Wearable Technology in the Management of Complex Chronic Illness: Preliminary Survey Results on Self-Reported Outcomes, 2025, Sawyer

[Dolphin]

Now published, see post #3
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https://www.researchsquare.com/article/rs-5389182/v1

Wearable Technology in the Management of Complex Chronic Illness: Preliminary Survey Results on Self-Reported Outcomes

Abbey Sawyer1

Rory Preston2

Harry Leeming2

Luke Martin-Fuller2

Amy Proal3

David Putrino1

Email

1 Icahn School of Medicine at Mount Sinai,

2 Visible Health Inc,

3 Polybio Research Foundation

Abstract

Chronic illnesses like Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome involve fluctuating symptoms, often worsened by exertion. Home monitoring technologies may support symptom tracking and self-management. A survey of 1,301 users of the Visible mobile application found that 77% experienced symptom improvements, 85% felt more in control, and 94% gained better understanding of their energy budget. Home-monitoring-based mobile applications may offer value in managing energy-limiting chronic conditions to achieve better self-management.

Background

Complex chronic illnesses like Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are marked by fluctuating symptoms, often exacerbated by physical, cognitive, or emotional exertion in a phenomenon known as post-exertional malaise (PEM). Home monitoring technologies offer potential benefits by enabling individuals to track symptoms and biometrics, aiding in disease self-management. However, the general effectiveness of such tools is still unknown.

Methods

A random sample of users of the Visible mobile application, aged 18 or older and with self-identified complex chronic illnesses such as LC or ME/CFS, were invited to complete an online survey regarding the impact of the app on their chronic disease self-management. Descriptive statistics related to the responses were analyzed and reported.

Results

The survey was distributed to 2,636 people, with 1,301 participants responding (49.3% response rate). The average age was 46 years, and 82% of respondents were female. Most participants reported having ME/CFS (42%), LC (31%), or both (18%). Of those with at least 30 days of data, 77% saw improvements in symptoms, 85% felt more in control of their illness, and 94% reported a better understanding of their energy budget.

Discussion and Conclusion

Home-monitoring based mobile applications may have utility in helping people with energy-limiting complex chronic illnesses to achieve better chronic disease self-management, and should be considered as a management strategy for people living with these conditions.

https://twitter.com/user/status/1865395414855229546

 

[Trish]

I find it strange that the abstract doesn't state what biometrics are monitored. I assume this is the Visible data, which as I understand it just monitors heart rate and heart rate variability, with patients subjectively recording their symptoms and activities. There is no objective monitoring of steps, time upright or other physical measures, which seems to me to greatly limit its value both for patients pacing and for scientific study.

And now I realise I should read the article before jumping to conclusions, but I'll leave my comment as I think it makes the point of how uninformative the abstract is.

 

[Mij]

Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes

Introduction: Complex chronic illnesses like Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are marked by fluctuating symptoms, often exacerbated by physical, cognitive, or emotional exertion in a phenomenon known as post-exertional malaise (PEM). Home monitoring technologies offer potential benefits by enabling individuals to track symptoms and biometrics, aiding in disease self-management. However, the general effectiveness of such tools is still unknown.

Methods: A random sample of users of the Visible mobile application (Visible Plus; requires both the armband and paid subscription), aged 18 or older and with self-identified complex chronic illnesses such as LC or ME/CFS, were invited to complete an online survey regarding the impact of the app on their chronic disease self-management. Descriptive statistics related to the responses were analyzed and reported.

Results: The survey was distributed to 2,636 people, with 1,301 participants responding (49.3% response rate). The average age was 46 years. 82% of respondents were female, 8% were male, 8% were non-binary, and 2% preferred not to say or preferred to self-describe. Participants self-identified as having ME/CFS only (n = 534, 42%), LC only (n = 396, 31%), ME/CFS and LC (n = 236, 18%), or another illness (n = 122, 10%). Of the n = 2,636 randomly selected subscribers, the mostly commonly listed “other illnesses” were Postural Orthostatic Tachycardia Syndrome (POTS, 6%), fibromyalgia (5.2%), Ehlers Danlos Syndrome (EDS; 1.7%) and Mast Cell Activation Syndrome (MCAS, 1.2%). Of those with at least 30 days of data, 77% reported seeing an improvements associated with app use, corresponding to 23% of all invited users, 85% (corresponding to 29% of all invited users) reported feeling somewhat (53%) or significantly (32%), and 94% (corresponding to 33% of all invited users) reported a better understanding of their energy budget.

Discussion: Home-monitoring based mobile applications are feasible and acceptable for a motivated subgroup of people with energy-limiting complex chronic illnesses, and are associated with self-reported benefits in energy management and participation in daily activities. The findings of this study should be interpreted as descriptive and hypothesis-generating and do not represent clinically significant effects, underscoring the need for randomized controlled trials to formally evaluate efficacy. Future studies should incorporate a comparison group to better differentiate intervention effects from improvements gained through lived experience.

 

[Chandelier]

From Bluesky:

October 18, 2025



Boo-trino Lab

@putrinolab.bsky.social



Great to see this published and out there. It's a simple paper that shows us that folks with #LongCOVID, #MECFS and other complex chronic illnesses can benefit from using symptom tracking apps like Visible, designed FOR patients, BY patients.



Let's break down some of the findings: - The survey was sent to 2636 active users on the Visible platform, and 1301 responded.

This translates to a roughly 50% response rate, which is very high for app-based consumer surveys (average usually sits around 5-10%), which means the chance of non-response bias (the risk that there is a silent majority not answering your questions in the way that the responders are) will be much lower than most consumer surveys that are conducted.



- The breakdown of respondents:

- 42% #MECFS

- 31% #LongCOVID

- 18% both ME/CFS and Long COVID

- 10% other complex chronic illness diagnoses such as EDS, fibromyalgia, POTS, MCAS and chronic Lyme.

- Average age of respondent: 46

- 82% of the respondents were female



When we dug into how people felt after using the app at least 30 days:

- 85% of users reported improved control of their illness

- 94 said that their understanding of their energy budget was improved

- 90% said that their day-to-day energy management was improved.

- 60% said they had less, and less severe, PEM episodes





Some people also experienced benefits to how much they could move about and exert themselves without PEM kicking in, but this was not as widely seen in the whole cohort.

This makes sense to us: some people who experienced strong benefits from app-enhanced pacing will find that they can now do more safely because they have a better understanding of their triggers and their energy budget.

Some people will not have this experience: even though the app helps them to better understand their energy budget, they still may not be able to stick to a pacing protocol (because of work or family life), they haven't been using the app long enough to make actionable changes to their schedule or they don't know how (the app only monitors, it is not an intervention), or they are simply too severe to change much about their setup even as they learn more about their illness.



This is a first step in our work with data from the @visible_health platform and we are barely scratching the surface of what is possible with powerful datasets of this nature. However, from a 50,000 ft view, these data show us that in a majority of patients interviewed, tracking and using self-derived data improves chronic disease self-management.



This is consistent with the existing literature and has been broadly seen in other chronic conditions such as stroke, diabetes, COPD as well as in performance enhancement products like Whoop - the key is that the platforms need to be designed by folks with sufficient domain knowledge about the user community to drive meaningful change. In this case, @visible_health was designed and built by people with lived experience and I can't imagine a better group to be leading the way as experts in lived experience of chronic conditions such as #LongCOVID and #MECFS.

Thanks to all my co-authors on this project and to our non-Sinai friends @rorpreston.bsky.social, Luke Martin-Fuller and Harry Leeming. More to come!