Dear forum friends,
I've written this LED Sensitivity Survey in a Google form to collect information about symptoms caused by LEDs in a systematic way: https://forms.gle/FrfXDcNeXFaii8t8A
This anonymous survey takes up to an hour to complete. It takes less time if your symptoms are minimal and less than 10 minutes for someone who does not have LED symptoms (it can be taken by unaffected people too). The LED health effects portion of the survey is fairly extensive - I went through many posts on this forum to try to make the questions as inclusive as I could, so that I could hopefully make it relevant to people other than myself. I've also included questions based on potentially related research or medical conditions.
I'm hoping that this survey will help us to more clearly figure out how much our symptoms and experiences overlap and how much they differ for differ people. One goal will be to figure out what kinds of questions are appropriate for neurologists to identify people who have issues with LEDs (to make a shorter survey in the future). The current neurological classifications for headaches may not fit our relatively new collection of symptoms well. Also, some of us may have symptoms that don't have anything to do with headaches. I hope that this survey will help us to better define the scope of what we're dealing with as a community.
I've started pushing for my neurologist to begin discussions about LED sensitivity in the neurological community. Once we have sufficient survey results, I also intend to push for public health research and will also likely advocate with politicians for public policy changes.
I intend to make the survey results public so that any of you can use them to do your own advocacy. I also intend to do some statistics on the survey responses and publish those findings online too for anyone's use.
I'm not identifying my current employer, since this survey research is not being done as part of my employment - it is completely a personal effort. However, because of post-graduate education in genetics at Johns Hopkins and Harvard, I have connections to the research and medical communities that I hope to leverage to advocate for future public health studies, clinical and basic research, and clinical awareness.
This survey is a first step in this effort so that all of us can have a better sense of the scope of what others in the community are dealing with.
If you save the link for the "Edit your response" page at the end of the survey, you'll be able to update your responses if your situation changes in the future - please do so.
I've tried to catch errors in the survey, but I'm far from perfect, especially when I have symptoms. Please let me know if you notice anything that should be fixed.
Please consider completing this survey. You are welcome to share the survey on other sites. I am very happy to answer any of your questions.
Thank you so much for your time!