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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

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 all of your 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 to-date.

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 research@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

‍

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

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

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.