Consumer Involvement
Vicki Russell
As a person who spent several years battling Lyme disease and other tick-borne illnesses, and as a member of the Oklahoma Lyme Disease Support Group, I was quite honored to be nominated and selected to serve as a consumer peer reviewer for the Tick-Borne Disease Research Program (TBDRP) the first year of its formation.
In the state of Oklahoma, and likely in other states, Lyme disease is not considered to be an endemic tick-borne disease, therefore it is very difficult to find doctors who will diagnose and/or treat for Lyme disease. In many states there is still a vast need for Lyme disease education among health care professionals and the general public to better communicate knowledge of the clinical manifestations of Lyme disease, as well as the available diagnostic testing schemes and treatment regimens. Many tick-borne diseases can be treated early, but they can also become chronic, disabling illnesses that completely alter one�s life. The manifestations of Lyme disease, including fatigue and cognitive impairments, can result in the loss of the ability to work and the loss of insurance coverage for needed therapies. Family and friends often do not understand how sick an individual is because they may �look fine�.
Having recently retired from a career as a science teacher, I found the peer review of TBDRP research proposals to be both exhilarating and challenging! How exciting to read and evaluate proposals from scientists seeking to find better ways to prevent tick-borne diseases, invent new diagnostic tests, or learn more about the pathogenesis of these diseases. The commitment shown in these proposals and in the panel discussions about this promising research is greatly needed and will lead to improved and new treatments for those suffering from tick-borne illnesses, including Lyme disease.
The culmination of weeks of hard work spent reviewing the research proposals was to participate on the scientific peer review panel and meet with scientist reviewers to discuss and score each of the submitted proposals. Working with such a professional group with diverse research and clinical experience was very enlightening and provided insight into the scientific approaches toward combating tick-borne illnesses. The scientist reviewers were genuinely interested in what we as consumer reviewers were able to share about real-life issues faced by people dealing with these illnesses and the relevance of the proposals to the community of those living with Lyme disease and other tick-borne diseases. My time spent serving the TBDRP was a very positive, educational and rewarding experience!
Last updated Tuesday, November 12, 2024