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

Andy

Andy

Retired committee member
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. :thumbsup: 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.
 
Kitty said:
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.
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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.
 
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They are including people with PEM from other conditions, not just LC.

duncan said:
I cannot see how these devices can help with brain PEM.
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I wonder whether predicting onset of cognitive PEM in time to avert it might be helped by a mix of the physical activity tracking and heart rate, heart rate variabllity and correlating that with symptoms including cognitive PEM over time, so the individual learns the signals to look out for.
 
Trish said:
I wonder whether predicting onset of cognitive PEM in time to avert it might be helped by a mix of the physical activity tracking and heart rate, heart rate variabllity and correlating that with symptoms including cognitive PEM over time, so the individual learns the signals to look out for.
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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. :)
 
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duncan said:
I cannot see how these devices can help with brain PEM.
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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.

Trish said:
I wonder whether predicting onset of cognitive PEM in time to avert it might be helped by a mix of the physical activity tracking and heart rate, heart rate variabllity and correlating that with symptoms including cognitive PEM over time, so the individual learns the signals to look out for.
Click to expand...

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.)
 
Kitty said:
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.
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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.
 
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duncan said:
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. 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.
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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.

duncan said:
Emotions speed up that awful descent.
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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!)
 
https://longcovid.scripps.edu/wp-content/uploads/2024/04/Long-COVID-Wearable-Study-flyer-202402.pdf

We aim to see whether wearable devices improve Long COVID symptom management. Recent studies have shown that activity management can be an effective method of managing and treating symptoms of Long COVID. To continue to gain knowledge of this poorly understood condition, we are planning The Long COVID Wearable Study. This one-year study will gather survey and wearable data in a bid to better manage symptoms and empower study participants to manage their health.

Study inclusion criteria:
Is at least 18 years old
Resides in the United States
Has a self/and or physician diagnosis of: Long COVID (based on the WHO working definition), ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome, self-diagnosis based on IOM criteria), and/or POTS (Postural Orthostatic Tachycardia Syndrome).
Is interested in tools to manage ME/CFS, POTS, and/or Long COVID symptoms.
Owns a wearable device they are willing to use for this study or does not own a device and agrees to utilize a study-provided one.
Agrees to wear the device throughout the study period, share the data with the study, and sync data at least weekly.
Has access to a smartphone or tablet to enable syncing wearable data and viewing device feedback.
Agrees to disclose involvement in other ME/CFS, POTS, and/or Long COVID interventions such as medical treatment, self-management, and other interventional studies.
Agrees to complete at least 75% of the study surveys.

If you qualify for the Long COVID Wearables Study, you could:
Help researchers understand how different people experience Long COVID. This could help researchers find therapies that work for everyone with Long COVID. Receive a Garmin wearable device at no cost to track your heart rate, activity, and energy levels. Receive information designed by Long COVID patients and researchers to help you manage your symptoms. Learn how your lifestyle, actions, and environment could affect your symptoms - and potentially discover ways to manage them.
 
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