2500 people have enrolled in MyLymeData. Have you?

Nobody knows the exact number of people in the US who have chronic Lyme disease. Many experts believe that a fair guess would be between 1 and 3 million. What we do know is that research into the experiences of people with chronic Lyme disease has been almost non-existent.

The National Institutes of Health has funded precisely three studies of chronic Lyme over the past two decades—and there are no new ones in the pipeline. The largest of the three enrolled a paltry 64 patients in its treatment section. (Compared to thousands of patients in similar studies for other diseases.) Small treatment trials like this don’t offer much useful information for a disease that is highly complex. Most treatment trials need thousands of patients to detect meaningful differences.

LymeDisease.org believes that it is time for patients to quit waiting for research that may never come and start seizing the bull by the horns ourselves. Two months ago we launched a project called MyLymeData. It’s a tool designed to survey a large number of Lyme patients to find out their real-world experiences with the illness. How long ago were they infected? Are they still sick or have they recovered? What treatments did they try? What helped? What didn’t help?

Today’s big data computer technology allows us to combine all that information and find patterns. This can help us learn more about the natural progression of the disease as well as which treatments work best.

We intend to enroll at least 10,000 people in MyLymeData. And we’re happy to report that we are one quarter of the way there! As I write this blog, over 2500 people have registered. We hope you’ll help us spread the word, so that those numbers will continue to grow.

One feature of MyLymeData is a world map showing where people in the survey were bitten by Lyme-infected ticks. (Of course, not everyone knows where they received a tick bite. But if they do, it’s on the map.)

At this time, only people enrolled in MyLymeData can access the map online. (We’re showing you a screenshot of the US portion of it below.) When you look at the actual map within MyLymeData, you’ll not only be able to zero in on your state, but to counties within that state.

The more people who sign up for MyLymeData, the more points will be indicated on this map. We will be publishing reports on this and other data in the months to come.

MyLymeData is for Lyme patients of all ages and circumstances within the United States. We encourage parents to enter data on behalf of their children. Strict privacy protocols are in place.

Click here to find out more about MyLymeData.

LYME POLICY WONK is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.