBC”) radio program: Ideas: The Bacteria Revolution reported over a decade ago: “Sorting out all the various symptoms caused by tick-borne diseases is no picnic, and both the detection and the treatment of Lyme are surrounded by controversy.”
Lyme disease patients are sick – sick of having their real life experience disclaimed as “anecdotal.” Researchers at Columbia University in New York City published a study in 2008 that added that the fatigue level in chronic Lyme disease patients is equal to that of multiple sclerosis.