Open The Long COVID-19 Wearable Device Study, Scripps Translational Science Institute, California

Study Overview

Brief Summary

To further characterize Long COVID-19 by collecting data from individuals who already own wearable devices or are provided with a wearable device along with basic and enhanced educational materials to determine if both can improve Long COVID-19 symptom management and post-exertional malaise.

Detailed Description

This study will have two components:

One study group will consist of up to 100,000 individuals who own wearable devices and are willing to share their data. These participants will be randomized and will receive educational materials. The investigators will study these dynamic wearable data along with participant survey responses that focus on diagnoses, symptoms, and quality of life to improve disease characterization and understanding of differences within and between individuals.

The other group in the randomized trial will participants who do not already own a wearable device. The study will distribute wearable devices and pacing educational materials to 500 individuals who do not already own them and experience post-exertional malaise, or the worsening of symptoms following exertion.

The investigators hypothesize that access to personalized information from a wearable device will enable participants to reduce post-exertional malaise. The investigators will include up to 25% individuals whose post-exertional malaise is caused by a condition other than Long COVID-19.

https://clinicaltrials.gov/study/NCT05741112

 

This part of their exploratory outcomes seems interesting:

"Cross-referencing heart rate patterns with participant-provided symptoms and diagnoses to identify correlations; identify underlying signals in surveys and/or wearable data that may help differentiate those who will recover within six months from those who will not recover for years; identify correlates with which individuals experience worsening symptoms over time, such as whether consistent reduced heart rate variability affects long-term symptoms as it does short-term symptoms."

 

I agree it's potentially useful. But reading about wearables studies just makes me wish someone would study how movement changes when people are beginning to exceed their activity capacity. My watch can tell me what swim stroke or training drill I'm doing, so it might be able, with the right software, be able to pick up the distinct changes in my movement (it becomes less controlled and more jerky) as I run out of energy. I trained in contemporary dance, so I've always been aware of/interested in this kind of thing.

If changes in movement profile turn out to be common in pwME, it could make it feasible to warn people before their rapidly fogging-up brains have picked up that they're in the danger zone. That would be a godsend, especially for new patients.

 

I cannot see how these devices can help with brain PEM. They do seem to offer ways to avoid overdoing it physically. And as @Kitty pointed out, for newbies what a potential godsend. But the longer Ive been sick, the more the onset of brain PEM destroys who I am and what I can tackle cognitively. Moreover, many of the more onerous triggers are cognitive or emotional or acts of simple concentration.

Putting a tool for that on the market on the market may be difficult.

Of course, I don't have LC. I think.

 

So, good question. And as far as I can see, maybe. Brain PEM is tricky, at least for me. Clearly, sometimes HR and HRV play a role in predicting or even correlating with brain PEM. Emotions would dove tail there. Maybe forced concentrating on a study or writing like I'm doing now, but I don't know - these would be subtle; can a device pick up on changes that nuanced? But passive focus can induce PEM in me if it's too long (e.g. a passenger in a car and looking at the scenery, or watching TV).

But maybe HR changes here, too. Wouldn't that be cool, and on a couple different levels. It might also suggest HR was involved in causing brain PEM, not just energy consumption.

Of course, you couldn't always avoid cognitive PEM, but you could manage its rate of incidence, in theory. Interesting thought. The trick would be not zombieing out.

Probably wishful thinking.

 

No, I suspect they can't. What I meant about rapidly fogging brains is that cognitive limitation often gets much worse as physical energy runs out, which can mean people are less aware of the warning signs. I don't know if this is universal, but I think it's fairly common.

Most of my cognitive fatigue is the result of physical activity, so anything that warned me would help. Even after years of experience, I still mess up.

I've never been convinced I understand cognitive PEM, though. Physical activity causes cognitive fatigue—loss of thinking capacity, reduced awareness, and very limited at word-finding and forming sentences—but that's not PEM.

I can get cognitive fatigue that's caused only by cognitive activity, but it doesn't result in significant symptoms the next day. I might struggle to maintain the reaction speed needed to play jigs and reels, but it's never the ill-tired caused by physical activity. (I have attention deficit disorder, though, so I rarely achieve deep concentra ... ooh look, a squirrel.)

 

Sorry if I'm detouring the device thing, but I NEVER EVER talk brain PEM with my doctors or familly. So this is a treat.

Physical exertion can cause PEM, we all know that and most of us endure it.

Brain exertion - yes, that's physical, but it's different - can cause pretty much the same set of PEM symptoms, and quicker. Acid in my body, like a poison. Balance is a joke. Headaches that wont go away. Exhaustion, but I cannot sleep. Extreme muddiness of thought, where clarity is rare and brain bandwidth reduced to one truncated task at a time. Joint and muscle pain and weakness.

Emotions speed up that awful descent. By far. Same with fierce concentration.

 

It sounds gruesome. Apart from the muddiness of thought, I don't think I've experienced it much from purely cognitive exertion—possibly because I don't do very much of it.

I don't get headache unless I have a virus or hay fever, and I've noticed that migraine and frequent headache sufferers seem to mention cognitive PEM often. Doesn't mean there's a link, but I guess it's a possibility.

Strong emotions do for me too, but I think a lot of it stems from the physical activity involved. The all-over muscle tension and restlessness in negative emotions; the exertion of belly-laughing, specially when I'm moving so much more anyway because I'm talking to someone. (I like to live alone, so conversation's not an everyday occurrence!)

 

Merged thread

Eric Topol at Scripps is involved.

Recruiting USA residents, only.

https://longcovid.scripps.edu/?ref=studyme

 

Interesting webinar with Scripps Research Senior Program Director Julia Moore Vogel, PhD, MBA on this study -

https://www.youtube.com/watch?v=3E9wPliUwG4