LED Sensitivity Survey

jen

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!

bkdo

Thank you for putting the time in to create this survey, I think it'll be very helpful to get these responses down and see if there are any common factors.

jen 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.

It would be awesome if we could get more people in the medical community to acknowledge this issue and hopefully make progress on a solution, thank you for utilizing your connections like that. Screens are only going to become more important for all of us as time goes on, and solving this would be a massive quality of life improvement for those of us who are affected.

thorpee

Good Idea Jen, i'll fill this out soon when I have the time 🙂

jen

thorpee bkdo

Thank you so much! I’m hoping a lot of people will find the time to take the survey in the next 2 weeks and then I’ll work on posting some preliminary data - probably after July 5th. I plan to keep the survey open indefinitely and keep updating, but if many people can please take the survey soon, it will make the results much more meaningful.

Thank you, everyone!

jen

I’m going to post the first set of data early next week. Please consider doing the survey this weekend if you haven’t yet. Thank you so much to everyone who has taken the time to participate! The data are quite interesting already and will only be better with more responses.

jen

I'm happy to report that I'm finally publishing a website that will automatically update with more LED Sensitivity Survey results and that contains an analysis of the early survey results and a literature review.

https://www.flickersense.org/

I'm sorry that this has taken me much, much longer to accomplish than I had anticipated. Between the initial survey results leading me down quite a few rabbit holes of needing to do more literature research and these web searches and work on the website restarting my symptoms every time I worked on the computer for any length of time, it has taken much longer than is ideal to have created this draft of the website. I still intend to proofread and edit the site more in upcoming days - now that it's published I can print it and manage the editing process more easily. However, the data from the survey is public and will continue to automatically update.

The take-home message is that while our symptoms seem to vary somewhat from person to person, they also overlap in ways that is consistent with the hypothesis that there are some similarities in the signaling that LED lights or screens create in our nervous systems. And we also collectively have a lot of symptom overlap with the symptoms of post-concussion syndrome, migraine, and dry eye disease, which have been suggested by others to share similar underlying nervous system signaling Diel et al. (2021). All of this together, I think is clear evidence that what all of us are experiencing is "real" (as we already knew ourselves) and I hope the survey results will help to convince others of the significance of this issue as well, especially as we gather more responses.

After proofreading the website a bit, I plan to start to reach out to people in the medical, scientific, and lighting engineering communities to try to raise awareness. Hopefully some of you may have some connections in the computer industry. I definitely also need to catch up now on what's been happening on this forum! I'm still dealing with high than normal amount of sensitivity and am trying not to be online too much, so feel free to message directly if you'd like to get my attention.

If you haven't taken the LED Sensitivity Survey yet, I encourage you to do so! And thank you so much to everyone who took the survey already and who does so in the future.

Mrak0020

jen Hi Jen!
I highly admire your approach and I have some info that might theoretically be useful for you.
I have issues with modern screens, that cannot be explained by LEDs. What is common for modern screens though, they use a lot of brightness enhancement technologies and anti-reflection technologies. My issue is within the light, but not within LEDs.
I am doing a less scientific, but more experimental research in another language, I will post all the findings here later. Right now there is not enough to post.
I am focusing on smartphones, but other screens have the issue as well. IPS screens are easy to disassemble, so we are disassembling IPS screens to find sources of the problem. IPS screens use polarizing film as the upper layer, and in one case a specific polarizing film was confirmed to give a part of symptoms:

When placed on the normal screen, symptoms developed on the normal screen;
When bad polarizing film was replaced to good, symptoms significantly lessened.

But that is only smaller part of a problem, it causes burning feeling, but not a pressure, so other ideas are under investigation right now. There is a bunch of Brightness Enhancement films of different types, they are used extensively on smartphones. Another potential part of a problem is some sort of a coating within the LCD matrix itself, on the transistors layer.
I have a hypothesis that light comes trough all these layers and acquires some qualities that cause the symptoms.
I suppose that what causes my problem have influence not on the nervous system directly, but on eyes, and when eyes (or eye muscles) take the damage it affects nervous system later. But I cant yet define its mechanics. Post-concussion syndrome you mentioned might be caused by accommodation/focus problems: as an example, people have a lot of unpleasant feelings wearing someone else's glasses. Dry eye symptoms are harder to explain, but in all the cases with my type of problem "dry eye" magically heals immediately after changing screen.

bkdo

jen

This is incredibly impressive, amazing work! I'll definitely be reading through the website to learn as much as I can.

Out of curiosity, have you tried occlusion therapy with an eyepatch? A good deal of us seem to have had moderate success with symptom reduction with it (Myself included), I'd be curious if you had a similar experience.

EDIT: I see that you addressed the eyepatch issue on the site, I'll DM you about that.

jen

Mrak0020 Thanks so much for sharing! I look forward to looking at your work!

You might be interested in the discussion of the survey results, where the current research is reviewed for how the nervous system can create the sensation of eye dryness when people's eyes aren't actually dry - this is a common finding for people with dry eye disease. Your experience of feeling eye dryness only when you're looking at a triggering screen fits with others' experiences of having some symptoms only when actually viewing the triggering light or screen.

jen

bkdo Thank you! I look forward to learning more about your experiences.

Mrak0020

jen Thank you, I will go through the findings. You've done an impressive website, collected a lot of information and there's a lot to go through, and I am happy to read everything!