TOUCHED BY LYME: MyLymeData is something you can do from home
This is Lyme Awareness Month. In recent years, May is when the Lyme community finds ways to raise the profile of Lyme disease in the public eye. It’s often a time of proclamations, media interviews, walk-a-thons, asking celebrities to suck on limes and shining green lights on public buildings.
Alas, the coronavirus pandemic has slammed the brakes on many activities like these.
But let me tell you about an enormous contribution to the cause that you can make right now. It won’t cost you anything and you don’t have to leave the house to do it.
If you have been diagnosed with Lyme disease—whether you’ve gotten better, worse, or in-between—we’d like you to enroll in MyLymeData. (Parents can enroll on behalf of their minor children. Or, if an adult patient is too sick to do it themselves, a family member can enroll for them. Families can also provide information on a Lyme patient who has died.)
Very few clinical studies of Lyme disease patients have ever been done. (The National Institutes of Health funded precisely three tiny studies, over 20 years ago, with nothing since.)
Over 12,000 have joined
So LymeDisease.org created this project in 2015, and since then, over 12,000 Lyme patients have enrolled in it. They have provided over three million data points on Lyme disease demographics, tick bites, diagnosis, symptoms, lab tests, co-infections, treatment and quality of life.
We work with academic researchers at the University of California, Los Angeles and the University of Washington to analyze this data. The National Science Foundation has funded the UCLA researchers to explore big data analytics using information from MyLymeData.
We’ve had one study published in a peer-reviewed journal already, and more are in the works.
We vet the researchers we work with and restrict how this data can be used. Many big data projects sell information to third parties like pharma or insurance companies. We do not! We make sure patient data is used only for the benefit of patients.
Here’s a video my daughter made several years ago when she enrolled in MyLymeData. Its message still stands today.
Won’t you join us as well?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.