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May is an important month for the complex chronic illness community. It's Ehlers-Danlos Syndrome Awareness Month, and May 12 is International ME/CFS and Fibromyalgia Awareness Day.

For people living with these conditions, many of us at Visible included, these awareness moments can feel like a strange mix of validation, hope, and frustration.

To mark them this year, we asked our members to share what life with these conditions actually feels like, what they wish more people understood, and what needs to change. Their answers, in their own words, are below.

Exhaustion, pain, unpredictability

When asked what daily life with these conditions actually feels like, themes of exhaustion, pain, and unpredictability came up repeatedly.

"Living with fibromyalgia is unpredictable. You can take every precaution and the pain still comes. On bad days, my body feels like it's on fire, like someone's taking a hammer to my bones." — Lizzie, living with Fibromyalgia

"Day to day it feels like I'm drowning. Like I'm walking through treacle all the time. I mourn who I used to be before getting sick and I miss her." — Mia, living with ME/CFS

"How I feel doesn't make sense to me either. Some days I can go on long hikes; some days I need mobility aids for a short walk. No matter how much I plan, I can't control it. It's not a problem of will or dedication." — Riley, living with hEDS

Misunderstood and minimized

Many people described the frustration of having complex and fluctuating symptoms minimised or misunderstood.

"Much of the focus on EDS, whether in articles or innocent assumptions, is that it's 'just hypermobility'. But it's actually a body-wide condition that affects the autonomic and gastric systems, dental health, skin, and more. There are also lots of different types of EDS with their own symptoms and outcomes, we're not all the same." — Elle, living with EDS and ME/CFS

“People assume that if you managed to leave the house, go to work, or look okay for an hour, you must be fine. They don’t see the recovery afterwards, or how much planning and energy something small can take.” — Matt, living with ME/CFS

Across these responses is a shared experience of not being fully understood. These aren’t simply gaps in public understanding, they reflect deeper assumptions that place responsibility back on the person who’s unwell: try harder, push through, plan better.

That’s why awareness days matter. They create space to challenge misinformation and make the realities of living with these conditions more visible.

The complicated reality of awareness days

"I'm touched every year by how much precious energy people with ME use to raise awareness. At the same time it's hard not to feel disheartened that we're still fighting to be heard year after year." — Anonymous, living with ME/CFS

Across members' responses, there was gratitude for the solidarity and visibility that awareness days can bring, but also frustration at how misunderstood and unsupported complex chronic illnesses still are, and how much still needs to change.

The change people want to see

Beyond awareness itself, many people spoke about the need for earlier diagnosis, better support, and more investment in research.

1. Earlier and more accessible diagnosis

“I spent years being told my symptoms were anxiety, stress, or ‘just part of getting older’. By the time I was finally diagnosed, I was very worn down by how hard I’d had to fight to be taken seriously.” — John, living with EDS

John’s experience isn’t unusual. For hypermobile EDS, the most common subtype of Ehlers-Danlos syndrome, there is currently no definitive test, and delays to diagnosis are common. ME/CFS and fibromyalgia are similarly challenging to diagnose: there is no single test for either, and symptoms often overlap with other illnesses. Many people move through long referral pathways and repeated investigations before they get an answer. Some people never get a formal diagnosis.

2. Better support and care

“A tailored diagnosis and care roadmap for healthcare providers to follow would be a great start.” — Elle, living with EDS and ME/CFS

For a lot of people, the diagnosis isn't the end of the search. It's the start of a different one: looking for care that actually fits.

What members often described instead was being handed leaflets, generic advice, and links to websites before being sent home to manage on their own. People understood that there is not yet a clear treatment pathway for these conditions, but many still wanted guidance and symptom management that takes these illnesses seriously and reflects how unpredictable they can be.

3. More research

“Real change will only come when we all have better healthcare. I’d like to see much more investment in biomedical research, and easier ways to get diagnosed and treated.” — Anonymous, living with ME/CFS.

Many people wanted to see greater investment in research and a deeper understanding of conditions. They spoke about the frustration of living with illnesses that remain relatively under-researched despite the severity and impact of their symptoms.

There were calls for larger and longer-term studies, more investment in understanding the biological mechanisms involved, and research that reflects the full spectrum of illness severity, including people who are too unwell to participate in traditional clinic-based studies.

From awareness to action

Awareness days and months create visibility and connection for people living with complex chronic illness. But the people we spoke to were also clear about what needs to change: earlier diagnosis, better support, and more research for complex chronic illnesses.

Thank you to everyone who shared their experiences with us. Your experiences are what drives the work we do at Visible year-round.

We know that for everyone living with these conditions, progress cannot come soon enough.

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This month marks six years since the World Health Organization declared COVID-19 a global pandemic.

Millions of people around the world have developed Long Covid. Studies suggest that around 6% of people who have had COVID-19 go on to experience long-term symptoms.¹

Over the past six years, researchers have been trying to answer two big questions:

• Why does this happen?
• How can we treat it?

In a recent episode of the Make Visible podcast, we spoke with researchers and clinicians about progress so far. The picture is mixed: we’ve learned a lot, but treatments are still limited. The quotes in this blog are drawn from those conversations.

How far we’ve come

Research into Long Covid has grown quickly.

Researchers around the world are joining forces to study Long Covid. Experts in the brain, immune system, nervous system and many other fields are working together, helping scientific progress move faster than ever.

"We've come an awfully long way," says Dr Binita Kane, Consultant Respiratory Physician and Founder of The Long Covid Clinic. "There are some incredible researchers out there."

Researchers have a few main ideas about what might be causing Long Covid, including:

• the virus staying in the body for longer than expected
• the immune system becoming overactive
• other viruses in the body becoming active again
• changes to gut health

None of these ideas have been ruled out, but there isn’t one clear answer yet.

Why aren’t there any approved treatments yet?

Even though understanding has moved forward, there are still very few approved treatments.

One reason is funding. Many researchers say there isn’t enough investment to move quickly from research into treatments.

"I think the frustration for patients is that it is not translating fast enough into treatments, and that's just a direct result of a lack of investment from governments," says Dr Kane. "We've got the scientists, we've got the researchers, we've got the patient community. We've got all the skills we need to do this, but it needs funding."

Another reason is that Long Covid is complex. It can affect many different parts of the body, and symptoms can vary widely from person to person. That means it’s very unlikely there will be one single cause or one single treatment. Professor Mark Faghy describes the body like a set of connected parts:

“What we’re trying to do is to understand the limitations of each of those cogs, how they’re being impacted, and how they’re working together or not working together,” he says.

What treatments are being tested?

As understanding has improved, researchers have begun testing different treatments. These include:

• drugs that affect the immune system
• low-dose medications used for pain or inflammation
• drugs that affect metabolism
• treatments that target the nervous system

Each approach is grounded in a different theory about what drives Long Covid. Most are still in small-scale studies, so we don't yet know which will work best, or for whom. But for the first time, multiple potential treatment paths are being explored in parallel, and that in itself is a significant step forward.

Building a clearer picture

In the early years of the pandemic, research was fast but scattered. Now, scientists are beginning to bring together the findings and identify where the gaps remain.

“It's a really good time to consolidate what we've learned,” says Faghy. “Where do we go next?”

There is also growing collaboration. New organizations are connecting researchers across borders, and teams are increasingly working together rather than in isolation. The German government has also committed half a billion euros over ten years for research into infection-associated conditions.

“I know there's a lot of activity happening globally at the minute to review where we are and shape the direction moving forward.” says Faghy.

This is starting to shift the field from isolated studies to a more connected, strategic research ecosystem.

Visible’s role

Alongside this, real-world patient data is playing an increasing role in research. Visible contributes by combining day-to-day symptom tracking with research data collection. More than 25,000 members have opted into research studies, contributing over 437 million data points and enabling large-scale analyses. The app is also being used in studies and clinical trials, including Professor Mark Faghy’s antiviral trial, to help track how patients are doing over time.

Looking forward

Six years is a long time to live with Long Covid. For many people, it has meant years without answers, treatment, or support.

But in research terms, this is still early. And in that time, our understanding has come a long way.

Researchers now have a clearer sense of what to investigate next, and how to move the field forward. That progress has only been possible because people living with Long Covid have continued to share their experiences, take part in research, and push for better understanding.

At Visible, we’re committed to being part of that progress, working towards a world where people living with Long Covid finally receive the care and support they deserve. We’re incredibly grateful to our members, and to the wider Long Covid community, for the role you continue to play in moving this forward.

To hear the full conversations with the researchers and clinicians quoted in this piece, listen to the Six Years of Long Covid episode of the Make Visible podcast.

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A low-energy summary of what's new (scroll down to read the full update):

What’s changed

• PacePoints are now front and center as a colored arc that fills up through the day.
• Heart rate now sits just below as an easier to read line, with your current zone highlighted.
• New “Your pacing day” chart on the PacePoints page shows how PacePoints build over time.
  

What’s stayed the same

• Tap your heart rate to view your chart and tag activities as before.
• Everything else on the Today page is in the same place (coherent breathing, morning/evening/monthly check-ins).

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Visible is here to help make pacing easier. We help you understand how your body is doing, so you don’t have to figure it out on your own.

This month, we’re improving how we do that with two updates: a refreshed Today page and a new pacing chart, designed for a clearer, more streamlined view of your pacing day. Both have been carefully tested and shaped with members before rolling out more widely.

The refreshed Today page

The new design is built on two principles: clarity and simplicity. PacePoints are now front and center, with heart rate shown just below.

The colored arc fills up as you accumulate PacePoints throughout the day. The white circle is your PaceSetter, moving steadily across the arc to guide you in spreading your energy more evenly.

Heart rate is now shown as a line with colored zones. Your current zone is highlighted so it’s easier to check at a glance.

Together, these updates help you better understand your energy and make pacing decisions with more confidence.

A new way to look back on your day

We're also introducing “Your pacing day”, a new chart that shows how your PacePoints have built up across the day. You can find it on your PacePoints page (tap your PacePoints on the Today page).

The diagonal line is your PaceSetter, showing what a steady day looks like. The thicker line shows how you’ve used your PacePoints so far that day. A steeper slope means a busier period, while a gentler slope means you've been taking it easier.

You can tap and hold anywhere on the chart to see your PacePoints total at any point in the day.

One member shared how the chart had supported better pacing decisions:

“This has stopped me from making a second trip on [the] same day to pick up more of my things, when I saw how far out from the target I was. Previously with only a numeric total to look at, I might have thought I could get away with it. With the chart it was obvious I was kidding myself!”

Built with you, every step of the way

Visible has always been built with the people who use it, and this update is no exception.

We shared early versions of the new Today page with a small group of members and improved it based on what you told us. We then rolled it out to 10% of members, gathering feedback and making further changes before landing on the final design.

Here's the type of thing you told us:

“On bad brain fog days, I don’t have the energy to interpret lots of information. This feels calmer and simpler. I can glance once and immediately understand where I am.”

“The arc for PacePoints makes more sense to me. It feels like the shape of a day. And it feels right that heart rate is shown as a line too. I really like the way it’s color-coded.”

A big thank you to everyone who took the time to try the new designs and share feedback.

Rollout timeline: explore at your own pace

Change takes time to adapt to, so we’re rolling this update out gradually.

Here’s what to expect

• Over the next few days, the new pacing chart will roll out to everyone. You’ll need to update to the latest version of the app to see it.
• At the same time, we’ll begin rolling out the refreshed Today page. It will be available to all members by early March. Again, you’ll need the latest app version to access it.
• Until April, you’ll be able to switch between the old and refreshed Today page using the arc button in the top right, so you can explore it at your own pace.
• In early April, we’ll release another app update that removes the button to switch between designs, and the refreshed Today page will become the only version available.

We’d encourage you to spend some time in the refreshed design so it feels familiar before it becomes the only version available.

A few things to know

• You'll need the latest version of the app to access the updates.
• New users will see the refreshed design immediately.

Tell us what you think

After you’ve spent a few days with the refreshed design, we’d love to hear your thoughts. You’ll find a feedback card at the bottom of the new Today page, available until early April. That’s the best place to share feedback, and our team is reviewing every response that comes in.

Looking forward

Living with a complex chronic illness asks a lot of you every day. We designed this update to make one part of that load a little lighter, and we're excited for you to explore it.

Every update we make is a step toward our goal: building the best possible tools to support you. Thank you for being part of this journey with us.

Onwards!

The Visible Team

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We’re very proud to be working with Professor Mark Faghy at the University of Derby. His ground-breaking ERASE-LC trial, the UK’s first Long Covid antiviral drug study, is shedding new light on post-viral recovery.

Mark and his team are exploring whether a treatment first used in acute COVID can support people still living with ongoing symptoms from COVID, and how Visible can help measure recovery.

We spoke to Mark about his research and the role Visible is playing in the ERASE-LC trial.

How did you come to study Long Covid?

Before the pandemic, our research looked at how people recover from pneumonia. We were trying to understand why some patients still felt unwell weeks after being told they were “clinically recovered.” We realised there was a slower, under-recognised stage of recovery that wasn’t being addressed.

When COVID emerged, I was preparing a major funding application for this work. The call was cancelled, but we were able to quickly adapt our research framework to focus on what became known as Long Covid. Since then, our team has carried out several projects to understand what causes ongoing symptoms and how we can better support people with Long Covid.

What is your research trying to find out?

Our ERASE-LC trial is studying why some people don’t fully recover after COVID and whether the antiviral drug Remdesivir might help. The research examines the immune system, inflammation and other changes in the body to understand the causes of ongoing symptoms and whether antiviral treatment could support recovery.

How does Visible help you do your research?

We are collecting an extensive range of data, from blood samples and symptom questionnaires to physiologic assessments and functional tests, to build a complete picture of participants’ condition before and after treatment.

However, traditional testing can’t always capture the reality of living with Long Covid. Many patients conserve energy before appointments, meaning lab data might not reflect daily experience. That’s where Visible can play a crucial role. Participants wear Visible for more than 50 days, providing continuous real-world data on heart rate, variability and symptom patterns.

“Traditional tests give us a snapshot, not the full picture of how someone functions day-to-day,” explains Professor Faghy. “That’s where tools like Visible make such a difference, they let us see what’s happening between clinic visits, in the patient’s real world.”

Who are you collaborating with on this study?

This project is incredibly collaborative. We’re working with colleagues at University Hospitals Derby and Burton, University of Plymouth and the University of Exeter, and a network of national and international partners.

All of our research is heavily shaped by continual input and engagement from people with lived experience. Patients have been involved at every stage of the process, from shaping the study design to defining what meaningful recovery looks like. That collaboration ensures we’re focusing on outcomes that matter most to people with Long Covid.

The philosophy is simple: share openly, talk to everyone and don’t hold secrets. Complex problems like Long Covid need true interdisciplinary, collaborative and transparent approaches.

What’s next for your research?

Right now, we’re in the analysis phase of ERASE-LC, looking for signs of physiological change and markers of improvement. If the signals are positive, we’ll move toward a larger, randomized controlled trial. We’re preparing a major grant application, due in December, to scale up this work.

Beyond that, I’m passionate about refining how we measure recovery. Traditional lab metrics don’t always capture what patients experience. We need to develop tools and frameworks that connect scientific data with lived experience, where technology like Visible will continue to play an essential role.

What motivates you in this work?

The patients. Without question. I’ve had people stop me in the street years after participating in earlier studies to tell me how much it meant that someone listened. There’s a lot of frustration in this field - political resistance, funding hurdles - but I’m stubborn. I believe we can and have to find answers if we keep collaborating and stay grounded in what patients tell us.

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Building the science of wearable technology 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 of pacing forward.

These studies were carried out in partnership with world-leading research partners the Icahn School of Medicine at Mount Sinai’s Cohen Center and the University of Liverpool (UK), together with an extended network of research and community partners.*

From lived experience to published evidence

Pacing involves balancing activity and rest to stay within your energy limits, with the goal of reducing symptom flare-ups (such as post-exertional malaise, or PEM).  It is an approach grounded in lived experience, developed and refined by people managing their conditions day to day, and has since been recognised in clinical guidance. 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 evidence on pacing is still developing. Researchers are working toward consistent definitions, reliable ways to measure “dose,” and ways to track outcomes. As this evidence base grows, it will help us better understand what works best for different people and continue to improve tools and guidance over time.

At Visible, we’re committed to contributing to this growing understanding of pacing and how it can best support people in practice.

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 wearable technology?

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 complex chronic illness, 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

*The wider network of research and community partners included Polybio Research Foundation, Physios for ME (UK), University of the Pacific, Stockport ME Support Group (UK), and ME Association (UK), whose collaboration and support made this research possible.

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We're now making Visible Armband 2.0 available to wear on the wrist. Starting today, all Visible members will be able to buy wrist straps, and new members will receive a wrist strap with their sensor instead of an arm strap.

We're also simplifying the product name from Visible Armband 2.0 to Visible Band 2.0 to reflect this.

Same reliable tracking, more comfort

Earlier this year, we began testing the sensor with a wrist strap. We started internally, then with a beta group and now more widely with our members. The wrist strap has also been available as an optional accessory for testing by Visible members since July 2025.

Feedback from our community has been clear: the wrist strap is working better for many. In particular, members:

• found the wrist strap more comfortable
• said it was more discreet in social and professional settings
• noted that it was easier to put on and take off (important for members with limited mobility and fatigue)

Our mission is to build the best tools possible for people with complex chronic conditions.  Over the past year, member feedback on the wrist strap has shown us that it makes a real difference in comfort and ease of use. Based on this, we’re making the wrist strap available for all members and the default option for new members.

This switch won’t affect the price, which will stay the same.

Available in the Visible Shop

If you’re already a member and you'd like to use a wrist strap with your sensor, you can purchase one at a discounted rate from the Visible Shop. Use the code WRISTSTRAP25 for 25% off.

Still love the arm strap? It will continue to be available as an optional accessory in the Visible Shop and our software will continue to support it.

Thanks as always for your support.

Onwards!

Harry

Update 9th December: The clinical trials feature has been temporarily removed from the Visible app while we work on updates to the feature.

This week, we’re launching a brand-new feature: Clinical trials near you.

In the Visible app, you can now view clinical trials that match your diagnosis and location, and reach out directly to researchers to take part.

Connecting more people with clinical trials is another way we can advance our collective understanding of complex illnesses. This helps accelerate the development of much-needed treatments.

Bringing more visibility to clinical trials

We know many patients want to contribute to research. Yet too often, opportunities are poorly advertised, difficult to access, or hard to understand. We want to change that.

That's why the Visible app now clearly displays relevant clinical trials based on your location and diagnosis. Each trial summary outlines the research goals, eligibility criteria, and how to get involved. We've also simplified your connection to researchers with pre-filled enrolment messages.

With over 200,000 users, we can meaningfully fast-track lengthy recruitment timelines for research studies. This is another step in our mission to help advance our understanding of these conditions and towards making these invisible illnesses, visible.

Find clinical trials near you in the Visible app. Select ‘Community’ and go to the ‘Research’ section.

Building the evidence base for change

Alongside our new clinical trials feature, we’re continuing our work to build the infrastructure that will help us research and better understand these conditions:

• Visible data science: Our dedicated data science team is continuously developing innovative algorithms to measure, predict, and manage symptoms more effectively, from digital biomarkers to symptom flare-up predictions.
• Collaborative studies: We host in-app research studies that give researchers valuable insights from Visible's anonymised user data. Recent examples include studies exploring the impact of the menstrual cycle, and ongoing research on how atmospheric conditions affect symptom severity (learn more here).
• Supporting individual clinical trials: Behind the scenes, Visible’s wearable technology is being integrated into clinical trials, helping researchers to track participants’ health during treatments. Most recently, participants used Visible while testing a new antiviral treatment.

What's coming next?

We’re working on some exciting updates to the Visible app to make it even more personalized to your health and seamless to use. Upcoming updates include:

• Automated stability scores (available soon for Visible Band 2.0 users)
• Improved pacing visuals and information
• More accurate heart rate zones

We also have sleep tracking in early access for Visible Band 2.0 users. You can enroll via the early access hub in the profile tab of your Visible app. If you don’t see the early access hub in your app, reach out to our support team in the app.

We can't wait to bring these improvements to you.

Onwards!

Harry

Clinical trials shown in Visible are automatically pulled from ClinicalTrials.gov, an international registry for medical research. Every trial listed there has been reviewed and approved by an independent ethics or institutional review board to help ensure it meets participant safety and ethical standards. Trials are shown based on your location and diagnosis, so you may see many trials or none at all. Visible isn’t affiliated with, and doesn’t endorse, any individual trial listed, and we don’t independently re-review studies beyond this existing ethics approval process. In the app, we make this clear and ask users to confirm this before they’re connected to a researcher.

After a long delay, the UK Government has finally published its Delivery Plan for ME/CFS. As many had anticipated, it fails to meet the scale of the challenge.

The ongoing failure to address ME/CFS in the UK

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multi-system condition that affects around 1.35 million people in the UK, including many with post-Covid onset. It ranks among the lowest of all chronic illnesses in quality-of-life scores.

Care for those most severely affected remains critically inadequate, described in a 2024 Prevention of Future Deaths report as “non-existent.” Emerging treatments for symptom management are largely confined to the private sector and accessible only to those who can afford them.

Public investment for research into the condition has long been dangerously inadequate. Between 2015 and 2020, UK public research funding for ME/CFS totalled just £6 million, compared to £53 million for Parkinson’s and £22 million for multiple sclerosis, despite each conditions affecting only half as many people as ME/CFS prior to the post-Covid increase in cases.

A closer look at the plan

Last week, the Department of Health and Social Care published its long-awaited cross-government Delivery plan for ME/CFS. Originally commissioned in 2022 by then Health Secretary Sajid Javid, the plan aimed to improve attitudes, accelerate research, and improve outcomes for people with ME/CFS. A public consultation process helped shape its development.

Small wins

The plan makes some important acknowledgements, including:

• Serious patient safety concerns, including recent preventable deaths, stating that such outcomes should be “never events”
• The current inadequacies in NHS care, particularly for those with Very Severe ME/CFS
• The urgent need for more research
• The necessity to improve healthcare professional education and training on ME/CFS

After decades of marginalisation, public recognition of these systemic challenges is progress, and a credit to sustained advocacy from patient communities, charities, clinicians, and researchers.

Big gaps

But beyond these acknowledgements, the plan offers little substance:

• No new funding to match the scale of unmet need in care or research
• No clear strategy for improving NHS services, aside from an optional e-learning module for NHS staff
• Very few specific targets or timelines, making it difficult to assess progress or hold the plan accountable

While the plan mentions a specialist service for Very Severe ME/CFS, concrete steps are deferred to future funding decisions. Other patient priorities including support for off-label treatments in current clinical care and the integration of tech-enabled support (which we were, of course, hoping to see) are notably absent.

The bottom line

It’s clear the plan does not meet the scale or urgency of the problem. The issues facing the ME/CFS community are entrenched and systemic. Addressing them will require bold, coordinated action supported by adequate investment - none of which is reflected in the plan.

How Visible is driving research into ME/CFS‍

The plan’s limited ambition is particularly evident in its approach to research. The headline NIHR initiative on repurposed medications offers just £200,000 grants, a tiny sum in the context of research funding. The invitation to apply to existing pots of funding is unconvincing given how little that has achieved historically. Two named projects (HERITAGE and PRIME), valued at a combined £2.2 million, are welcome but were independently developed and not initiated by the plan itself.

At Visible, we’re not waiting.  We’ve already committed nearly 10 times more than the government’s £200k NIHR grant, building the tools, technology, and infrastructure needed to support rigorous, scalable research into ME/CFS and other complex chronic illnesses.

More than 25,000 individuals have contributed data through Visible, working in collaboration with leading partners including Imperial College London, Mount Sinai, and the Patient-Led Research Collaborative. Over 400 million health data points have been voluntary shared, creating an unprecedented real-world, longitudinal data on ME/CFS and related conditions.

We’re also supporting clinical trials, including an upcoming antiviral study with the University of Derby. Next week, we’ll be announcing a new initiative to fast-track recruitment into clinical trials.  

Together, we’re building the evidence base needed to drive better understanding, more effective treatments, and ultimately, improved outcomes for people with ME/CFS.

Tech-enabled solutions

Another missed opportunity in the Delivery Plan is the lack of support for tech-enabled solutions. Their potential has been underscored in two recent reports - Lord Darzi’s The Future State of Health and Healthcare in 2035 and the NHS 10 Year Health Plan. Both highlight the role of wearables and remote monitoring in facilitating real-time health tracking, early intervention, and personalised support for those with chronic conditions.

At Visible, we’re already seeing how wearable technology can be transformative in empowering people living with complex chronic illnesses such as ME/CFS, to better understand, monitor, and manage their symptoms. We had hoped to see that more clearly reflected in this plan.

The bigger picture: invisible illness still isn’t visible enough

ME/CFS is not an isolated issue. It’s part of a broader crisis of invisible, poorly understood complex chronic illnesses. These conditions face deep, systemic neglect: they are underfunded, poorly understood in clinical settings, and largely excluded from national research strategies. Despite affecting millions, they remain on the periphery of both science and care.

The government’s plan for ME/CFS may mark a shift in rhetoric, but rhetoric without resources won’t be enough to improve people’s lives. At Visible, we’re building the tools and the evidence base that patients need now. If the government is serious about improving outcomes, it must move beyond recognition and invest in the systems that can actually deliver change, alongside those already leading the way.

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Research is a core part of what we do at Visible. We don’t want to just make a better way to manage complex health conditions, but advance our understanding of them and ultimately find treatments.

2 years ago, we launched in-app studies. A way for you to share the data you're already collecting for yourself with researchers around the world.

For those that have enrolled, we’ve connected their anonymized data with researchers at leading institutions, including Mt Sinai Health System, Imperial College London and PLRC.

We’re excited to share that last week we submitted a new paper for peer-review, and that this week, we’re launching a new study. Read on to find out more…

New insights: Visible reveals an effect of ovarian hormones on Long COVID and ME/CFS symptoms

Over 3,000 people contributed their anonymized Visible data to help researchers from Imperial College London explore how the menstrual cycle impacts Long Covid and ME/CFS. This became the largest longitudinal dataset ever studied in this area, and after months of analysis, we’re excited to share that the results are finally in, here's the researchers found:

• Symptoms & crashes fluctuate with the cycle – They tend to worsen during menstruation and improve mid-cycle. This suggests that scheduling more demanding activities during the middle of the cycle—when crashes are less likely—could be beneficial.
• Combined hormonal contraception may play a role – People using the combined pill or patch reported milder symptoms and fewer crashes than those not using contraception. However, this effect wasn’t seen in those using progestin-only contraception (mini-pill, IUS, implant). This points to a potential role for oestrogen in these conditions and could help inform future treatment strategies.

The results have now been submitted for preprint (not yet peer-reviewed), and you can read the full paper here.

This is the most comprehensive study on the impact of the menstrual cycle on symptoms. Frequent patient anecdotes and early surveys gave us early signs that this aspect of these conditions was wildly under-researched and overlooked. We’re excited that we’ve contributed significant findings, not just to validate patient experiences, but to the broader research community to continue to research this aspect of the conditions and potentially help point us towards new treatment strategies.

A huge thank you to everyone who contributed their data to this study. It’s not lost on us the sensitivity of this kind of data, and we’re extremely grateful that you’ve trusted Visible and Imperial to analyze it.

New study: investigating the role of atmospheric conditions on symptoms

Many people with Long COVID, ME/CFS, and related conditions report that their symptoms change with the seasons or even based on where they live. Research on overlapping conditions has found that factors like air quality, temperature, and barometric pressure can have a significant impact on symptoms—but this area remains largely unexplored.

With Visible’s extensive dataset, we have a unique opportunity to investigate these connections. That’s why we’re partnering with Dr. David Putrino and his team at Mt Sinai Health System to study how atmospheric conditions affect symptoms in people with complex chronic illnesses.

By identifying patterns, we hope to deepen our understanding of these conditions and uncover insights that could help with symptom management—whether through pacing strategies or environmental adaptations.

We’re excited to launch this study today. If you’re a Visible app user and want to take part, head to the Research section of the Community tab to share your data anonymously with researchers.

With your help, we can continue our work to advance our understanding of these conditions. Together, we can push for better answers—and, ultimately, better treatments.

Onwards!

Harry

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At Visible, our mission is to make invisible illness visible. To achieve this, we’re committed to widening access to Visible in every way we can. Today we're making a step in this direction by launching our new Refer a friend program: for each friend that you refer to Visible, you’ll both get $20 off.

By sharing Visible with others, you can help reduce the cost of Visible while growing our community, and contributing to our shared mission.

Give $20, Get $20 in Membership Credit

For UK members: Give £15, Get £15 in Membership Credit

1. Share your unique link

If you're a Visible member, your personal referral link is in the Profile section under ‘Refer a friend’. Simply copy and share it with as many friends as you like!

2. Your friends get $20 off

When someone signs up using your link, they’ll get $20 off their Armband 2.0 when purchasing the Visible Membership.

3. You get $20 in membership credit

For every friend who joins Visible through your referral link, you’ll receive $20 off your next membership payment.

The more friends you refer, the more credits you earn - meaning you could lower or even eliminate your next renewal cost. You can easily track your successful referrals in the ‘Refer a friend’ section of your Profile tab.

Why we’re doing this

One of the most common things we hear from our community is that cost can be a barrier to access. While we’re actively working on partnerships with insurers and healthcare providers to make Visible more widely available, we wanted to take immediate steps to help reduce costs for members.

This referral program is one way to do that - giving you the opportunity to bring more people into the Visible community while making membership more affordable for yourself and others.

Ready to get started?

Make sure your app is up to date, and head to the Profile tab to find your unique referral link.

If you have any questions, feel free to message our support team via the Help & Feedback section in your Profile tab.

Onwards!

The Visible Team

In 2024, the number of people using Visible grew tenfold. In many ways, this isn’t surprising. Millions of people with complex illnesses remain deeply underserved. The need for more research, better diagnostics, effective treatments, and improved management strategies is clear.

At Visible, we’re working hard to help bridge this gap. Over the past year, we’ve made significant progress on this mission, but there’s still so much to do.

As we start the new year, I want to take a moment to share what we have planned for Visible in 2025 to keep moving things forward.

All-new Stability Score

Since launching Visible, we’ve built the largest dataset in the world on biometrics, symptoms, and crashes for complex illness. Over the past year, we’ve been diving into this data to develop a cutting-edge AI algorithm that predicts your susceptibility to crashes.

Our early work can be seen in our breakthrough research paper (currently in pre-print), written in collaboration with world-leading experts in complex illness and machine learning, including David Putrino from Mt Sinai and researchers from Yale, Oxford, Polybio and NYU.

We’re excited to bring this cutting edge science directly into the Visible app later this year.

Unlocking the power of Armband 2.0

A month ago we launched Visible Armband 2.0 in collaboration with Polar. This all-new hardware model is a massive step up in all areas. The updated device paves the way for huge improvements for Armband 2.0 members, and we’ll be rolling these out over the coming year, including:

Sleep tracking

Research has shown that sleep plays a huge role in chronic illness. While disrupted sleep is a common symptom of many conditions, it’s also an area where we have some control. We aim to bring you the best insights and guidance across three research-backed pillars impacting illness: sleep depth, sleep quality, and—perhaps less obviously—sleep consistency.

We expect to launch sleep tracking in beta in Q2 2025.

Automated Morning Stability Score

In addition, overnight data from Armband 2.0 enables us to measure HRV readings continuously and throughout the night. We will use this data to automate your morning stability score, so it’s ready for you as soon as you wake up—no manual action required.

You shouldn’t have to think about your illness a second more than you have to. This project is part of our drive to make Visible even more effortless. We plan to launch this feature after sleep tracking becomes available.

Expanding Research Partnerships

In 2024, we launched multiple partnerships with researchers around the world. In 2025, this momentum will continue, with more in-app research studies coming soon. Even more excitingly, we’re beginning to see results from our earliest studies.

Publishing peer-reviewed science takes a long time. We’re excited that three studies that we started 18 months ago are now in the process of being reviewed for publication later this year.

If you enrolled in a study, you’ll be the first to get the results once they’re published.

Smarter and Simpler: Our Focus for 2025

Our main focus for 2025 is to make Visible even more personalized to you, and even more effortless to use. By building more intelligent, automated algorithms and combining them with the latest hardware, we aim to provide you with the best tools possible to manage your health.

This will also enable us to continue collecting data that drives forward our understanding of these conditions. As always, you’ll be able to opt in to share your data with researchers too.

Finally, I want to give a huge thank you to all of our members. It’s only with your support and feedback that we can deliver on our mission. We listen (and respond) to every message you send us, and your feedback will continue to shape Visible. Please keep this going.

Over half of our team live with complex illnesses, and we couldn’t be more motivated to keep building and improving Visible — for all of us.

2025 will only bring more progress.

Onwards!

Harry

At Visible, we're on a mission to make invisible illness visible, and that means building the best possible tools to measure and manage your energy-limiting illness.

Since we launched our wearable membership a year ago, we’ve released more than 100 software updates to the Visible app. But one thing has remained unchanged: the hardware that powers your membership. Today, we’re excited to share the next step in our journey: Visible Armband 2.0.

Here’s what you need to know.

What's new with Armband 2.0

Over the past year we’ve worked closely with Polar, a world leader in wearable technology with over 50 years of experience, to create the next generation of the Visible Armband.

Visible Armband 2.0 brings some important improvements:

• Longer battery life: Up to 5 days of battery life for continuous data capture.
• Simpler charging: No more fiddly cables and cradles with our all-new magnetic charger.
• Same unbeatable accuracy: Designed to be worn on the upper arm, for the same research-grade data you’re used to.

We’re excited for the potential for Armband 2.0 to improve your experience with Visible. And we’re grateful for all of the feedback we’ve received from Armband 2.0 beta users so far.

While there are no additional software features or metrics currently available for Armband 2.0, we’re excited about the possibilities that the new hardware can provide. Rest assured that regardless of which armband you use, we’ll continue developing features and updates for all Visible members.

Upgrading to Armband 2.0

Upgrading to Armband 2.0 is completely optional. If you are currently a Visible member and decide not to upgrade, you can keep using your current armband. All of the features you are used to will continue working, and your membership will continue as normal.

Who can get it and when

If you are a current Visible member who has been with us for more than 100 days, you’ll see the option to upgrade to Armband 2.0 in the app from 2 December 2024. Limited stock means we’re prioritizing availability for our members who have been with us the longest. We will make Armband 2.0 upgrades available to all Visible members in the app by February 2025.

How much does it cost

At Visible, we are different from fitness tracker companies like Apple, Garmin and Fitbit. We don’t make money by selling devices for a profit. Instead, we make hardware devices available to you as cheaply as we possibly can.

Because we don’t make money from selling armbands, it’s your membership fee that powers everything we do. It funds the development of our app and algorithms, and ensures we are constantly improving. It helps pay for our Member Support team who are there to respond to any questions you might have. And it fuels our investment in research into illnesses which have been underfunded and overlooked for far too long.

Charity donation program

While we can't accept trade-ins for your current armband, we’ve partnered with ME and Long Covid charities to create a donation program. If you'd like your old armband to benefit someone else in need, we can help find it a good home. You can find out more information about the program in the Visible app’s Help and Feedback section.

Making the invisible, visible

We know that Armband 2.0 and Visible membership might not be affordable for everyone right now. That's why we are committed to expanding accessibility to our services. We are actively working to build the necessary evidence base to partner with insurance providers and health programs. Achieving this will take time, dedication, and support from our community. We’ve written more about these efforts here.

Visible Armband 2.0 is a step forward in our mission to make invisible illness visible. We can't wait to hear what you think.

Onwards,

Harry

We’re really excited to announce that Visible is launching its own podcast.

Since we started Visible two years ago, we’ve had the privilege of meeting and collaborating with some of the leading researchers in complex chronic illness.

The conversations have been enlightening, motivating, and given us a huge amount of optimism for people living with these conditions, including ourselves.

Now, we want to share these conversations with you directly, and we believe that a podcast is the best way to do it.

Here’s more about the new ‘Make Visible’ podcast:

Breaking down the science

The Visible podcast will be focused on uncovering the latest findings in complex chronic illness, including ME/CFS, Long Covid, EDS, POTS, fibromyalgia, and more.

These conditions all overlap, and we believe that breakthroughs in one condition will likely have a meaningful impact on the rest.

We’ll be digging into the latest research papers, clinical trials and management strategies and bring you interviews with the people behind them. Bringing them to you in an easy to digest way, that can benefit patients, clinicians and researchers alike.

A patient-powered podcast

The Visible podcast will be hosted by Emily Kate Stephens, a journalist who has lived with Long Covid since March 2020.  Having the condition has caused her to pivot from producing breaking news for international broadcasters, to meticulously digging through the research into Long Covid and related conditions.

Emily previously hosted The Long Covid Sessions podcast, and we’re excited to bring her experience, optimism and deep understanding of Long Covid, to complex illnesses more broadly.

Our first episode with the PLRC co-founders

Our first episode features Lisa McCorkell and Hannah Davis from the Patient-led Research Collaborative (PLRC).

Since their inception they have published numerous papers and articles including a complete review of the Long Covid findings in January 2023 in Nature, an article on designing clinical trials in Life Sciences and on the impacts on female reproductive health in Frontiers.  They have worked with the CDC, the NIH, the WHO, and collaborated with Yale, Imperial, UCL and Yale. They’ve also partnered with Visible with an in-app study with Visible on the impact of reinfections.

We discuss their organisation’s achievements - the progress and impact of patient-led advocacy and research in Long Covid and related conditions.

Long Covid Research Moonshot Act of 2024, which aims for $1 billion annual funding for research and treatment for the next 10 years, is a bill that has now been proposed to the U.S. government by Senator Bernie Sanders. “The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education,” Sanders said.

PLRC have been instrumental in the introduction of this legislation within the U.S. and, as they continue to try and change patient outcomes for the better, we discuss their international collaborations and what is still needed: better-informed public policy and medical education.

You can listen to our first episode on any platform here.

What next?

We’ll be publishing new episodes every two weeks, and keeping up with the latest research, but if there’s a topic, paper or researcher that you’re excited by, and think we should discuss or interview. You can get in touch with us directly at podcast@makevisible.com.

We’re always looking for ways to bring more visibility to these conditions, and the science behind them.

Onwards!

Harry

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At Visible, we’re patient-led in everything we do. This means we are always working hard to build new features and incorporate changes based on feedback so we can build the best possible tools for invisible illness.

Here’s a rundown of our latest app updates and why we’ve made them. If you can’t see them in the app, just make sure you’re on the latest version - available here.

Profile tab improvements

In our latest update, we’ve made sweeping changes to the Profile section of the Visible app. When we first launched Visible, we heard from people with light sensitivity that some of the brighter parts of the Visible app were difficult to use. Over the past year, we’ve been working to make the app more consistent and accessible in it’s colour scheme.

We’ve now refreshed the design of the Profile tab to use darker tones and we’ve introduced a bunch more improvements, including reducing the number of buttons, more logical grouping of settings, and adding a new home for Pacing Settings for Visible members.

We hope it’s a marked improvement all around.

Pacing to your schedule

This update is relevant to Visible members who use an armband for Pacing.

Budgeting using PacePoints and the PaceSetter is a core part of Visible’s wearable membership. Until now, the PaceSetter has always moved between two points in time. It started moving when you first connect your armband for the day, and stopped at midnight.

We received lots of valuable feedback from our members that by fixing the “end of the day” to midnight, it was difficult to properly budget energy expenditure for the day. We know that not everybody goes to bed at midnight, and that sleep-wake cycle disturbances are a common part of living with an energy-limiting illness.

That's why now, you can adjust the end-time of your PaceSetter to better reflect your typical bedtime. This option is now available in your Pacing settings in your Profile screen.

Regardless of where you set your PaceSetter end time, any PacePoints collected up until 4AM will now be attributed to the preceding day - this provides more flexibility to our members who have later sleep cycles.

All-new Help Center

We’ve built an all-new Help Center to make it easier to find the answers you need about Visible. Many of you will have chatted with Clare, Ed, Emily, Luke or myself via our Member Support chat. We’re always here to help, but we wanted to make it much easier to find the answers you need without waiting for a response.

For common questions like ‘Is the armband waterproof?’ (it is!) or ‘how are PacePoints calculated?’, we don’t want you to have to wait a few hours so we’ve started building a Help Center to so you can find the information you need more quickly. You can find it by tapping Profile > Member Support (for our wearable members) or Profile > Help & Feedback (for our free app users).

As always, if there is anything that we can help you with that isn’t covered in the Help Center, we’re only a message away.

What we’re working on next

We recently shared a blog post on making Visible more widely available, and this is very much at the front of our minds, but we’re also continuing to improve Visible itself.

In the background, we’re working on improving the Morning Stability score and we’ll be starting to test a new version in the coming months based on millions of data points collected. We’re hoping this will be a significant step forward in accuracy.

We’re also finalizing multiple research papers using the data collected from our first in-app studies. We’ll keep you posted as soon as these are published - we can’t wait to share some our early findings and insights!

Finally, a big thank you to the community for all your support. It’s only your help and feedback that we can continue on our mission to make invisible illness, visible.

Onwards!

Harry

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Over the past few months, we've received lots of messages from people who want to access Visible's wearable device and membership but currently can't due to geographic limitations, affordability, or smartphone compatibility. We hear you.

We’re determined to ensure that every single person with an energy-limiting illness can access what we’re building, and I want to share where we are on the road to achieving this.

Making Visible available in more countries

Many people ask why the Visible membership isn’t available in their country.

Making Visible available internationally is a complex undertaking, especially for a very small company like us. It involves a few key things:

• Logistics and fulfilment: setting up warehousing and fulfilment centres for our wearable devices so that we can stock wearables, and ship quickly and cheaply.
• Legal and financial work: incorporating subsidiary companies, navigating new tax regimes, handling new currencies and deeply understanding unique regulatory environments around health-related products and services.
• Languages and support: international expansion may also involve providing Visible in additional languages. This would involve creating and maintaining translations of our app, help centre, and website. It would also require us to train and hire people who can speak additional language to provide support to our members - something we can’t compromise on.

None of these hurdles are insurmountable individually, but together they make it a significant challenge to launch Visible in many countries quickly.

Nonetheless, making Visible available globally is very much on our roadmap. Although timings aren’t fully defined, we can say that we don’t have the capacity to launch Visible in additional countries in 2024.

The exception to this may be Canada. We already have a North American fulfilment centre and many Canadians have English as a first language. We’ll look to offer Visible here in 2026, but once again we can’t yet commit to a precise timeline for this.

In the meantime, we have made our free app available in a few additional countries (including Germany and Australia) to prepare for future expansion. However, making the free app available in more countries would come with significant data and support costs, and as a small company, we’re not able to offset these costs until we can also offering our full membership in these geographies.

Making Visible available via insurers, and the NHS

We know that many people with energy-limiting illness are not in a financial position to afford a Visible membership. Our long-term goal is to make Visible available for reimbursement from insurers or provided free of charge by healthcare providers.

To achieve this, we need to build a significant evidence base to demonstrate Visible’s effectiveness in improving patients’ health. Healthcare payers understandably only subsidise tools which are evidenced by strong scientific and health economic data.

Fortunately, with a community of over 80,000 Visible users, we’re increasingly able to show the impact that Visible is having. We recently updated our website to include some early outcomes from 1,300 of our members, showing that 86% of people report that they feel more in control of their illness and that 91% of members are better able to manage their energy.

This is very encouraging, and we’re working with leading researchers including Dr. David Putrino and Prof. David Strain to publish the full outcomes from this survey in a peer-reviewed journal. This is the first step towards building a solid evidence base to engage with insurers and health plans. The second phase will be pursuing a Randomized Control Trial (RCT) - the gold standard of evidence.

We understand this can’t happen quickly enough, and we hope that our free Visible app will still provide some support during this time for those unable to afford the full membership.

Supporting more smartphone devices

While we support Android devices generally, we’re currently unable to support certain Motorola and Oppo branded smartphones, specifically due to their shared Snapdragon processor. This processor can’t currently or reliably sync real time data from our Polar armband.

We’ve been working hard over the past few months with Polar to get to the bottom of this issue, we will keep pushing for this to be fixed as soon as possible.

How are we prioritizing availability?

Visible is run by a small team, over half of who live with energy-limiting conditions. There is only so fast that we can work, and frustratingly, it isn’t possible to make Visible available to everyone today. This means that we have to prioritize where we focus our energy, which is incredibly tough to do (as many of our our members know).

With this in mind, we believe that the right approach is to take things in the following order:

• Exploring Canadian expansion via our North American logistics.
• FSA/HSA Eligibility in the US, enabling tax-free membership purchases.
• Insurance and NHS Partnerships in the US and UK.
• Language and Regional Expansions to bring Visible to a global audience.

This will take time, but we are working hard on it. We’re alway evaluating our priorities, taking into account our capabilities and community needs, so I’ll keep you updated on our progress. I’d welcome any feedback on our approach - you can reach out to us anytime at info@makevisible.com. We’ll always respond.

Onwards,

Harry

Our mission at Visible is to help you manage your health and pace yourself with data. This month, we’re excited to launch a new feature to help achieve this goal - Coherent Breathing.

Note: Coherent breathing requires wearable data and is available as part of the Visible membership.

Breathing as part of a pacing strategy

Many people with energy-limiting conditions find that their symptoms get worse after exertion. ‘Pacing’ is a strategy to manage this by balancing rest and activity.

Achieving proper rest is an important part of pacing, and breathing exercises can help you enter a restful state. By spending more time in deep rest, you can give your body a better chance to rebalance and recover from exertion.

Now you can use your Visible armband to guide you through breathing exercises in real-time, right inside the Visible app.

Coherent breathing involves controlled and intentional breathing

Experts promote many different breathing techniques for chronic conditions and it can be easy to get overwhelmed by the options available. Ultimately however, they are largely variations on coherent breathing; which means intentional and controlled breathing at a specific rate to you.

What is heart rate variability (HRV), and why does it matter?

The goal of coherent breathing is to find a breathing pattern that allows you to maximise your HRV. This is a measurement of the variation in time between your heartbeats and reflects the activity of your body’s stress response and recovery systems. By measuring HRV, you can determine if your body is in a restful state (‘rest and digest’) or under stress (’flight or fight’).

Visible’s coherent breathing feature helps guide you towards a restful state which can be seen in increased HRV. By displaying your raw heart rate data in real-time and with high accuracy, you can see precisely how your breathing impacts your HRV, in order to increase it. This is often referred to as ‘HRV Biofeedback’.

Finding your optimal breathing rate

Everyone has a unique breathing rate that maximizes their HRV. This is also known as your resonant frequency.

Visible can help you to find your resonant frequency by completing a resonant frequency test. This is a 6 minute session which changes the pace of your breathing over the course of the session, and then calculates the breathing rate at which your heart rate variability was highest.

Evidence-based rest

Research shows 10 minutes daily of coherent breathing can help reduce symptoms.

Our scientific advisor, David Putrino, recently showed that breathing at around 5.5 breaths per minute (the average resonant frequency for many) for 10 minutes each day improved symptoms and wellbeing in Long Covid after 4 weeks.

This is backed up by breathing studies published in the last year with similar findings out of Leeds University in the UK and University Hospitals of Trieste in northern Italy.

Wider research studies across various overlapping chronic illnesses have similarly shown how guided breathing, as part of a healthy lifestyle, may help living well with certain chronic diseases or conditions.

What next?

We’re focused on building the best possible tools for invisible illness.

This is our first version of coherent breathing in the Visible app. We have already received some incredible feedback from our members. As always, we will continue to make improvements based on this feedback including adding sound, more accurate HRV impact analysis, and improved breathing guidance.

We'd still love your thoughts on how to improve it further, so please reach out to Member Support with any feedback you have - we'll always respond.

Onwards!

Harry

Today, we’re launching a new in-app research study into reinfections.

It’s long been reported by people with Long Covid and myalgic encephalomyelitis (ME/CFS) that new acute infections, including Covid infections, can have a significant impact on long-term symptoms.

We’ve partnered with the incredible Patient-Led Research Collaborative (PLRC) to help understand this phenomenon.

Partnering with Patient-Led Research Collaborative

PLRC is a non-profit, patient-led organisation that has published some of the most cited work in Long Covid, including ‘Characterizing long COVID in an international cohort: 7 months of symptoms and their impact’ in 2021 and ‘Long COVID: major findings, mechanisms and recommendations’  in 2023.

The research they have published and funded has been some of the most impactful to date.

Last year they began investigating reinfections, and plan to publish their findings later this year.

Gaining a deeper insight with Visible’s community dataset

With more than 60,000 people with energy-limiting illness already tracking symptoms and biometrics with Visible every day, we have an unprecedented opportunity to provide an even larger and more comprehensive dataset to dive even deeper into the data to answer crucial questions like:

• How frequent are reinfections for those living with long term symptoms?
• What is the impact of these reinfections on symptoms and recovery?
• Does the impact of Covid infections differ from the impact of other infections on quality of life and health metrics for people with ME or Long Covid?
• How do medications you're on during reinfection influence health outcomes?

We’re excited to partner with PLRC on this research to bring more visibility to these conditions.

Tracking infections in the Evening Check-in

If you’d like to participate in this research, you can opt-in to share your anonymized data with PLRC from within the Visible app. Simply go to the Research section in the Community tab to enrol.

Once enrolled, your evening check-in will then include a new tracker for ‘infection’ allowing you to record any days that you experience an infection and record the infection type, if you know it.

Enroll into other research studies before they close

Visible now has a total of 4 research studies live. If you’d like to take part in more research there are also studies into the menstrual cycle and biometrics, with fantastic Long Covid and ME researchers, including Viki Male and Christian Morgenstern from Imperial College London and David Putrino from Mt Sinai.

These three researchers have now started analyzing the anonmymized data shared by thousands of people over the past few weeks. Now is a great time to enrol and help provide them with an even more powerful dataset.

Together we can move the science forward, and help make invisible illnesses, visible.

Onwards,

Harry

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Long Covid and ME/CFS can significantly impact your ability to carry out day‑to‑day activities. This is called a reduction in functional capacity, and it is one of the most debilitating aspects of living with an energy-limiting condition. However, until now, this impact has been difficult to measure, and understand.

We're now combining a breakthrough research questionnaire with an all-new Monthly Check-in to make tracking this much easier.

Tracking symptoms or activity alone is not enough

Functional capacity is defined as an individual's ability to perform tasks and activities that are necessary or desirable in their lives.

However, tracking symptoms alone does not capture this properly. This is because, for many people, as their condition improves, they increase their activity to tolerate a similar level of symptom severity.

This means that when evaluating treatments, beneficial outcomes can easily be missed if only symptoms are being tracked.

Similarly, tracking only your activity levels is not enough either. Many people are able to increase their activity, but this doesn't take into account the cost of doing so.

A different tool is needed to solve this.

FUNCAP27 is a new questionnaire that measures functional capacity

Until now, there hasn't been a good, or validated, way of measuring functional capacity in ME/CFS or Long Covid. A few months ago a research paper was published by four researchers who aimed to track functional capacity in energy-limiting illness. They spent 2 years working with over 1000 patients and going through 5 iterations to create a new assessment tool - called FUNCAP27.

FUNCAP27 is a patient-informed and validated questionnaire that uses 27 questions to measure Functional Capacity.

The questionnaire covers 27 activities across 8 areas and for each activity asks:

• What are the consequences for you if you perform this activity?
• To what extent does this affect how much else you can do?

Completing the questionnaire provides a total score out of 6, where a score of 5.8-6 is typical of a healthy individual and a lower score represents reduced Functional Capacity.

We’re including FUNCAP27 in the new Monthly Check-in.

Since Visible first launched, the Morning Check-in and Evening Check-in have been the primary way to track your health over the long-term. Now we’re adding a third.

The all-new Monthly Check-in allows you to easily track your functional capacity score each month. It helps you to understand where your illness has the biggest impact on your life, and keep track of changes happening over time.

Making the invisible, visible

The monthly check-in is a crucial tool to shine a light on functional capacity. It represents a huge step forward in understanding energy-limiting illness, and support research into new treatments and management strategies. And we’re excited to bring it to more than 50,000 people using the Visible app.

A massive thank you to researchers Kristian Sommerfelt, Trude Schei, Katharine Seton and Simon Carding for their hard work in creating FUNCAP27, and to the many thousands of patients that are part of the The Norwegian ME Association’s community who provided their input and support.

As one of the authors Trude Schei shared with us: 'We really should have had a list of authors several thousand long for this paper. We have received so much valuable input and feedback from so many. As they are all anonymous, all I can do is to say a huge thank you to everyone who has used their limited energy on testing and commenting. The degree of user involvement in this project is unique – and invaluable.’

We hope by combing the results of this important work with the Visible app, we’ll help make functional capacity a gold-standard metric. Not just for patients, but for clinicians and researchers around the world too.

Onwards!

Harry

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It’s been just over a year since we launched, and set out on a mission to make invisible illness visible.

From the beginning, we’ve been keen to be transparent about what we’re building at Visible and why. Too often the reasons for why service providers and researchers make certain decisions are unclear to the people they directly affect. This can be extremely frustrating, but it is also easily avoidable.

Over the past year we’ve written a number of blog posts about Visible’s progress including new features and research studies, and we want to continue this.

As it's the beginning of the year, now is a good time to look ahead and share our plans for Visible in 2024.

Improving the App

Over 40,000 people are using the Visible app to track their health and contribute to research, and we have exciting plans to continue to develop it so we can improve the lives of as many people as possible.

Just last week we updated the accuracy of HRV readings (reducing error by roughly 50%) and we have more improvements planned; including a Monthly Health Report, a monthly check-in, and a brand new feature that will help you better understand what factors, like medication or lifestyle changes, are impacting your health.

Looking back at everything we’ve done over the past year, one thing is clear: it’s only with your feedback that we’ve been able to build the best tool for the people we want to help. We’d encourage you to keep it coming. You can reach us via the Help & Feedback button inside the Visible app, and we’ll always respond.

Focusing on Wearable Data

As you may know, certain Visible users in the US and UK currently have access to Visible Plus, our wearable membership. Visible Plus is currently a paid program, and is how we support the work we do at Visible.

The potential for using wearable data to measure and manage energy-limiting conditions is huge. Making the most of wearable data has been a big part of our mission since we started Visible, and in 2024 we’ll start to focus on Visible Plus even more.

Wearable data can not only help manage these conditions via pacing but also measure these conditions through biometrics like HRV. Using biometrics has the potential to unlock a whole new paradigm for both patients and researchers.

The Visible team is super excited about Visible Plus, and we can’t wait to continue our work on this. If you're interested in getting involved, you can see if it’s a good fit for you here. We’ll start to share more and more about Visible Plus over the coming months, starting with a much-needed website refresh with all the basic information you need.

Expanding Research Partnerships

While the goal is to build the best tools possible to manage these conditions for individuals, the secondary outcome of this is that we’re collecting an incredible dataset to help move the science forward.

In 2024 we’ll continue to expand our research efforts, and we have some exciting new partnerships to announce in the coming months. Watch this space!

As always, your data belongs to you. This means it’s only ever shared with researchers if you enroll into a study in the Visible app, and agree to share your data entirely anonymously.

To bolster our research efforts, we’re also investigating a short ‘monthly check-in’ that would include validated health questionnaires (often used in clinical trials) to better align Visible data with research.

A Year of Hope and Progress

Progress can’t happen fast enough for complex chronic illness, and I’m fortunate as being part of the Visible team that I get to meet with researchers around the world frequently, and I feel incredibly optimistic that more answers will be found for these conditions.

The rate at which research papers are being published for Long Covid and ME/CFS alone is increasing at an exponential rate, and we hope to make significant contributions to this in 2024.

A big thank you for being being a part of the journey with us, here’s to another year of making invisible illness, visible.

Onwards!

Harry

Today, Visible is launching a research collaboration with neuroscientist David Putrino, Director of Rehabilitation Innovation for Mount Sinai Health System in New York.

David has emerged out of the pandemic as one of the leading patient advocates and researchers on Long Covid and ME. He and his team have been relentless in pursuing answers for people with complex chronic illness.‍

Launching a new in-app research study

From today, you can opt-in to share your anonymized data directly with David and his data science team via just a few taps of a button. There’s no need to attend any research in person, simply enroll via the app and continue tracking your illness as normal.

By opting in, your data can be used to generate population-level insights into Long Covid and ME.

The study is hosted in our community section of the Visible app and follows similar studies we launched in July with Dr Viki Male and Christian Morgenstern, researchers at Imperial College London.

Visible has built a vast and growing dataset

With over 58 million data points and more than 40,000 people using the Visible platform, Visible has become the largest dataset in the world on biometrics, symptoms and interventions for Long Covid and ME/CFS.

With this, we have an incredible opportunity to find patterns, insights and new treatment areas in these conditions.

The relationship between biometrics and symptoms

The research team are particularly interested in the relationship between biometrics, like Heart Rate Variability, and symptoms.

Many people with complex chronic illness have spotted patterns between their biometrics and their illness, and early research has hinted at this too.

One small study showed fatigue inversely correlated with HRV in people ME/CFS and another study found HRV to be lower in people with Long Covid.

David’s research aims to use a significantly larger dataset to provide new, and statistically significant findings that could change how we support, treat and manage these conditions.

Be part of the research and contribute your data anonymously

If you have a complex chronic illness like ME or Long Covid, you can get involved today.

Download the app, enroll in the study and start making your illness visible.

Bringing Visible together with David and his team is a big step forward in our mission to increase our understanding of these complex chronic illnesses.

We hope you’ll join us in moving the research forwards.

Onwards!

Harry

Note: We never share your data without your permission, which is why you need to enroll in studies to be able to share your data with researchers. Any shared data is always anonymized, your data can never be linked back to you. If you have any questions or concerns, reach out to the team in the Help and Feedback section, we'll always respond!

We’re on a mission to make invisible illness visible. Making your health data easier to share with healthcare providers and researchers is a crucial part of that.

As a patient-led team, we know how important it is to have an easy and effective way to communicate your health journey.

That's why today we’re launching brand new, highly-requested features to make it even easier for you to view, analyse and share your Visible data.  🎉

Download your Health Summary

You can now download a PDF report that summarizes your last 12 months of Visible data into one easy to use document. This report is designed to quickly inform clinicians about your illness and offer you an overview of your health in the last year.

You’ll need at least 30 days of data to be able to generate this report.

Download your Monthly Trend Report

Soon you’ll be able to download a PDF report with a monthly analysis of your illness. The report will compare your last 30 days with your previous 3 months. This way you can get a better view of your recent trends, and have a more detailed view for those with more regular visits with clinicians.

Coming soon. You’ll need at least 90 days of data to be able to generate this report.

Export your data to a spreadsheet

Access all of your raw Visible data, for easier sharing. Using the ‘Export data’ button in the Profile tab, you can download a CSV of all the data you’ve ever tracked in Visible.

For those people taking part in research studies outside of the Visible app, this will allow you to share your data directly with researchers

We’d love your feedback

If you have any feedback on these new features, we'd love to hear it. Please reach out to us via the in-app ‘Help and Feedback’ section or email us at info@makevisible.com. We’ll always respond.

What next?

We still have our monthly analysis PDF report to finalize, we hope to have this available in the coming weeks. In the background, we’re continuing to work on Visible Plus and bringing more research studies to you. We’ll have more exciting announcements coming soon!

A big thanks to you for continuing to support Visible.

Onwards,

Harry

We’ve just launched brand new research studies in the Visible app.

We started Visible around a year ago with the ambition to create visibility for Long Covid and ME/CFS. We knew that to achieve this, our approach had to be two-fold:

1. First, empower people to measure and manage their own conditions
2. Second, increase our collective understanding of these conditions.

Over the past 6 months, we’ve been building tools to people better manage their health. The result of this is that we’ve already collected one of the most comprehensive datasets on Long Covid and ME/CFS including symptoms, biometrics and medication.

This data is immensely powerful; not just for individuals, but for researchers too. By bringing together tens of thousands of people’s data, we can now help to uncover insights that could lead to thing like new treatments and changes in government policy.

Partnering with Imperial College London

Collaborating with world-leading research institutions is the next step toward making conditions like ours visible.

Today we’re announcing our first partnership with one of the world’s leading research institutions, Imperial College London. You can now opt-in to share your Visible data directly into our first studies in to female reproductive health and economic of the conditions.

Investigating the menstrual cycle’s link to symptoms

Our first study is with Dr Viki Male an immunologist in the Department of Metabolism, Digestion and Reproduction at Imperial College London

It’s been evident to patients for decades that the menstrual cycle has a major impact on symptoms. It needs more research and visibility. Understanding the relationship between the cycle and symptoms could lead to deeper research into new treatment areas.

Our first study titled the ‘Effect of the menstrual cycle on Long Covid and ME symptoms' will researching this.

Investigating the economic impact of Long Covid

Our second study is with Christian Morgenstern, an Infectious Disease & Health Economics Researcher in the School of Public Health at Imperial College London.

With disability claims rising in the US, and long-term sickness at an all-time high in the UK, we need better epidemiological models of Long Covid. Understanding these conditions better is key to changing health policies around the world. Our second study titled ‘The epidemiological disease properties and economic impact of Long Covid’ will be researching this.

More studies coming soon!

This is just the beginning. We have more studies coming soon, and we’re inviting academic researchers and institutions around the world to host studies with us. If you’re a researcher and interested in launching a study, reach out to the team at info@makevisible.com

Join the movement

Help support our mission…join the research, share Visible with your friends, and help us make invisible illness, visible.

Onwards!

Harry

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This week, we're updating the Morning Stability algorithm.

What’s new?

Better interpretation of high Heart Rate Variability (HRV)

One common question about the Morning Stability score is “Why have I received a low score when my HRV is higher than normal?”

While it generally true that higher HRV is typically a good sign because it indicates your body is able to respond to external stressors effectively, stability in your HRV is important too. Large swings in HRV could indicate that your body is out of balance.

In the Morning Stability algorithm, we initially took a conservative approach and assumed that upward swings of HRV were a sign of additional stress. With the benefit of more data, though, we’ve been able to better identify when increasing HRV is in fact a positive signal.

In our latest update, we’ve introduced a wider “normal range” above your baseline HRV. This means that increases in HRV are more often treated as a positive sign, leading to more accurate scores.

We’ve taken the same approach with Resting Heart Rate. Previously a reduction in Resting Heart Rate was interpreted by the algorithm as an indicator of additional stress and instability. The algorithm will now interpret gradual reductions as a sign of improved health.

Improved language

We’ve made some tweaks to the wording we use in the Morning Stability results, we hope this will make the score easier to understand.

What’s next?

All-new in-app studies

We’re still waiting on final approval from various academic partners’ review boards to allow you to opt-in to share your data with researchers around the world. This will come with a big update to the community tab.

Anything else?

We’ve also invited our first few users to join our Early Access Program for Visible Plus, which enables all-day pacing with a wearable device. If you’re interested in getting early access, make sure you are signed up to the waitlist, which you can access from our website.

Your support

Finally, thank you so much for all the messages and feedback we continue to receive. We listen to every bit of feedback, so please keep your thoughts coming. We’ll always respond.

Best

Harry

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In recent months, more people have joined Visible than we could have expected (25,000 and counting!). This is a great step forward in our mission to make invisible illness visible, but it does mean that our app has been under some strain…

When we first started building Visible, we prioritised building new features over fixing bugs and improving performance. However, this has started to impact usability in recent weeks. To address this, we have spent some time on a major behind-the-scenes update which that will significantly improve your experience with Visible.

What’s new this week?

Lightning fast performance

Over the past few weeks as more users joined Visible, we noticed that the app was becoming a little sluggish. This is something we were really keen to fix, and I’m pleased to say we’ve made some big progress!

Visible now holds your data first and foremost on your mobile device, with backups being sent to our database automatically throughout the day. This makes nearly all interactions with the app faster than ever before, as you don’t need to rely on a continuous internet connection to use Visible.

Improved reliability

The other huge benefit to our mobile-first approach, alongside increased speed, is that the app is now much more stable. As the app no longer has to rely on retrieving data from our database, you should see many fewer network errors or glitches as you use Visible.

What’s next?

While app performance and stability have been our top focus for the past few weeks, we’re returning to our priorities set out in our last blog post, including:

Improved Morning Stability algorithm

In the last blog post, I wrote about how we interpret very high HRV values and very low resting heart rate values. In the next app update, we’ll be introducing a new version of the Morning Stability algorithm with an improved method for interpreting these values.

All-new in-app studies

We’re still waiting on final approval from various academic partners’ review boards to allow you to opt-in to share your data with researchers around the world. This will come with a big update to the community tab.

Anything else?

We’ve also invited our first few users to join our Early Access Program for Visible Plus, which enables all-day pacing with a wearable device. If you’re interested in getting early access, make sure you are signed up to the waitlist, which you can access from our website.

Your support

Finally, thank you so much for all the messages and feedback we continue to receive. We listen to every bit of feedback, so please keep your thoughts coming. We’ll always respond.

Onwards,

Harry

Morning Stability is a score that calculates the stability of your body's signals. Many people find it helpful for understanding how their body is doing and guiding their pacing for the day.

We launched the first version of this score 2 months ago and have since collected an additional 12 million data points from people with ME/CFS and Long Covid. Using this data, we've created a new and improved version of the Morning Stability score.

What updates have we made?

Extending the baseline

We now calculate your Morning Stability using a significantly extended baseline. Previously, the algorithm only looked at the most recent 14 days of data. We now look at up to 90 days of historical data when calculating your "normal range." This helps us understand what "stable" looks like for you, especially if you're experiencing an extended crash that may last for a couple of weeks.

Introducing personalized normal ranges

In the new version of the score, we make small adjustments to your normal range by taking into account how much your biometrics typically fluctuate. This means that some people will have narrower or wider normal ranges than others. By adding this layer of personalization, we can more accurately calculate your Morning Stability.

Improved check-in journey

As part of this work, we've updated the design of the morning check-in screens. The new morning check-in removes unnecessary screens, provides clearer instructions on how to take a high-quality reading, better educates new users of Visible, and reduces screen brightness.

We hope that these small changes add up to something much bigger and make it easier for you to take a measurement every morning. As always though, we'd love to hear your feedback.

What's next?

Collecting more data

With tens of thousands of people with ME/CFS and Long Covid checking in each day, the Visible dataset is already one of the most comprehensive for understanding these conditions. Learning from this data unlocks improvements in our algorithms, so the more data we collect, the more accurate our algorithms can be.

Focusing on high HRV values

In general, a higher and more stable Heart Rate Variability (HRV) is a positive indicator of better health. One limitation of the current version of the Morning Stability score is that high HRV values outside your normal range are marked as an indicator of instability and can result in a lower Morning Stability score. We're looking into ways to better determine when high HRV is a warning sign and when it's a positive thing, so we can include this in the score too.

What else are we working on?

Visible Plus

We're continuing to develop our wearable subscription, Visible Plus. We've been emailing those on the waitlist to join our Early Access program. If you're interested in joining the program and haven't already signed up for the waitlist, you can do so from the Profile tab of the Visible app.

Research partnerships

We're working with academic institutions, including Imperial College London, to introduce academic studies to the Visible app. This will allow you to opt-in to share your data with researchers to move the science on Long Covid and ME/CFS forward. More info coming soon!

Thanks for your support

Thank you so much for helping test and build Visible. As you can see from this blog post, you're helping to make Visible better every month.

Please continue to message us via the "Help and Feedback" section, especially on how you're getting on with the new version of the Morning Stability Score. We read every message, and we'll always respond!

Onwards,

Harry

This week we welcomed our 20,000th member to the Visible community. This is a huge milestone, so thank you if you’ve been sharing Visible and our mission on social media or with friends and family.

We’re continuing to collect more and more data on Long Covid and ME/CFS, and we have lots of updates in the works to help us improve our algorithms and build out our research capabilities and partnerships.

While this is happening in the background, we want to make sure the app is continuously improving, so this week we have a new app update out with a few small, but impactful changes.

What’s new this week?

Darker check-in screens

Were you being blinded by the morning check-in every time you woke up? Us too (sorry!).

The morning and evening check-ins are now the same dark colour as the rest of the app. This will make it easier to navigate between screens, particularly if you have light sensitivity.

We aim to move the rest of the screens to this darker color over the coming months too. Thank you to everyone who messaged us about this!

Better morning check-in support for Android devices

In the last two app updates, we’ve fixed a few issues with taking morning readings that were affecting specific Android devices. We’re continuing to work on improving this, if you’re still having issues, let us know via the ‘Help and Feedback’ section.

What next for the Morning Check-in?

Personalised “normal ranges” for the Morning Stability score

In the last blog post I wrote about personalised “normal ranges”, we’re now testing an updated version of theMorning Stability score that uses these personalised ranges based on your Coefficient of Variation.

We’re seeing a sizeable improvement in the personalisation of the score and we’re excited to roll out this improvement in the coming weeks.

Longer baseline for the Morning Stability score

The Visible app has been in Open Beta for 3 months now. As our dataset grows, we’re able to look back further in time to see patterns in these conditions. We’re now able to extend the Morning Stability baseline from weeks to months, and we’ll be updating the algorithm soon to be able to do this.

Anything else?

We’re still finalising multiple research partnerships. Soon you'll be able to opt-in to share your data directly and anonymously with academics around the world.

We’ve also invited our first few members to join our Early Access Program for Visible Plus, our wearable subscription. If you’re interested in getting early access, make sure you are signed up to the waitlist, which you can access from inside the Visible app.

Your support

Finally, thank you so much for all the support we continue to receive. We listen to every bit of feedback, so please keep your messages coming. We’ll always respond.

Onwards,

Harry

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This week we’ve released some small (but mighty!) improvements to improve the morning check-in.

What’s new this week?

You can now delete or retake your heart rate reading

Previously, if you were interrupted during a heart rate reading or took it at the wrong time, you were unable to retake your reading. This meant you were stuck with results which could skew your Morning Stability baseline.

With today’s update, you can now delete your heart rate readings, and retake today’s one if you need to.

Improved signal quality of heart rate readings

Until now, around 1 in 5 morning check-ins have resulted in a low quality reading. This has made the morning check-in a frustrating experience for many of you.

With the newest update we've released some improvements to the algorithm which interprets your heart beats. Now fewer than 1 in 20 readings will need to be retaken because they're low-quality, a significant improvement.

What next for the morning check-in?

Personalised normal ranges for the Morning Stability score

Each morning, the Morning Stability score lets you know whether your Heart Rate Variability (HRV) and Resting Heart Rate measurements are within your “normal range”.

Currently this is calculated by taking your 14-day average, and calculating a window of typical variation either side of that average. However, the range in which your body’s signals typically fluctuate is different for each person.

That’s why soon we’ll be introducing personalised normal ranges based on your Coefficient of Variation (or CoV). This will improve the accuracy and sensitivity of the morning stability score significantly.

Improved accessibility and device support

We’re working hard to make the morning check-in more accessible, including larger fonts, better wording, fewer screens and darker colours. We’ll be overhauling the first half of the morning check-in soon. Thank you for all the feedback on this!

Anything else?

We’re currently finalising multiple research partnerships. You’ll soon be able to opt-in to share your data directly and anonymously with academics around the world.

We’re also working hard on our wearable subscription, Visible Plus. If you’re interested in getting early access, make sure you're signed up to the waitlist, which you can access from inside the Visible app.

Your support

Finally, thank you so much for all the messages we’ve received, in particular about the Morning Stability score. We listen to every bit of feedback, so please keep your thoughts coming. We will always respond.

Onwards,

Harry

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At Visible, we want to help you use data to better understand and manage your illness. Today, we're introducing a major update to the Visible beta app that will get us one step closer to achieving this goal.

We’ll be rolling this update out slowly over the next few days, so hold tight if you don’t see it in your app yet!

So, what have we been working on?

When you check into the Visible app each morning you’ll see a number that we’ve been calling the “Morning Pace" score. This score is intended to help you make sense of your body’s signals, and use data to help you pace your day.

When we first released the score, we knew that it wasn’t perfect. But we also knew that it was important to release it early, so we could collect enough data and feedback to improve it.

We’ve now collected over 5.5 million data points from more than 15,000 people living with Long Covid and ME/CFS, alongside hundreds of unique pieces of feedback from our beta testers. We’ve spent the last month analyzing all of this, and today we’re launching a new, updated score. We’re calling it Morning Stability.

Why are we updating the Morning Pace score?

Currently, the score only looks at one data point - Heart Rate Variability (HRV). It works by counting small changes in your HRV as a good sign, while treating large swings up or down in your HRV as a bad sign.

Having looked at the data, it generally holds true that this pattern correlates with symptoms. But it’s also clear that HRV alone doesn’t hold all of the answers. This means the score often gives results that don’t accurately represent how we feel, especially if it produces a high score on crash days.

What’s new in the Morning Stability score?

1. Focusing on stability

It’s clear from the data we’ve looked at that stability is an important predictor of symptom severity. Statistically speaking, the further your body’s signals are from their normal range, the more likely it is that symptoms will worsen on any given day. This means that stability can be a helpful tool when deciding how to pace.

Our new score, now out of 5, makes it easier to understand your stability each morning and make decisions based on it.

2. Including additional factors

As we mentioned above, the Morning Pace score only took into account HRV. From our analysis, it is also evident that changes in other factors are important when it comes to stability too.

For example, recent trends in your self-reported symptoms and your sleep quality also have significant predictive power. That’s why our new score now takes into account four key factors:

• Changes in Heart Rate Variability
• Changes in Resting Heart Rate
• Your sleep score
• Your symptom trends (from the evening check-in)

3. Increasing the “baseline” length

The Morning Pace score only took into account 7 days’ worth of data when calculating your baseline. We now know that this isn’t long enough, in part because it is significantly impacted by multi-day crashes.

For that reason, we’re now using your previous 14 days of data to calculate your normal ranges for biometric factors. This is a rolling time window, which means your baseline will stay up to date as you keep using Visible.

Note: We are working on a future version of the algorithm which will exclude any days marked as ‘Crash’ altogether from your normal range.

4. Showing our working

One of the issues with the old Morning Pace score was that it was a “black box”. This means it was difficult to understand precisely why it returned a certain score (for example, why did you get a score of 7 on one day and not 8?).

In the new version, we’re including every factor that impacts your stability score in a short “score summary”. This way you can easily tell how your score is calculated, and even decide which contributing factors matter most to you.

What else do I need to know?

We’re continuing to improve the new score

The Morning Stability score is in “beta”, which means (like the rest of the app!) it is still in its testing phase. We're still working on it, collecting data and doing more research to make it better.

We’ll continue adding new factors to the algorithm, as well as tailoring the score to different groups based on things like illness severity, symptom clusters and diagnosis.

In a future update we'll also be adding the ability to retake or delete your heart rate readings.

We’d love your feedback

Your feedback on what we build is invaluable, and we listen to everything we receive. Without it we wouldn’t have been able to build this new score at all, so please keep your insights coming!

You can get in touch with us either from the in-app ‘Help and Feedback’ section or email us directly at info@makevisible.com

Best,

Harry

This week we have some small updates and improvements to the beta app, and next week we’ll be releasing our major update to the Morning Pace Score.

I’ve previously written about how important it is that we’re open about what we’re building at Visible, so here’s an insight into how we’re responding to some of the feedback we’ve received, what we’ve been up to over the holiday period, and what we’re working on next.

What’s in the new beta app version?

• You can now pause, edit and delete custom symptoms and medication in Your Trackers
• You can view your data in a 3-month view in your Trends tab
• You’ll now see the correct dates in Trends for dates in 2023
• We've also resolved some connectivity issues and improved the heart rate reading reliability for some Android devices. See below for more upcoming changes.

Make sure you've updated your app (version 23.1.3) to get the latest updates.

What’s coming in February?

A new version of the Morning Pace score

Over the last 6 weeks we have collected over 5 million data points on people’s symptoms and biometrics. We’ve spent the previous 4 weeks analyzing it, and are really excited to be releasing an updated algorithm and all-new design next week.

We’ll be sharing more information about what our new score means and how to use it very soon.

As part of this update, we’re also allowing you to delete or retake previous readings which has been frequently requested over the past month.

Improved camera heart rate reading accuracy and reliability

One of our biggest issues since the launch of our beta app has been getting reliable heart rate readings via the smartphone camera. Whether it’s readings not starting, readings stopping halfway through, or readings coming back low quality, for some it’s been a frustrating experience.

We’ll have a significant improvement in the accuracy and reliability of these readings coming in an update in a few weeks’ time.

Anything else?

We’re continuing to work on Visible Plus

Our Founding 100 group will receive a major app update in two weeks, before we make it available to those on our waitlist over the coming months.

We’re adding new research studies

We’re also working on multiple research partnerships that will mean that you can effortlessly (and anonymously) share your Visible data directly with academic institutions and non-profits from around the world via the Community tab. We’ll be announcing these partnerships over the coming months.

With data at the core of our mission to make our conditions visible, we’re excited to be collecting more of it via Visible Plus, and getting it into the hands of researchers via our research partnerships.

Onwards,

Harry

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At Visible, we talk a lot about the importance of rest and pacing. That’s why, as a team, we’ll be taking some time away from work this holiday period, to focus on rest and recovery. But before we take a break we’re making some more changes to the beta app.

In this week’s app update

Basic medication tracking

Many people have requested the ability to track medication in Visible, so we're now adding this feature in the latest update.

We've designed this to be straightforward. For instance, we don't have options to record dosages, frequency, or set medication reminders. If you choose to track your medication in Visible, we'll simply ask in the evening check-in whether you took that particular medication today (yes or no).

We believe that keeping things simple will help you to see trends in your data and the impact of different factors on your health and energy levels over weeks and months.

For those of you who opt-in, this data will also be essential for research. By looking at population-level data, we may be able to identify which medications or interventions can reliably cause positive (or negative) trends in health across large groups of people with Long Covid and ME/CFS.

You can track a new medication by updating your app to the latest version and going to Profile > Your trackers > Other factors

Other small improvements

A massive thank you to everyone who has continued to send us feedback over the last week. Whether it’s adding autocorrect to notes, fixing connection issues or viewing notes in the Trends tab, we’ve made a bunch of improvements we hope will make Visible easier to use.

What’s coming in January

Improved camera heart rate reading

For some people, especially those with newer Android phones, the morning check-in has been unreliable. For example, the reading may not start at all or return a poor-quality result. In other cases, the flash gets too warm during the reading.

We’ve been working hard on improving things and will have an update ready soon. We massively appreciate your patience if you’re one of the people affected.

An updated Morning Pace score

The Morning Pace score is still in its early stages and we've received lots of feedback about it.

In January, we're making a big change to how it's calculated. To do this, we've studied more than 1 million pieces of data and listened to helpful input from many of you, alongside members of our own team who live with Long Covid or ME/CFS.

We'll give more info in our blog post next week.

Visible Plus (beta)

We’ve also been working hard on developing Visible Plus, which we’re about to start testing with our Founding100 group.

If you’re signed up for the Visible Plus waitlist, we’ll be sending out an email soon, giving you the opportunity to access the beta version of Visible Plus before we make it publicly available.

As always, please do send across any feedback you have for Visible. We’ll always respond!

Wishing everyone a restful holiday period.

Harry

‍

It's been 3 weeks since we made the Visible beta app available to test, and today we’ve launched a new version.

I’ve previously written about how important it is that we’re open about what we’re building at Visible, so here’s an insight into how we’re responding to some of the feedback we’ve received, what we’ve been up to in the last week, and what we’re working on next.

What’s in the new beta app version?

Improved Today tab

We’ve had lots of feedback that many people like to complete their evening check-in after midnight. This could be for a number of reasons including sleep issues, brain fog, fatigue, being otherwise preoccupied.

We want to make it easier to do this.

We’ve made some changes today to the Today tab in this update. The new design makes it clearer that each evening or morning check-in is associated with a certain date selected along the top of the Today tab.

For example, by tapping on the previous day’s date along the top of the Today tab you can now directly access yesterday’s check-ins and add your info.

We’ve also removed the ‘Plus’ button in the bottom navigation bar, which was a confusing way to access your check-ins. This is a great example of how your messages are helping to improve Visible.

Period and crashes in the Trends tab

This week we’ve added both period data and crash data to the Trends tab.

If you have periods, your menstrual cycle can have an impact on your symptoms, and the Trends tab can help you spot which symptoms are impacted and when.

Crashes, which we define as lengths of time where your illness is significantly worse, have also been included. This should help you better understand what can cause them, whether it’s exertion, periods or something else you’ve noted. We hope this will be helpful in pacing yourself to avoid crashes.

What are we working on next?

We’re already looking forward to the next version of the Visible beta app, and we’re working on the following:

1. Adding medication tracking

Now that we’ve added the period and crash data to the trends tab, it’s easy for us to add other factors that impact your illness too. So next week we’ll be adding basic medication tracking in a similar format. (Thank you to everyone who suggested this feature and your feedback on our early designs.)‍

2. Improving heart rate readings

We know that some people are experiencing issues with the morning check-in and we’re working hard on improving the heart rate readings and getting these fixes out as soon as possible.

Over the next couple of weeks we’ll be making an update to improve the reliability of readings on Android devices and in late January we’ll be making an update to improve the signal quality on iPhones.

3. Updating the Morning Pace score

Over the past 3 weeks we’ve collected over 1 million data points including symptoms, sleep and heart rate data. We’re incorporating all of this into a major update to the Morning Pace score algorithm and design which we’ll be adding to the app in the coming weeks.

Anything else?

In the background we’re continuing to work on our wearable integration, Visible Plus, and our Founding 100 group will receive a major app update to test in January before we make it available to those on our waitlist.

We continue to have requests for access to Visible from people around the world. We’re keen to make Visible available to everyone and we’ll continue to keep you updated on new supported countries via Twitter and here, on our blog.

Your support

As always, please keep the feedback coming, over the past 3 weeks we’ve received over 1,000 messages. It’s incredibly motivating for the whole Visible team and helps us improve Visible every week so we can keep moving our understanding of these conditions forward.

Thanks so much for your patience and support.

Onwards,

Harry

It’s been two weeks since we launched the Visible Beta app. We now have more than 10,000 people helping to test what we’ve built, a number that has doubled in the last week.

As more people have joined the beta, we’ve received lots of feedback (and bug reports!) from the community. I want to say a huge thank you to everyone who has taken the time to message us.

We’re listening, fixing, and building each day to make Visible the best platform possible for invisible illness.

Today we’re releasing our latest app update that fixes a few issues and adds some new features. Make sure your app is up to date to get the latest changes!

You can now add notes

We’ve had a lot of requests for adding notes to help keep track of factors that don’t fit into the fixed rating scales. Long Covid and ME/CFS vary a huge amount from person to person, so we know that this flexibility is very important.

You can now add a free-form note at the end of your evening check-in. These notes are editable from the “Today” tab, and in a future update they will appear on the charts in the “Trends” tab too.

You can now track crashes

We’ve also added a way to track “crashes” in the evening check-in. We know different people have different ways of describing a significant worsening of symptoms, but we’ve tried to find a term that works for as many people as possible and so landed on ‘crashes’. Perhaps in the future, we can make this word editable.

Tracking crashes will allow us to collect structured data around these events, which will help in building algorithms that help predict and reduce the chances of them happening.

You can start tracking crashes in your evening check-in by going to Profile > Trackers > Other Factors.

Similar to notes, recorded crashes will appear in the Today tab, and in the future, they will also appear on the graph in the Trends tab.

What’s next?

We’re still working on a lot of the feedback that we received last week, including

• Fixing issues with the morning check-in (This is our number 1 priority!)
• Adding medication tracking
• Updating the Morning Pace score algorithm

In the background we’re continuing to work on adding research studies and our wearable integration.

We’ll keep you updated on our progress with all of this via Twitter and via email.

Lots of work for us to do!

Harry

‍

What an incredible first week! We launched Visible’s open beta on Monday, and in that time more than 5,000 people have already started testing the app. This is massive progress towards our mission of making invisible illness visible, and we couldn’t be more pleased.

People living with ME (and now Long Covid) have been neglected for too long, and we strongly believe that Visible is a huge opportunity to pool our knowledge, data and voices together to move our understanding of these conditions forward.

I’m grateful to everyone that has generously offered their precious energy to help us test the Visible beta app and provide their feedback on what we’ve built. We have a lot of work to do over the coming months, and this feedback is so important to help us build a platform which is specifically designed with our conditions in mind.

Building in public

A few weeks ago, I wrote about the importance of ‘Building in public’ with Visible. This is one of our first posts to respond to some of the frequent questions and feedback we’ve received so far, and also share what we’re working on next.

Top 5 feedback points

International availability

At launch, Visible was available in the following countries: US, UK, Canada, Ireland, Australia.

We chose these countries because they had the most sign-ups on our waitlist… and because our 1 person support team (hi Ed!) only speaks English!

But we want to make Visible available to as many people as possible, as soon as possible. That’s why since Monday, we have added Austria, Germany, Norway, Netherlands and Mexico to the list.

Rolling out internationally is resource intensive, but it’s something we want to do more of. We'll send updates via Twitter and email as we make Visible available in additional countries in the coming months.

Log-in issues

We’ve had a few people getting stuck signing up via email, specifically, the button on the ‘Sign up’ email wasn’t working as reliably as we’d hoped! This affected a few hundred (very patient) people.

We’ve now added a back-up option that will email a code you can use to sign-up to the app. If this affects you, make sure you’ve got the latest app update.

Wearable data

We don’t currently support HRV data from Apple Health or Garmin and this is something a lot of people have asked for.

We are working on Visible Plus, our wearable integration in the background, and we'll be sharing more about this soon via our blog.

Morning check-in

We’ve had multiple reports of users having issues with their Morning check-in being low-quality or not completing, and we’ve confirmed this in our error logs.

We’re working hard to investigate this. So far, it looks to be the newer Samsung and Google Phones (particularly the Pixel 6 and 7) that are most likely to be affected. This issue is likely a larger one for us to fix, and is one of our highest priorities.

Color scheme

When we initially designed Visible we had light sensitivity in mind and so picked a darker colour scheme. We have however had some messages that light text on a dark background isn’t always best for everyone. Similarly our transitions from dark to white within the app are jarring. We now have an accessibility review of the app planned for early next year.

What else are we working on?

We have had a lot of requests for other features, and have narrowed them down to the following four that we’re working on over the next few weeks:

• Free-form notes
• Medication tracking
• Crashes tracking
• Updated Morning Pace score algorithm

We’ll be doing this in parallel to working on Visible Plus (our wearable integration), which we’re currently testing with our Founding100.

Your support

I hope this post show’s how important your messages and feedback are to us in building Visible. Please keep them coming! We read every single one and they all help us to build the platform that we badly need.

You can get in touch with us either from the in-app ‘Help and Feedback’ section or email us directly at info@makevisible.com

On behalf of the whole team, I want to say thank you for supporting this launch. We’re working hard on new and improved versions of Visible coming soon, and are looking forward to getting another step closer to making invisible illness, visible.

Onwards,

Harry

‍

It’s been 131 days since we shared the first version of the Visible app with a small group of people living with Long Covid and ME/CFS. In that time, the Founding 100 have tested the app, shared their feedback and captured more than 76,000 data points on their conditions. Thanks to them, we’re ready for the next step.‍

Today, we’re opening up the Visible beta to the whole community.‍

As someone who has been living with Long Covid for 2 years, it's great to be making this progress.

At Visible, our mission is to use data to increase our collective understanding of invisible illness. With today's beta launch, we’re one step closer to achieving this.

How can I get involved?

You can now download the Visible beta app, for free, from the Apple App Store or Android Play Store.

Visible is designed specifically for people living with Long Covid and ME/CFS. The app lets you track and see trends in your symptoms, measure your body’s signals (including Heart Rate Variability) with your phone’s camera, and contribute data to global research.

We take your privacy really seriously. That means that we will never sell your data, or share it without your permission. If you decide to opt-in to a research study, then the data we share with researchers will be completely anonymized.

What does beta mean?

From day one, our philosophy has always been to focus on making something people want to use. To achieve that, we're committed to sharing early versions to see if we’re getting it right, before improving the platform based on that feedback.

This means that the Visible app is changing all of the time. It also means that certain features aren’t perfect or simply don't exist yet.

Your feedback is invaluable in helping us improve the platform, so we’d love to hear it! We’ll be sharing optional surveys where you can have your say, and you can always get in touch with the team directly from the Help and feedback section of the Visible beta app.

What about the wearable?

If you’ve been following Visible for a while, you’ll know that our ultimate aim is to use wearables to help people to understand their illness and pace their activity. In the background, we’ve been working hard with researchers to build a wearable platform for people living with energy-limiting illnesses. And it’s almost ready.

We’ll be releasing our Visible Plus wearable subscription in the New Year. If this is something you’re interested in, then you can join the wearable waitlist from inside the Visible beta app.

Harry

CEO

Progress in the treatment and understanding of invisible illness* is frustrating. Research can be slow and the results are only published after months (or years) of work.

At Visible we want to do things differently.

We want to be radically transparent in everything we do.

We’re going to build Visible in public. This means that we’re committing to updating our blog once a week to show you what’s going on behind the scenes in our virtual office space. 

We’ll be sharing the how, the what, and the why behind the things we’re building, and put them on our website for everyone to see (this means the triumphs along with the challenges!).

Why we think building in public is important

We want to be clear that we are led by science.

We know we’re building for people with illnesses, particularly ME, who have had to endure gaslighting and graded exercise therapy for decades. It’s important that we’re consistently clear about where we stand, champion an evidence-based approach where possible and provide a fair, balanced view where the evidence is lacking. 

Not everything we do will help everyone with an invisible illness. We want to be open about why that is.

The Visible team deeply understands the problem we are trying to solve (in fact, many of us are living with an invisible illness), but we are equally humble to what we don’t know, and aware that not everything we do will help everyone.

As a very early stage start-up focused on invisible illness, we’re limited by the amount of money we can spend, what features we can build and how quickly we can work (especially considering that most of us are sick).

This means we’re going to have to make some tough decisions, particularly as these illnesses are so diverse, about what functionality we can and can’t support and timelines for delivering them. It’s only fair to the community that we make our thinking behind decisions clear.

We want to increase our collective understanding of invisible illness

While first and foremost we’re building an activity tracking platform for illness, what’s really driving the Visible team is the need to increase our collective understanding of invisible illness. We hope by being open about our work we can contribute to the community’s knowledge and also attract researchers to collaborate with us.

We want to provide optimism for the future

Having an invisible illness can make it hard to see the light at the best of times. We hope that by building in public we can share some much-needed progress and some hope for the future.

Onwards,

Harry

Over half of the team at Visible have an invisible illness.

We know that people with chronic conditions are the experts in their conditions. That’s why we want to involve as many people as possible in building Visible.

When we first launched the Visible website back in November, we had over 3,000 people sign up to register their interest.

72% of people who signed up to our waitlist said that they wanted ‘to help shape and advise the Visible platform’.

So earlier this year we asked the first 100 people who joined our waitlist if they wanted to be part of our “Founding 100”. Working closely with the Visible team via a Facebook group, the Founding 100 have been helping to:

• Test the latest features by using our beta app (including finding and reporting bugs)
• Build the Visible brand by giving feedback on things like our app screen designs and website
• Provide advice on our roadmap by requesting and upvoting the most important features.

In return, the Founding 100 will get access to our beta app and a year’s free membership to Visible's wearable subscription, when it launches.

We’re really excited to work with this group, and we think it’ll help build the most useful tracking platform possible for what are very diverse illnesses.

We can only manage 100 people so far, but as the Visible team grows, we’re really keen to expand this too, so make sure you’re signed up to our waitlist for when the time comes.

The Visible Team

Hello! 👋

This is a (fairly) brief overview of how we write and talk about invisible illness here at Visible. Many of our team have lived experience of invisible illness, but we also recognise that as we continue to grow, not everyone will have lived experience or be familiar with how to write and talk about these conditions.

So we’ve created this guide to help them, and we hope it helps others who are new to the world of invisible illness.

What do we mean when we talk about invisible illness?

At Visible we support conditions that benefit from rest and pacing and lack an accepted diagnostic test. Sometimes we’ll refer to these conditions as “invisible illnesses”, though we’re aware that there are other conditions that are invisible, like mental health conditions.

Sometimes we’ll refer to the conditions we support as energy-limiting conditions. Though this is not a well-known term and it puts an emphasis on fatigue when sometimes this is not a person’s most debilitating symptom. 

We use the term ‘people’

People with invisible illnesses can often feel dehumanized when seeking medical care. When referring to our users in the third person, we prefer to say ‘people’, not ‘patients’. We are people after all.

We recognize that every person has an individual experience of invisible illness

Regardless of what diagnosis an individual might have, no two experiences of invisible illness are the same. Symptoms, severity and experience of these illnesses can vary widely as can peoples’ response to different interventions. We want to share strategies based on sound science rather than subjective opinion.

We never promise recovery

Some of our users will recover, but some will not. Our aim is to support improvement or management of symptoms with the hope of improving quality of life. We’ll never promise recovery or a cure.

Improving mental health can be an aid, not a solution.

Wherever we encourage strategies to support mental health we should be clear that these are not solutions. We ask our users to consider emotional stressors but understand that these don’t cause these conditions.

We don’t choose how people feel

Words like ‘suffering’ are words for people to use about their own personal experience, it’s not for us to project onto them. For example, instead of ‘suffering from’, we can use ‘living with’ or ‘have’.

We keep our writing as concise as possible.

Some of our users (and our team!) have brain fog. We do our best to keep it short and simple.

Finally, we take an optimistic approach.

We aim to write with optimism and with the belief that our understanding of these illnesses will only improve. We can guarantee there’ll be no photos of people in bed with their heads in their hands.

As a very early stage start-up focused on invisible illness, one of the first decisions we’ve had to make is which illnesses to focus on for our initial launch. As a small team (most of us live with invisible illnesses ourselves), we have to be realistic about the fact that we can’t build something that will support all types of illness right now. We’ve had to consider things like how many people we could help, how much we could help them, and what relevant experience we currently have on our team.

With that in mind, we’ve chosen to focus on Long Covid and ME/CFS. These two illnesses overlap closely; many of the pathological observations of Long Covid, including changes in immune, cardiovascular, metabolic, gastrointestinal, nervous, and autonomic systems, are similar to that observed in ME/CFS [1]. Those with ME/CFS and the majority of those with Long Covid [2] also share a major common symptom, Post-Exertional Symptom Exacerbation.

These similarities mean we can help a lot of people with a similar amount of work. Our founding team also has both ME/CFS and Long Covid, first-hand experience of the condition and feel we can bring some much-needed support to this area

When we looked at our sign-up forms, we found that 92% of people with ME/CFS or Long Covid wanted help managing their Pacing (interestingly it didn’t matter which of the two illnesses, the percentage was the same). So we’re very focused on helping to solve this problem.

But ME/CFS and Long Covid aren’t the only illnesses that can benefit from Pacing. Here’s a list of other illnesses that the team has compiled that also share Post-Exertional Symptom Exacerbation as a key feature:

• Fibromyalgia
• Dysautonomia including POTS
• Post-Concussion Syndrome
• Ehlers-Danlos syndrome
• Post-Treatment Lyme Disease Syndrome

We know there is a lot of crossover between all of these conditions, but we don’t currently have the resources at Visible to know by how much. So while we’re focusing on ME/CFS and Long Covid for now, we hope that in the very near future we can expand to cover other conditions too.

If you'd like to make a suggestion for any other condition(s) that benefit from rest and pacing that we've missed, just send the team a message info@makevisible.com and we'll happily add them to our list!

The Visible Team