Harry Leeming was cycling across continents – until long COVID hit.
Harry Leeming was in good shape! He was young, he exercised daily, had climbed mountains, and even cycled across continents. An engineer in the electric car field, he was making a difference as well.
Then, in September 2020, Harry came down with COVID-19. No big deal, he thought. He was, after all, the picture of health. This was going to be a breeze! It was at first, but then as the weeks went on, the symptoms began to pile up. Soon, athletic Harry struggled to stand and eventually became mostly bedbound.
Then he made his fateful decision. On his doctor’s advice, he started to push himself. Five days later, he checked himself into the hospital and has never been the same since.
Harry Leeming intimately knows the costs of not pacing.
Visible
Visible“We’re making invisible illness, visible.”
Enter Visible. Visible – Harry’s brainchild – potentially presents a revolutionary development in wearables for long COVID, ME/CFS, and similar diseases – one that could impact not just the health of the people that use it but the long COVID and ME/CFS fields as well. The company has long-COVID roots, extensive experience with app development in the startup world, and, in a nice twist, has focused on getting funding from investors who have skin in the game; i.e., they are personally acquainted with these illnesses.
ME/CFS and related diseases have long been considered an “invisible illness” because most people look fine and standard tests are usually normal. It’s not normal, though, to have your heart rate boom or heart rate variability drop when a person sits or stands. That’s where Visible comes in: it produces hard data that helps you pace better and ultimately feel better. Here’s an opportunity to kiss goodbye (as much as possible) the push/crash cycle.
The app will allow people to regularly measure their body’s biometric signals using their smartphone camera. This data is overlayed with symptoms, exertion, and other factors (medication, menstrual cycle) to help users understand their long-term progress and spot patterns in their illness. Users can also opt-in to share their data anonymously with researchers including Imperial College London.
In the new year, they will launch Visible Plus, a monthly subscription that includes a bundled wearable device, that will provide real-time pacing guidance and illness-specific metrics.
Interview
I was glad to be able to chat with Harry about Visible.
What were you doing before you became ill?
I used to be an engineer, I started out in Formula 1 and then spent time in the US developing electric vehicles.
Your bio says you’ve climbed mountains and cycled across continents! You were in good shape! Can you say more about that?
I’ve always loved the outdoors, and time off work usually involved getting into the mountains as fast as possible. I climbed Mt Blanc a few years ago, and I’ve cycled across various countries and mountain ranges including Iceland and the Pamir Mountains in central Asia. I can safely say nothing has been harder than 2 years of Long Covid.
The Visible app – available Nov 22nd – was created specifically for people with long COVID and ME/CFS.
Tracking devices and apps are all over the place – I use two of them myself. Why create another one?
Harry: I’ve had long COVID for over 2 years now. I’ve been frustrated that while billions of dollars have been put into wearable devices to help healthy people manage their fitness, none really work with serious complex chronic health conditions like long COVID and ME/CFS to manage their activity.
I’ve had to use fitness trackers that encourage workouts and exercise, instead of rest and pacing. They’re not optimized for reducing PEM. That’s frustrating given how helpful good wearable sensors could be for conditions like long COVID and ME/CFS.
For example, like many people with complex health conditions, I have dysautonomia, and while all my blood tests come back normal, I can see through my wearable data that my body is not responding correctly to simple stressors that are not accounted for in the current health tracking devices like being upright – whether sitting or standing.
Other chronic illnesses like diabetes have advanced technology to help people manage their condition; it should be no different with ME and long COVID. Just as people with diabetes control their glucose levels via metabolic tracking, people with ME and Long COVID need to be able to control their exertion levels. We’re building the tools to help do that via ANS tracking.
In the short term, wearable technology can help us understand how we can better manage these stressors and improve our pacing. In the longer term, this data can be used to create digital biomarkers for energy-limiting illnesses that can be used in research and clinical trials. Biological data points are what researchers and pharmaceutical companies crave. Plus, a good wearable can provide data on functionality – something crucial for disability claims.
Being able to help people like me and move the science forward at the same time is what motivated me to build Visible. Easily accessible wearables have the potential to do this on a massive scale.
How did Visible come about?
In November 2021, I spent some time in Mulhiem, Germany trying apheresis where I had the opportunity to assist leading researchers in investigating the impact of microclotting in long COVID and ME.
Through that experience, I was introduced to Dr. David Putrino, Professor Resia Pretorius, Dr. Asad Khan, and many other researchers. Their agreement that a platform like Visible was badly needed gave me the impetus to take on Visible full-time.
Since then, Visible has been collaborating with researchers around the world. Our team has not only lived experience of these conditions (EDS, ME, and long COVID) but is also at the top of their game in engineering and data science.
So exactly how is Visible different?
It’s helpful to think of Visible as two things: it helps measure your condition and it helps manage your condition.
Visible measures long COVID and ME by using biomarkers that are specifically designed for these conditions. For example, the two we’re working on right now include UpTime and Orthostatic Intolerance (i.e., automating the NASA lean test).
All the other tracking platforms and metrics are designed for healthy people and are using metrics such as steps to encourage activity and exercise, not rest and pacing. We’re trying to take the guesswork out of pacing so that you can optimize your health and your activity and avoid the push-crash cycle that we are so familiar with.
Visible helps to manage long COVID and ME by starting with a heart rate monitored pacing guidance strategy developed by Todd Davenport – a physical therapist and published author associated with the Workwell Foundation (and one of our medical advisors).
Our wearable and app are set up to send real-time pacing notifications based on current and cumulative heart rate. Over time, we will extend this to other sensor data and will apply machine learning to provide the most accurate pacing guidance.
Another novel feature of Visible is the collection of postural data. The upper arm location of the Polar device gives us incredible insight into the body position. Since we know that dysautonomia underpins many complex chronic conditions, it’s crucial we capture challenges to your autonomic nervous system that come with upright activity, understand how your body responds to those challenges, and provide data-driven guidance.
We also have research studies that users can easily (and explicitly) opt-in to within the app to share their data directly with researchers. Our first in-app study is with Imperial College, and we’ll be announcing more details in the coming weeks.
Visible to all: A commitment to building out Visible publicly. You stated that you’re committed to building Visible out in public. Can you explain why you want to do that and what you mean by that?
We’ve decided to be radically transparent with Visible. We’re going to be putting out about a blog a week as we build out Visible to explain why we’re doing what we’re doing.
With our small team – most of whom have an invisible health condition – we have to make some tough decisions about the functionality we can impart to the app, the conditions we can support right now, and the timelines for developing them.
For instance, while we recognize people with other conditions such as fibromyalgia, dysautonomia – including POTS, post-Concussion Syndrome, Ehlers-Danlos Syndrome, and Post-Treatment Lyme Disease Syndrome experience post-exertional malaise, we’ve chosen, for the time being, to focus our efforts on long COVID and ME/CFS. Because Visible is intended to go beyond being an activity-tracking app and actually help contribute to long COVID and ME/CFS research, I hope that researchers will be excited by what we’re doing and how we’re doing it and decide to collaborate with us.
The Future
“We know we’re building for people with illnesses, particularly ME, who have had to endure gaslighting and graded exercise therapy for decades.” Visible
The app is now available in ‘Open Beta’, which means it’s available for anyone to download test, and use, as they continue to develop the Visible platform. You can download the app here and read about the beta launch here.
The free app lets you measure your heart rate variability using your smartphone camera, see trends in your illness, and share your data with researchers.
You can also sign up to be on the waitlist for Visible Plus. Visible Plus is a subscription that includes a Polar armband with access to real-time pacing guidance and illness-specific metrics and will also be available soon. Sign up to be on the Visible Plus waitlist.
A wearable is coming.
More on Visible
- Founder podcast (1hr): Harry/Visible journey.
- Medical advisor podcast (30mins): Some insight from our medical advisor Dr. David Strain into using HRV to measure these conditions from 11 minutes onward.
- Blog post (2 min): Harry’s personal story.
- Presentation at the Long Covid Physio Conference (5 mins).
Coming up – digging deeper into Visible’s unique methodology
Very interesting product. I’ve done some work in 2016 before giving up because the wearables were neither accurate nor precise enough to be useful for hyper-sensitive conditions like ME/CFS. It seemed to me that you need medical grade devices, not consumer devices intended for healthy people, to be useful.
Measuring the condition, and therefore making it visible, is straight forward enough. I found that the time spent lying down correlates 80% to my condition. Likewise the walking speed. Measuring the exertion, on the other hand, was something I wasn’t able to figure out. Heart rate and cumulative heart rate measured at 1 min interval did not yield anything useful. Fitfit can do it at 10 sec intervals, so maybe that may yield something better. Calories, aged and accumulated, did much better in my experience for whatever reason when summed over 4 days. In fact, that’s how I discovered the effect of flu shot and learned to lay low for 2 weeks after the shot. (Which I’m doing right now). Still, it only had 40% correlation at most, too low to be generally useful.
I hope this app will be useful enough for managing PEM which is the single biggest problem for ME/CFS patients. I’ll look forward getting my hands on it.
You’re definitely the kind of person who should get their hands on it. Looking forward to hearing what you think. 🙂
Hello from New Zealand. We are in desperate need of something like this but, I have gone to app store and says not available in my country. I wonder if there is any known launch in the coming months? Thank you.
Yes, agreed
Same, I’ve reached out to Visible for an ETA for New Zealand customers but zero response. We desperately need it, we are so far behind other countries in terms of public health support for ME/CFS, and only one LC clinic which closed. Having a device and app specifically for helping us manage our pacing and recovery would be amazing, I keep researching available devices (Fitbit, Garmin etc) but they’re not designed with chronic health conditions in mind. Please help us get an NZ launch date for Visible monitor and app!
I’m very excited for this! At the beginning of this year I started using a Garmin Instinct watch along with a PowrLabs chest strap to track my heart rate 24 hours a day (the watch is accurate when I’m lying down or sitting but when I’m standing or walking my pulse weakens and it has trouble tracking my hear rate, therefore the chest strap which is then read by the watch). I have found it has helped a lot. It hasn’t necessarily helped improve my health as much as reduce the number of times a month that I over do it and have to stay in bed for several days. I have Chronic Fatigue, mild POTS and now post covid. Keeping my heart rate under 100 bpm as much as possible helps me to reduce post exertional malaise. Current apps are always encouraging me to get more activity which of course would only make things worse. I’m very thankful to Harry for developing this app as I believe that It’ll help me to more effectively manage the little energy that I have left.
Doesn’t this “when I’m standing or walking my pulse weakens and it has trouble tracking my heart rate” speak volumes about the effect being upright has on you – yet until this device comes around – we’ve had no ability to really track that or incorporate it into studies. Since not all treatments would affect blood flows researchers could use this device to assess which treatments best assisted with improving blood flows during upright activity.
Plus we should be able to uncover what subset of ME/CFS patients have the most problems remaining upright and ultimately link that to specific biologic abnormalities. While we have the tilt table to do this – its a one-time, stressful intervention that many people don’t have access to.
We could also check out circadian issues with blood flows. For myself I would be shocked if this device didn’t show that I have more problems remaining upright in the morning than the afternoon.
I was just out of a BA in Engineering when I got sick and am always thinking if we can get a good set of sensors and methods to predict energy usage and a baseline, algorithms to forecast upcoming energy{because of the delayed part of fatigue} we could basically create a readable battery meter. HRV is one way to go. Will be very interested to see what they have come up with.
I could imagine, though more invasive, that a lactate sensor perhaps like the wearable diabetes ones, coupled with hrv could be better at catching the upcoming PEM after exercise but before the body gets too much inflammation.
Hey fam. I’m just commenting to beg you to make sure the wearable is available in nz (Aotearoa NZ,). We don’t have bivalient boosters here and I’m desperately trying not to die from long covid. Please consider letting us get it here. Begging. I and many others are suffering
What an amazing young man. I signed up on the waiting list and am looking forward to the App launch on Nov 22nd. Was also very pleased to see that Susan Vernon and Bateman Horne are involved. Cort, did he mention anything about the effectiveness of his apheresis treatment in Germany?
Je me suis également inscrite sur la liste d’attente. Bravo pour ce genre d’initiative. Egalement intéressée par son traitement d’aphérèse en Allemagne . Peut-on en savoir plus ,Cort?
Translate
“I also put myself on the waiting list. Bravo for this kind of initiative. Also interested in her apheresis treatment in Germany. Can we find out more ,Cort?”
When I asked Harry how he was doing and what helped he said he was doing somewhat better and that pacing helped. He did not mention Apheresis – maybe he will come on and say more.
Hey Cynthia, Hey Claudine. Apheresis unfortunately didn’t help me long-term. I would add that my blood was tested for micro-clots before and after treatment, and it did effectively clear them, although they did eventually come back. My symptoms were up and down throughout.
Interesting = not surprised that microclots are not the total answer as anti-coagulation therapies seem kind of hit and miss in long COVID. I’ll bet they are just part of the puzzle. No surprise, really – to think that just one thing is not it.
Thank you, Harry Leeming and team! You’ll help countless people with this technology, and I wish you all the best. And I especially pray that you’re restored to good health. Cort, thanks for bringing the latest and best news to the ME/CFS community.
Harry, thank you for the info regarding your apheresis treatment.
Awesome!! Simply cannot wait – am very grateful to (and impressed by) Harry. Count me in.
It is very, very encouraging that Todd Davenport (Workwell) is involved – we need this.
But it is just another HR/HRV tracker. You can just go buy a Garmin or Polar device, not sure what the fuss is about.
Seems like another person trying to profit from sick people again.
Not so, Andy! The heat rate pacing strategy is being developed by an ME/CFS specialist – Todd Davenport who wrote a seminal paper on Physical therapy and ME/CFS for physical therapists.
Plus, over time, “they will extend this to other sensor data and will apply machine learning to provide the most accurate pacing guidance.”
Plus if you get the device it will include postural data.
Plus data from the app is being used in an ME/CFS study and they hope it will be incorporated into other studies. For me, I really like that double benefit: find a more effective way to pace and support ME/CFS research at the same time.
Postural data is so important because it will show researchers that simply being upright – something that’s never been measure using a wearable – can be a huge stressor for many people with ME/CFS and long COVID. That should really open some eyes (just sitting can be stressful for some!), put more focus on blood flows, and highlight just how functionally disabling ME/CFS and long COVID can be.
Lastly, while the device, of course, will cost something – the app is free. Maybe you should try out the app and then, if you’re interested in the device, see how others are doing with it before you invest in it.
When I was working on this, Polar device used to be the only one that gave you the statistics on time spent lying down. Fitbit, on the other hand, can’t tell because you wear it on the wrist. It has to be on the torso or upper arm for posture detection.
When will it come to canada?
Some people have reported success with HR/HRV tracking though I haven’t been able to. Even when it works, it’s a rather crude tool that won’t prevent PEM at times and can stop you well before hitting the real PEM threshold at other times. One example is doing a squat or two. Your bloodstream has enough O2 and fuel to power through it, raising heart rate only by a few beats with a few seconds of delay and then quickly comes back down. Yet, I used to crash the next day when I do that. Inversely, there were times when my heart rate stayed well above 120 going up SF hills, thanks partially to Sudafed, and I was fine the next day.
Ideally, it would be nice to have a device that can predict what your condition will be tomorrow based on what you did today (and a few preceding days), and therefore be able to tell you to stop/slow down before causing PEM. Whether or not this app will do something like that for ME/CFS, I guess we’ll have to see.
TK, a little off topic, but what does Sudafed do for you?
Tracey, I started taking it to relieve the head pressure. Then I found that it also partially relieved my fatigue and ache. I used to experiment with it if it would prevent PEM too, but it didn’t appear to be.
Pseudoephenedrine normalized my heart rate and blood pressure.
I found healthier ways to do achieve the same, by addressing hormones and nutritional deficiencies
While pacing helped, weather events and summer heat/sun sent me back to square one, not being able to stay upright for much.
Hormones and nutrition addresses the problems for me.
How does a camera measure heart rate and the heart rate variability? I thought contact with the body was necessary to measure those. I can see where an arm band can measure heart rate, so that part seems essential to me.
“ The free app lets you measure your heart rate variability using your smartphone camera”
Existing Apps like HRV4 and WellTory use the phone camera for heart rate variability, so it is a known & tested method. Excited that the Visible APL will have pacing Information and messaging
Please explain HOW the camera works. Do you have to carry it constantly? Etc.
Morning HRV Apps often use the camera for the HRV reading. Works by holding the finger against the phone camera for the duration of the HRV reading.
Other trackers eg Polar devices link to the phone to give HR etc during activity & usually depend on the Bluetooth connection to link to the app being used.
I use Welltory. The camera works by measuring the colour changes in your finger as blood is pumped through it. You hold your finger against the camera while the app measures. It’s remarkably accurate.
But I’ve signed up for Visible Plus, so I can get the arm device at that time.
Sarah L You use the camera on your smart phone by putting your finger over the camera lens and it can extract the data (I think by reading colour changes). Some phones have a separate sensor to use.
This is welltory’s (and hrv app) explanation
https://help.welltory.com/en/articles/4412277-taking-measurements-with-your-smartphone-camera
Thank you!
Hooray! Can’t wait for this. I use my Apple Watch constantly to check my heart rate and my rhr had decreased over a year to something approaching normal. A bad crash has undone a lot of this and I was dreading having to go back to cleaning my teeth in bed etc etc. But a different way – even a better way to monitor pacing seems like a dream come true. Can’t wait for Visible to appear! (See what I did there?)
hi Cort, suzan vernon was also at the beginning of the oura ring. tod davenport said on a recent webinar it was the least usefull. i had a ring, indeed…
also i found: on visible’s website “NOT MEDICAL ADVICE:
You agree that the Service constitutes a tool to help you identify what factors are positively or negatively affecting your health and to keep track of the long term trajectory of your illness, and that if you choose to utilise the service, you are solely responsible for deciding how you act in relation to your health. As such you agree that Visible is not a healthcare provider, and does not provide you with any actual medical advice.
Any advice or other materials provided through the Service and website (www.makevisible.com) are intended for general information purposes only. They are not intended to be relied upon and are not a substitute for professional medical advice based on your personal circumstances. PLEASE DO NOT USE “VISIBLE” FOR MEDICAL PURPOSES. IN CASE OF ANY INDIVIDUAL HEALTH ISSUES, CONSULT A MEDICAL PROFESSIONAL. ” the big captures say in fact as if i understand it, if something go’s wrong, we are not responseble and if you are ill, look for medical advice! and we are ill!
i saw recently a webinar of tod davenport/workwell foundation and he said (sorry my brain) take first HR waking up in bed and then maximum 15 beats above.He showed also a graphic because sometimes you need to go above or so. he also said that he works with patients (gave an example of 1 person who was not so very ill, that he worked with her for about a year on regular visits before she was “better”. he also sais due to brainfog with patients, etc, he did not use HRV but HR as it is severe enough to get that understood when ill. I really do not know what to think about this. Also what no wearable can measure is the cognitive work one does (and the light and the sound) and where you can crash from to. it is not about the money, but do not know what to think about this one. tod davenport indeed mentioned “the noise” of pots, etc you could get…
also, i thought this devise or was it the wearable (sorry brain) will put things to if you want or not if i understood it well.
and i thought it is apple and google only?
i do not understand the cellphone or have allready forgotten, if you need to look at it every “5 minites”, that is not so fun.
If i am wrong, if i did undrstood something not, please correct me…
i know on the 25% ME group one who “builded” her smartwatch not for activity but for pacing.
also you need to be capable to pace. not alone, not so severe, 2 hours helpservice a week and that is allready to much, etc
i really, really do not know. i am certainly not saying that pacing is verry important!!!
but maybe i did not understood a lot good…
I believe the wording about “not medical advice” is required because it is illegal for apps to market themselves as though they can solve your medical problems.
And indeed, when it tells you that your heart rate is doing a certain thing, or you should consider pacing down, it is making a statement about what it can measure and leaving your behavior up to you. Its advice is its own best guess (even though it’s informed by machine learning) and is indeed not a substitute for a doctor. If they market themselves as a medical device they will have to be prescribed by a doctor instead of free to all, that is how the law works. Which is unfortunate in some ways, but it’s meant to protect people from snake oil salesmen that tell them their cancer will be cured by this supplement. Nobody is saying that Visible will cure your ME. They are just saying it might be helpful by providing data you wouldn’t otherwise be easily able to access or track yourself.
thank you for explanation! but i thought even apps must have been labeled with a certificat that it measures right what it measures. here in my country for excample a CE label. with the oura ring i had the strangest things. when i was stiil somewhat better and i was watching tv in a recliner , it said i slept, i got morning notifications of a good day ahaid and was feeling misserable (staying in bed) and onther times it said rest and i was feeling fine. ofcource also (at least i hope) i hope i had with oura some good readings. I really hope to see later what other people find of it, its accuracy, how it really helps pacing, the measurements (added), etc ! ofcource no tracking device could cure long covid or ME. but some in the 25% group, verry ocasionally get a bit better by pacing. so pacing is indeed important. if you are in the circumstance to do that…
“ Also what no wearable can measure is the cognitive work one does (and the light and the sound) and where you can crash from to.”
My Garmin watch measures “stress”, its really HRV, and it definitely shows when I’m working cognitively and when I’m in a stressful environment.
I’ve found that mental activity affects my HRV/Stress reading and drains the ‘body battery’ function on my Garmin device. It also can raise my heart rate. I use a Garmin Vivosmart 4.
the 15 beats above waking up heart rate was for people who could not do a cpet or so test…the severelly ill ones.
sorry for confusion.
ps i do not want to be negative about this device…maybe i understood a lot wrong due to severe illness. i hope for a miracle…something… would it be available in belgium to and work on android?
This is very exciting! I joined the waitlist. Thanks for bringing this to our attention, Cort.
After my CPET in July, I researched which wearable would give me HR alerts (most will just alert you if you’re at rest and your HR jumps for some reason; I wanted one that would alert me as I was trying to do housework, let’s say). I settled on the FitBit Versa 3, which lets you use two different HR alert apps (Alert Me and HRPacing). One buzzes you constantly until you get your HR back down under your set threshold; the other buzzes you every so often when you go above. Both have their uses, I find. My test report said not to exceed 107bpm, which is super easy to do, especially with dysautonomia. Standing and frying an egg makes me exceed it!
The FitBit will only tell you your HRV overnight. Mine is low – between 15-25 most nights. I’m glad Visible will be able to tell me what it is during the day, and I like that it is a tool to help you with pacing because I am still struggling with that.
I am so greatful to you, Cort for what you do. Without your articles I would know next to nothing about my disease. You rock my world, (as limited as it is)!
Good stuff. Good luck with it Harry.
I’ve been using my Fitbit in reverse for the last few years. I set my “goals” for the level that I found was over exertion. So when I “met my goal” I knew I had overdone it. I did this for steps, calories burned, and heart rate. It was very helpful in learning to pace myself. It also required I reconfigure the heart rate categories based on an article I read on heart pacing for me/cfs. And I monitor my sleep quality. Technically I monitor the HRV, but it’s always very poor and doesn’t really fluctuate more than few points for the average.
This is soo exciting, I’ve lived with ME/CFS for 20 yrs, However, My H.R did not become an issue until 3 yrs ago when I suffered a severe crash, since then My Dr’s & I have tried all that is available but keeping my Heart Rate down remains a constant battle. I welcome ANYTHING that could help us with this issue. Thank You soo much.
so excited for this, thank you
Pseudoephenedrine normalized my heart rate and blood pressure.
I found healthier ways to do achieve the same, by addressing hormones and nutritional deficiencies
While pacing helped, weather events and summer heat/sun sent me back to square one, not being able to stay upright for much.
Hormones and nutrition addresses the problems for me.
So very needed.
Two years ago my long suffered but recently diagnosed ME/CFS was getting worse and I was being triggered into crashes constantly despite dramatically reducing activity and ultimately deciding to lie in bed all day.
I decided to try heart rate monitor pacing out of desperation and quickly discovered that when I walked a few metres to the bathroom my hr jumped to 160bpm.
I had realised that standing was particularly dangerous, but not cottoned on that things like sitting upright against a pillow at the head of my bed was using extra energy as well.
I still have awful problems with POTS thriugh autonomic issues and subsequent deconditioning, but my ME/CFS has become much, much more stable and I’m so glad I made that discovery.
I always suggest that other sufferers pick up a cheap wearable if they can because I swear I had no idea what was going on in my body.
I’m interested, but I think this is re-inventing the wheel. I have had a Garmin Venu since early 2019. The BODY BATTERY algorithm provides REAL TIME data that I can use *perfectly* to pace. It combines constant HRV /HR (maybe other metrics too, not sure) and presents it in a 5 – 100 scale. While it IS designed to tell a person when they can work out harder and optimize recovery etc, it is a no-brainer to use the data for pacing.
Originally when I first read about HRV pre-2019, I downloaded and used an app that utilized a phone camera, like this one talks about. It was a bit of a pain, you have to hold extremely still etc. and like the Oura ring (which I also have and which is NOT useful for pacing) the info was more about trends and works over days, not necessarily hours.
The Body Battery on my Venu, shows me ‘at a glance’ where I’m at, and if it’s been ‘draining’ to a certain point, I absolutely MUST rest. I can literally watch it (slowly) go up when I rest and relax properly (the difference between quiet deep breathing vs. laying down and watching TV or ruminating about something is noticeable). As well it tracks through the night and shows my ‘ups and downs’. Not just a measure in the morning.
My Oura can show a very nice ‘normal’ looking sleep pattern, but if I feel crappy I know it’s been ‘disordered’ sleep, the Body Battery graph shows what went on throughout the night. Combined with Venu’s ‘stress’ graph, it shows that though I was asleep and went through normal looking sleep cycles, my sympathetic nervous systems was running amok *at certain times* during the night. It really lines up with this–>
https://www.healthrising.org/blog/2013/04/02/bad-sleep-poor-research-until-now-study-illuminates-the-cause-of-the-sleep-problems-in-chronic-fatigue-syndrome-finally/
That said, the Venu IS a pricey item. Mine is the original (not V2) , it is cheaper than the current model and NO subscription. For me, it is worth EVERY penny and I couldn’t do without it. (Unlike the Oura, mostly a waste of money except the better sleep data than Garmin)
I’m interested in participating with this new APP. Looking forward to comparing it to what my Venu already does. Perhaps it will be an option for those who cannot put down 300 – 550 for a wearable. But I’ll be very surprised that the non-free version will do as much as my Venu does.
Have just downloaded the beta. Beautifully designed. As a PWME I still feel a bit invisible – the reading list is exclusivly long Covid – our Missing Millions scars are deep!
Lisa – the difference between the app and your Garmin will be the symptom tracking I think.
Sue, yes. Symptom tracker can be helpful for sure. I downloaded it too but so far haven’t been able to get it to take a reading. From past experience that works better with some phones than others.
Hey Sue, a few of our team have Long Covid and a few have ME, so we really do try to be balanced in everything we do.
It is difficult with coverage for ME, as Long Covid is such a hot topic, but we will absolutely try to bring more ME-based coverage to our content section.
thank you 🙏 thank you 🙏 for this !
if I had a siren that went off when it’s time to 🛑 and rest, it’d save me from doing one thing too much and crashing !
Hi, very grateful for the work you have done and sure this will help gather valuable evidence.
However, I completely refuse to accept that my Long Covid symptoms can be diagnosed as ME/ Fibromyalgia and CFS.
There is absolutely something pathophysiologically happening.
I have fought very hard to get test done and finally have found highly Ferritin levels- a sign of chronic inflammation, is present.
There has never been a credible explanation for ME/ Fibromyalgia nor CFS.
As a neuro rehab physio, with nearly 30 years experience treating MS, it was no surprise to me, when a virus has been found that triggers this autoimmune disease, given the history my patients told me.
It’s the same here.
Virus (Covid)
Body fights back but ‘off switch’ is deactivated.
Immune system goes crazy.
GP finally prescribed steroids when I completely lost my voice, no doubt inflammation of the vocal chords.
Feeling better, but not a long term solution.
I am going to fight for the correct diagnosis and treatment.
Have you ever tried steroids for your symptoms?
A lot of people with me/cfs had their condition triggered by a viral or bacterial infection. I don’t understand your implication that there is no pathophysiology involved with it.
ME has pathology. Maybe actually research about ME before showing your ignorance as to what ME actually is. You can find a whole list of potential biomarkers on the MEpedia. Look up the ME ICC primer for pathophysiology and testing. Bateman Horne also has a diagnostics primer at Mayo Proceedings. From what I’ve read about long covid research, so far the same things are found in ME. From microclots, reduced blood brain flow, immune metabolic and neuro dysfunction. PEM has measurable pathology. If you have PEM plus neuro, cardiovascular, immune, cognitive and metabolic impairments, you likely have triggered ME from a covid infection. Like it or not. But please at least read the literature before repeating misinformation about ME. Plenty of pathology to read about on this site.
I downloaded the app this morning and look forward to trying it out. The Visible website says it is now available on the App Store, but I couldn’t find it there. I’m in Canada, is it only available in the USA?
I couldn’t find it on the app store (I’m in Australia) so I emailed them through the makevisible.com website and they sent me a direct link which worked for me.
Yeah, I just downloaded and checked it out. At first glance, it appears to be just another HR/HRV app, only specialised for ME and long COVID. It would still be useful though, if it can relate the evening symptom severity reports and morning HR/HRV score better then existing apps. None I’ve tried was ever worth the trouble.
I’m very interested in trying this. However, as someone who has severe M.E., including cognitive dysfunction, I have been unsuccessful with other systems because it’s all just too complicated. Just typing this is a MASSIVE task for me (not to mention reading the article!). I’m intelligent but my brain just can’t do it anymore. Will VISIBLE be simple to set up, understand, use, and interpret, and take into account cognitive problems? Many thanks 😀
Contracted M.E /CFS 1998. Diagnosed A.D.H.D. 2016. This app is perfect for people like me. Pacing can be hard, I’m unaware of over exhaustion then I crash. This app. sounds really helpful to remind me to be more mindful.
I think if they get it to work with most wearables this could develop into something really good. I have an Apple Watch and dont really want another wearable. The app itself is pretty good. Uses the finger on camera measure net like Welltory. The app is quite simple which is good for poor cognition. So far it gave me a pace warning when I needed one and it doesn’t overly dramatise like weltory which often tells me I should see a Dr. I see the dr and they are not interested. So I prefer the visible interface but would like to see this develop to Welltory type tracking but without Welltorys naff and inappropriate messaging.
So for me it needs to be used with other wearables like my Apple Watch.
Would like to see the app access other iHealth data (like Welltory)
Real-time pace warnings
Long term projections and advice for potential rolling PEM. As in a warning when slowly degrading to pull back
Ability to share data with researchers
Ability to log BP – abnormal pulse pressure seems to be a common thing with pwME
Agree with Domhnaill comment above that a sensor like diabetics wear but for lactate or other blood marker would be a good goal to achieve in the future.
A live feature like Heartgraph would be useful during activities. Other good apps I use are Heart Watch and Auto Sleep.
I think this app could be a game changer for pwPEM so I’m supporting it and hoping it develops.
As a person with ME/CFS, I also have inappropriate sinus tachycardia. My average daily resting heart rate is between 90 and 95. Does this app allow for a higher than normal resting heart rate?
We’ve signed up & begun using the free app part. We’ll very likely go for the wearable – how much will it cost? Visible may not know exactly, but they must have some idea! I recently spent time researching wearables for my partner, who is now wearing my Garmin, with an Apple Watch on order for her Xmas present. My hopes of retrieving my Garmin are fading. She’s so excited by the possibility of better managing her energy that she’s now talking about wearing all 3!
Hi, this looks so great! I also heard about one on Garmin called Body Battery, and another for iPhone called WatchME. Does anyone know about these and how they compare? I’m not sure which one to buy.
Is there any chance it will be available in Belgium some day soon?
Would really love to use this…
I just got the update the Visible is launching their wearable tool. Cost is $70 and monthly subscription is $19.99 per month. How do they expect disabled people to afford that cost? So frustrating…..
When I go to the app store, visible is something else entirely related to communication. How can I find this app? I’m in the US
HI, Look for “Visible: Long Covid & ME/CFS” Activivity tracking for illness.
Hoping that helps ^:*~