FatigueSense app

Another thought.

I've just looked at the home page on Visible. It has 3 large clear buttons labelled something like morning check in, evening check, and monthly update (which is the Funcap questionnaire). Each takes you directly to some data to enter.

Contrast that with the Fatigue Sense home page which has 17 items, which are a jumble of homily, things to do, things to go to for information, and things that seem not to connect to anything, with no indication of a pathway to follow through the jumble.

I keep finding different things I haven't seen before and may never find again. It's just explained to me that PEM is not the same as a crash. Apparently in their terminology there are immediate fatigue and energy crashes that strike suddenly, and delayed PEM.
 
So my suggestion.

Make the front page just a clear short set of tasks, all visible at once, not scrolling through a long list.

Each task button takes you to a few things to fill in, eg today's symptom severity from a list of symptoms chosen by the individual for relevance to them. And a place to note anything significant today, such as doctors visit or PEM.

Make another page Information, where all the explainers are clearly set out, grouped under headings such as sleep, pacing, what HRV means etc. Make these condition specific and brief.

Make another page Your data, with graphs and tables clearly labelled including the possibility of an individual asking for a graph showing rise and fall of two or more measures on one graph, so their patterns can be compared.

Make another page today's feedback, with observations from current and recent data and what this might indicate about risks of PEM.

Ditch all use of LLMs and homilies. Ditch the app doing a pacing plan for the day and for specific activities. Ditch all attempts to give advice.

People need to be provided with brief, clear, condition specific information and simply presented personal data so they can work out their own management, and which if any of the data they find useful.

Add the FUNCAP questionnaire as an option for those with ME/CFS who want to track their functional capacity and illness severity over time, and relate it to step count, symptom severity and other personal metrics.
 
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Thanks everyone for taking the time to discuss FatigueSense. We’re currently in an active research beta and have been iterating continuously since launch last month, including updates directly informed by user feedback. Several features mentioned here, such as step target personalisation and activity-based PEM monitoring, are being improved.

While FatigueSense is been shaped with input from the ME/CFS community, we’re also learning from a wider group of users with different conditions and experiences. This helps us balance feedback and continue refining the app in a way that remains meaningful while evolving to support broader fatigue-related needs over time.

If you’re using the app, please do share feedback through the in-app option. It comes straight to us and helps us prioritise what matters most. Thanks again for the thoughtful discussion.
 
nanay said:
This helps us balance feedback and continue refining the app in a way that remains meaningful while evolving to support broader fatigue-related needs over time.
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This does not seem to square with the absurdities Trish has mentioned @nanay. We are dealing with real life here, not selling gadgets for the sake of it. We have no idea what to recommend for people with ME/CFS so I find it hard to see the ethical basis for this.
 
nanay said:
Several features mentioned here, such as step target personalisation and activity-based PEM monitoring, are being improved.
Click to expand...
Can you explain why the plan offered for me each day involves over 6000 steps, when I my step count from my fitbit which the app has been recording correctly have been daily between about 400 and 1000?

nanay said:
While FatigueSense is been shaped with input from the ME/CFS community, we’re also learning from a wider group of users with different conditions and experiences. This helps us balance feedback and continue refining the app in a way that remains meaningful while evolving to support broader fatigue-related needs over time.
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I think this approach makes the app likely to do more harm than good for people with ME/CFS. I hope you have read our fact sheet on PEM which I linked up thread. It explains why you can't set targets for set counts to be aimed for. Any use of step counts if at all is as a reminder not to do too much, not as a target to try to reach.
nanay said:
If you’re using the app, please do share feedback through the in-app option. It comes straight to us and helps us prioritise what matters most. Thanks again for the thoughtful discussion.
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I have put my feedback here because I find that more managable. I don't have the capacity to write it all out again on a small phone screen with one finger typing to go on the app feedback system to suit your convenience. I hope you or someone in your team will take the time to copy my feedback in the format that suits you.

One of the things patient advisory groups on research projects should be advising is about accessiblity and making feedback methods available in the format the patient can manage, not just to suit the researchers. I assume it 'matters most' to the research team to get a wide range of feedback including from severely affected people with ME/CFS in whatever format they offer it.

I apologise if this sounds a little short tempered. I am exhausted and ill. I want to help but I can't if barriers are put up to stop me.
 
Jonathan Edwards said:
This does not seem to square with the absurdities Trish has mentioned @nanay. We are dealing with real life here, not selling gadgets for the sake of it. We have no idea what to recommend for people with ME/CFS so I find it hard to see the ethical basis for this.
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Thanks for raising this. FatigueSense isn’t a commercial product, it’s a research-based app in active beta, and we’re very clear that it’s not designed to diagnose or solve ME/CFS, but rather a lifestyle-based tool people can choose to use if they find it helpful. It’s being developed with input from users across different fatigue-related conditions, united by the shared experience of chronic fatigue. We recognise and value feedback from the ME/CFS community, while also acknowledging it may not be useful for everyone and that’s completely valid. We’re continuing to evolve the app and hope it becomes increasingly helpful to the wider fatigue community over time.
 
Trish said:
Can you explain why the plan offered for me each day involves over 6000 steps, when I my step count from my fitbit which the app has been recording correctly have been daily between about 400 and 1000?


I think this approach makes the app likely to do more harm than good for people with ME/CFS. I hope you have read our fact sheet on PEM which I linked up thread. It explains why you can't set targets for set counts to be aimed for. Any use of step counts if at all is as a reminder not to do too much, not as a target to try to reach.

I have put my feedback here because I find that more managable. I don't have the capacity to write it all out again on a small phone screen with one finger typing to go on the app feedback system to suit your convenience. I hope you or someone in your team will take the time to copy my feedback in the format that suits you.

One of the things patient advisory groups on research projects should be advising is about accessiblity and making feedback methods available in the format the patient can manage, not just to suit the researchers. I assume it 'matters most' to the research team to get a wide range of feedback including from severely affected people with ME/CFS in whatever format they offer it.

I apologise if this sounds a little short tempered. I am exhausted and ill. I want to help but I can't if barriers are put up to stop me.
Click to expand...

Thanks for taking the time to share this, we really appreciate it, especially given how difficult that can be. We’ve noted your feedback here and will make sure it’s captured and considered as we continue improving the app.
 
nanay said:
FatigueSense isn’t a commercial product, it’s a research-based app in active beta, and we’re very clear that it’s not designed to diagnose or solve ME/CFS, but rather a lifestyle-based tool people can choose to use if they find it helpful.
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When I say 'selling' that includes earning 'research brownie points'.
I perceive a major ethical disconnect here.
 
nanay said:
FatigueSense isn’t a commercial product,
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Then you probably won’t mind addressing my previous comments regarding commercialisation of the app through a health tech startup?
Utsikt

Post in thread 'FatigueSense app'

@nanay - would you be able to elaborate on the this from your website?

Edinburgh Venture Builder​

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Enterprise and venture support linked to the University of Edinburgh.
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If this is this programme,
Venture Builder Incubator is designed for ambitious postgraduate students, early career researchers and academics who are looking to transform their deep tech or data-driven research into a viable business.
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How does that align with this previous statement of yours:
nanay said:
Finally, I think it’s important to emphasise context: this is early-stage...
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nanay said:
Thanks for raising this. FatigueSense isn’t a commercial product, it’s a research-based app in active beta, and we’re very clear that it’s not designed to diagnose or solve ME/CFS, but rather a lifestyle-based tool people can choose to use if they find it helpful. It’s being developed with input from users across different fatigue-related conditions, united by the shared experience of chronic fatigue. We recognise and value feedback from the ME/CFS community, while also acknowledging it may not be useful for everyone and that’s completely valid. We’re continuing to evolve the app and hope it becomes increasingly helpful to the wider fatigue community over time.
Click to expand...
I find that a fascinating response. My fitbit is a lifestyle based tool I have found helpful in alerting me to times I have been overdoing physical activity and connecting that to episodes of PEM. It has also helped a bit in confirming to me that my heart rate and resting HR can be a sign I am right to stop and rest. A sort of objective backup to what my symptoms are already telling me. If this were the sort of approach FatigueSense was helping new patients to try to see if it helps them, I could see the value. So far... well, you've seen my comments.

I have so far not seen anything FatigueSense does with my data to enhance what I get directly from my Fitbit. To the contrary, all I have seen so far is either added complication, self contradictory, or just plain wrong.

My main concern here is not whether it helps me. That's not why I agreed to try it. I wanted to help development of a really potentially helpful tool for ME/CFS. I hoped this might be it, with the promising start of using one's own wearable and incorporating it with personal symptom and exertion data.

However, the focus on lumping ME/CFS into a fatigue general app doesn't make sense for what I hoped for. Many people, me included, don't see fatigue as our primary problem. If my main problem was fatigue I would not have had to give up my teaching career and would not now be mainly confined to bed. I am sick, not tired.
 
nanay said:
we’re very clear that it’s not designed to diagnose or solve ME/CFS, but rather a lifestyle-based tool people can choose to use if they find it helpful. It’s being developed with input from users across different fatigue-related conditions, united by the shared experience of chronic fatigue
Click to expand...

I think there needs to be a recognition that the scope for this app is too broad. ME/CFS is not like other fatigue-related conditions because of PEM. It can not be included in a one-size-fits-all app concept of encouraging the person to do more. I think you need to specifically exclude patients with ME/CFS from the app's target audience — we need to do the same or less.

nanay said:
We recognise and value feedback from the ME/CFS community, while also acknowledging it may not be useful for everyone and that’s completely valid. We’re continuing to evolve the app and hope it becomes increasingly helpful to the wider fatigue community over time.
Click to expand...

Just to hammer home this point: the wider fatigue community have fatigue, they do not have Post Exertional Malaise, and they likely don't have orthostatic intolerance. Maybe you might create a separate app for ME/CFS down the line.
 
nanay said:
Thanks for raising this. FatigueSense isn’t a commercial product, it’s a research-based app in active beta, and we’re very clear that it’s not designed to diagnose or solve ME/CFS, but rather a lifestyle-based tool people can choose to use if they find it helpful. It’s being developed with input from users across different fatigue-related conditions, united by the shared experience of chronic fatigue. We recognise and value feedback from the ME/CFS community, while also acknowledging it may not be useful for everyone and that’s completely valid. We’re continuing to evolve the app and hope it becomes increasingly helpful to the wider fatigue community over time.
Click to expand...
I think the NICE guidance for ME/CFS NG206 is clear on not offering generic courses or treatments for other illnesses to people with ME/CFS because of the risks, as well as clear on exercise not to be advised or undertaken unless agreed and overseen by a physiotherapist/medic. Again, this is because it’s would cause harm to patients.

I think if you’re offering a generic fatigue app for a number of conditions or types of fatigue, you would be well advised to remove ME/CFS from the list your app covers unless it is specifically designed for ME/CFS and doesn’t contradict the NICE clinical guidance.

It’s not a matter of “if people want to use it…” I can use a Fitbit workout if I so choose, however Fitbit isn’t trying to tell me that works for or includes people with ME/CFS.

In your research phase you may want to look at how well the patient-designed and much-loved pacing tool Visible app works, and where it differs from yours.

I think you will find ME patients are highly motivated and severely physically limited as well as also limited in terms of cognitive demands including reading, typing, viewing screens, processing information and living under the constant worry of PEM.

We need less thinking, less looking, less motivating and more rest, more simplicity, more precise, ME- specific pacing. This app seems a mismatch for us.
 
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And for today's entertainment, I have been given so many contradictory bits of advice so far on the app today, my head would be spinning if I was taking it seriously.

It's managed to recognise that 6000 steps is not on for me, so has taken my average steps over some unspecified period, added about 100 to it, and divided it into morning afternoon and evening targets. Why it has told me to plan more than my average step count when it has also told me I'm heading for a crash and need to rest more today, I have no idea.

It asked what I'm planning to do today to help with planning. I told it 'unpack and put away two food shopping deliveries', and it allocated a ridiculous number of steps to the task, about equal to their planned total for today and told me to do it in the morning, which is interesting as it's not being delivered until the afternoon.

I went back to it an hour later, and it had lost that plan, so I typed it in again and this time it allocated me double the daily planned steps and told me to spread it over 2 days. Given that the second delivery is all frozen meals, perhaps it thinks I should leave them to melt on the doorstep.

Oh the joys of AI. It's really quite entertainingly bad.
 
Have you ever tried to assess how physically fatigued you are on a 100 point scale?
And have you ever tried to record that assessment by touching a point on a horizontal line about 4 cm long?

I'm doing that twice daily on the app at present, and it is trying to make something of the ups and downs in my random landing on anything in the 80's and 90's on the scale.

And the same for cognitive fatigue, and physical and cognitive energy.

These are all such elastic concepts that I have no idea where to place myself on the scales - compared to yesterday, compared to when well, or what?

Perhaps all that's needed is a couple of simple categories for functional capacity and symptom severity, with simple options comparing today with recent usual state, eg much or a little better, same, or a little or much worse.
 
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