Building the science of wearables and pacing together

People living with complex chronic illnesses have long been overlooked and underserved by research. Visible was founded to help change that.

Today, we’re proud to share a major milestone: the publication of our first two peer-reviewed research papers, made possible by the people who use Visible every day.

Together, these studies explore how people use Visible to better understand and manage their energy, and examine whether heart-rate monitor-guided pacing can be studied safely and rigorously. In this blog, we’ll take you through both studies and share how these early findings are helping to move the science forward.

From lived experience to published evidence

From lived experience, we know that pacing is a valuable approach to managing symptoms. Pacing involves balancing activity and rest to stay within your energy limits, with the goal of reducing the risk and severity of post-exertional malaise (PEM). Pacing is also recognised in clinical guidance internationally: the U.S. Centers for Disease Control & Prevention (CDC) includes pacing and activity management in its ME/CFS and Long Covid materials, and the U.K. National Institute for Health and Care Excellence (NICE) guideline for ME/CFS recommends “energy management” to help prevent PEM.

The scientific literature of pacing is still developing. Researchers are working toward consistent definitions, reliable ways to measure adherence or “dose,” and shared outcomes such as PEM frequency, ability to do daily activities, or quality of life over time. Without this foundation, it’s hard to know what works best for whom, or how to design better tools and guidance.

That’s why rigorous research matters. Peer-reviewed studies make it possible to test ideas, refine methods and build the kind of evidence that can move care forward. At Visible, we’re committed to helping drive that progress.

Study 1: What people say about wearable technology and pacing

Our first paper explores how people use Visible to manage their energy. Approximately 1,300 Visible members completed a survey about how the app and armband affected their day-to-day self-management. Most participants identified as living with ME/CFS and/or Long Covid. This was an observational, descriptive study. It documents what people reported while using Visible and describes associations, but it can’t establish cause and effect.

These findings are very encouraging and show consistent patterns in people’s reports. To better isolate specific effects, future controlled studies can compare well-matched groups over time using established patient-reported outcome measures.

Study 2: Can we run a rigorous pacing trial with heart-rate monitors?

Our second paper is small, randomized controlled feasibility study that asks a practical question: can we safely and effectively run a larger trial of heart-rate monitor-guided pacing for ME/CFS and Long Covid?

Participants were randomly assigned to one of two groups:

• heart-rate monitor plus brief weekly guidance on using heart-rate cues for pacing
• weekly pacing advice without a heart-rate monitor

They completed questionnaires and interviews at eight weeks and six months. No serious safety issues were reported. Promisingly, people continued using the heart rate monitor, 89% at eight weeks and 66% at six months. This is a strong sign that the approach is acceptable and that people are able to stick with it.

Laying the groundwork for future research

Together, these studies support a simple but powerful idea: home monitoring and data-informed pacing can help people understand their health and make day-to-day decisions, and we can study this rigorously.

For people with energy-limiting conditions, the survey shows real-world benefits of using Visible with the wearable band: understanding their energy budget, feeling more in control of their illness, and experiencing fewer flares while using the app and wearable technology.

For researchers and clinicians, the feasibility study demonstrates that a randomized controlled trial of heart-rate monitor-guided pacing is both acceptable and safe, clearing the path for the kind of research we want to do next.

What's next?

We're continuing to collaborate with researchers to design future studies, including randomized controlled trials, the gold standard of medical evidence. Running random controlled trials is no small feat; they’re expensive and take years to do well. We can only take this step because of the Visible community — people willing to share their data and feedback to move the science forward.

We’re also committed to transparency, publishing methods, limitations and what the data can and cannot tell us, so that progress is shared openly and science can move forward together. Science is iterative and we're in this for the long term.

Thank you

This research wouldn't exist without Visible's members. Every person who tracks their data or shares feedback is part of a larger effort to improve understanding of and care for complex chronic illness. You’re not just managing your own health, you’re helping to make progress for everyone.

Onwards!

Harry