FatigueSense app

ukxmrv said:
Is there an App that allows PWME to record all their major symptoms and follow how they group together, how often they occur and what effect they have on over health or PEM etc?

I'm not thinking about a step account but for people who crash or have a functioning loss after things like bathing, going to the loo or some light folding of laundry etc. It may be a daily amalgation of all these things.
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There is a free app called Bearable which allows you to edit symptoms to suit yourself, and will generate reports from your records.

Visible will do this too, pulls things into a graph by symptom or compare two symptoms over a time period. It’s not great at downloading info, you need to CSV dump everything.

Visible does real-time monitoring so you would have heart rate, you can take what you wee doing and then see how that affects you if you keep up the tagging and looking at if you stayed within the energy points.
 
wabi-sabi said:
Visible does sort of do this- you can choose which symptoms to track on a daily basis- very simply- and then see how they interact together on the trends over time screen. There's a limit to how much you can compare on trends- only two things at once. I'm not sure if that's a limitation or a nice way of making things simpler.
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They did have a kind of report which got pulled shortly after its launch, I wish they would bring it back. The usual monthly report is always the same for me, top 5 symptoms don't change much.
 
Hey all, I was googling to try to find the Fatigue sense webinar that happened last week, but came across this discussion instead so thought I’d pop in. I’m also beta testing the app and just got through the calibration period and started getting recommendations. Mine seems a bit different from Trish’s. This might be due to use using different wearables - mine is an older Garmin that had body battery but doesn’t explicitly have HRV, so the app is not pulling any HRV info. Also the app has a lot of stuff in the interface so I might just not be finding the same things.

Anyway it has give me accurate step count recommendations that are within my usual range (it recommended 860 or so today, my average is 1100ish). It also gave me a warning to watch out for signs of PEM yesterday because i walked 1250 steps the previous day. That level is safe for me but it did seem like possibly the app understands that a deviation like that can be dangerous for some.

One bonkers thing though is that it keeps telling me that my pacing has not been working, and I can’t figure out how it has come to this conclusion. My pacing is working really well. I haven’t crashed in three years. that is the point of ME pacing. ‘M not sure if it thinks I should be gaining energy from pacing? It offers a button to chat with the app so I clicked on that to ask this, but it just took me to another page crowded with boxes and I didn’t see a chat function.

Apologies for any typos, I cannot see while I am typing because it scrolls my text box up off the screen as I type for some reason.
 
Cornelli said:
That level is safe for me but it did seem like possibly the app understands that a deviation like that can be dangerous for some.
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Apps do not understand anything!
Even those who have been following the science on this for years have no hard evidence to go on.
I think trying to make apps that can help people in this way is seriously naive and potentially a cause of much misery. It is just as bad as the fairy tales of the BPS people.
 
Welcome, @Cornelli. Do you mind me asking whether you have ME/CFS? And does the app tell you anything you find helpful that you couldn't have worked out for yourself with your wearable and experience?

There is an update to the app which I downloaded yesterday. It's a bit better in not having such a crowded home page, but still pretty confusing about how to navigate the way through it, and still giving me contradictory information. It's true that some bits are getting things sort of right, like noticing I did more steps than usual yesterday and warning me to be careful today, yet it still set me an above average for me step plan for today. I always say my fatigue is severe and my energy very low, yet it persists in predicting moderate fatigue each day.

The planning your pacing on the basis of a planned activity you enter is presumably AI generated and has clearly not been given any instructions about how to advise specifically for ME/CFS, and what sort of comments are appropriate.

Latest examples of crassly inappropriate commenting:

Yesterday I filled it in saying I planned to have a shower an wash my hair.
Here's what it said:

"The planned activity fits well within your energy budget.
200 steps, 10 mins, 10 points
morning
A refreshing shower can help you feel energised and ready for the day."

The reality:
For me this is the most demanding activity I do and I can only manage it on a good day, only about once a week, and need to rest for the rest of the day. It drains all my energy and is the opposite of energising. It uses more than 100% of my safe exertion limit.

This is wellness drivel, not helpful feedback.

Today I need to rest more physically because of the shower yesterday, and said my plan was some online activity (shopping and forum). It made no comment about cognitive exertion being important to watch, and said some drivel:

"Enjoy the convenience of ordering from home!"

Again insensitively inappropriate. If we couldn't order our food to be delivered and, when possible time it to be delivered when our cleaner is here so she can unpack it and put it away for us, we would have no food. It's not a convenience it's a necessity. Neither my daughter nor I is well enough to have the option of going to a shop, even with wheelchair and helper. We do all our shopping online out of necessity.
 
Does anyone know how they are calculating your “points” allowance and or usage?

I know how visible do theirs, and I know it’s based on the Workwell paper (fairly scant scientific basis but in their defence they don’t claim that it’s perfect, and you should reduce or increase the daily level based on your experiences)
 
Worth comparing with an example of an app developed for personal reasons, by a LC patient's husband, and where priorities and choices differ. User experience is often where apps like this fail, because they don't really consider the user, rather everything is designed by the provider for the provider's intended use. There's just something about projects like this that make them fall apart when developed by/with professionals. IMO this is why Visible is such a clearly better choice, although the question remains about the usefulness of so many apps with the same goals.

 
This Fatigue App sounds like it’s suffering from the same problems as the Elaros one - it’s a database with lots of “added value” extras. Only problem being the “added value” is internet trash info /AI slop which is cheap, ineffective, useless and annoying to users.

Compare to user generated ones like the French app above and visible. They just record data and give warnings, plus have user-friendly features which genuinely add value (charts/reports/dark mode).
 
@Trish yes I have ME/CFS. No I don’t think the app has been helpful for me at all. The reason I offered to try the beta is that I am well in control of my pacing and have an interest in how to help other people figure it out, and wondered if the app has an interesting approach to this. In my view - no, it doesn’t at this time.

I’m of two minds about the thing entirely. On one hand, telling people at risk of PEM to do “xyz” activity, ever, is actually pretty dangerous. To leave such instructions in the hands of AI is even more so. I’m not sure a detailed app could handle both people with PEM and people with non-ME types of fatigue, although a vague app like the free version of Visible is ok because it doesn’t really advise you, just helps you track.

On the other hand, my feeling from being around the forums on Reddit for a few years is that people have almighty struggles with pacing, and there is no professional one-on-one training available to them. It was to me, only because I happened to come through the system via “long COVID” and was very severe at the time so qualified to have two occupational therapists personally advise me for months. If there could be an app that could provide what they provided, it would be such a boon to people who have no access to pacing help. That app wouldn’t be anything like this one though - it’s clearly not meant to teach pacing but just to hoover up some data on what you’ve been doing and rearrange it on your plate, I guess. I know there is loads of info on pacing all over the internet, and loads of books on it, but so many people really just need personalised help.
 
Cornelli said:
It was to me, only because I happened to come through the system via “long COVID” and was very severe at the time so qualified to have two occupational therapists personally advise me for months. If there could be an app that could provide what they provided, it would be such a boon to people who have no access to pacing help.
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I wonder how these occupational therapists knew what to advise, since we have no evidence base for what to advise? I can see the value in having supportive people around but there is no way of knowing, as far as I can see, that advice from therapists is actually what helps recovery in any particular case. You don't have a control observation of what would have happened otherwise.

i wonder what they advised?
 
Cornelli said:
On the other hand, my feeling from being around the forums on Reddit for a few years is that people have almighty struggles with pacing, and there is no professional one-on-one training available to them.
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What kinds of struggles?

The most challenging part for me was to understand and accept how little I could do, and then get the people I live with to also understand and accept it.

The other common struggle I’ve observed is simply that your current life is way beyond your current abilities, and creating a different life requires a lot or changes with various practical difficulties and in some cases seemingly impossibilities.

Other than that pacing isn’t difficult per se. It’s just planning, so it’s exhausting and tedious.
 
The OT assigned to me for 1:1 sessions had idiotic advice that if I had listened would've led not only to crashes but also injuries from fainting. When I crashed, it was my fault because I did too much. If I didn't crash, I was doing too little according to her. It got ridiculous to the point that I actually asked her what was I supposed to do that would satisfy her.

One of the issues is that the medical professionals I've interacted with often presented pacing as a magical way out. You learn how to pace, you stop crashing, you get better. If I weren't interacting with other patients, I would've thought I was the only one still crashing years later whilst everyone else had mastered pacing, and blaming myself for not pacing well enough and making myself worse.
 
Trish said:
Welcome, @Cornelli. Do you mind me asking whether you have ME/CFS? And does the app tell you anything you find helpful that you couldn't have worked out for yourself with your wearable and experience?

There is an update to the app which I downloaded yesterday. It's a bit better in not having such a crowded home page, but still pretty confusing about how to navigate the way through it, and still giving me contradictory information. It's true that some bits are getting things sort of right, like noticing I did more steps than usual yesterday and warning me to be careful today, yet it still set me an above average for me step plan for today. I always say my fatigue is severe and my energy very low, yet it persists in predicting moderate fatigue each day.

The planning your pacing on the basis of a planned activity you enter is presumably AI generated and has clearly not been given any instructions about how to advise specifically for ME/CFS, and what sort of comments are appropriate.

Latest examples of crassly inappropriate commenting:

Yesterday I filled it in saying I planned to have a shower an wash my hair.
Here's what it said:

"The planned activity fits well within your energy budget.
200 steps, 10 mins, 10 points
morning
A refreshing shower can help you feel energised and ready for the day."

The reality:
For me this is the most demanding activity I do and I can only manage it on a good day, only about once a week, and need to rest for the rest of the day. It drains all my energy and is the opposite of energising. It uses more than 100% of my safe exertion limit.

This is wellness drivel, not helpful feedback.

Today I need to rest more physically because of the shower yesterday, and said my plan was some online activity (shopping and forum). It made no comment about cognitive exertion being important to watch, and said some drivel:

"Enjoy the convenience of ordering from home!"

Again insensitively inappropriate. If we couldn't order our food to be delivered and, when possible time it to be delivered when our cleaner is here so she can unpack it and put it away for us, we would have no food. It's not a convenience it's a necessity. Neither my daughter nor I is well enough to have the option of going to a shop, even with wheelchair and helper. We do all our shopping online out of necessity.
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OMG, @Trish, that app feedback is ridiculous! If a shower would make you feel energised, wouldn't you do it everyday???
 
That’s interesting @Cornelli I would be interested in hearing a positive experience of learning to pace via an OT

I do think a massive part of “learning to pace” is just learning you have to let go; it’s not fair; no you can’t do that any more; no that isn’t worth the inevitable crash.
Otherwise, wouldn’t we all just sit down for five minutes every ten minutes, do some breathing, eat a balanced nourishing meal (prepared over several days batch cooking) and then we’d be done, right? Nailed it. Pacing completed. It’s not rocket science. You don’t need an advanced education to understand what it is and how to do it.
 
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MrMagoo said:
I do think a massive part of “learning to pace” is just learning you have to let go; it’s not fair; no you can’t do that any more; no that isn’t worth the inevitable crash.
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Yes, it's the emotional part of learning to pace that's very hard-realizing how limited your life has become and being at peace with it is an ongoing problem. Also deciding which things are worth the crash if you really have to. An learning not to blame yourself when you do crash despite doing everything you could.
 
Jonathan Edwards said:
I wonder how these occupational therapists knew what to advise, since we have no evidence base for what to advise? I can see the value in having supportive people around but there is no way of knowing, as far as I can see, that advice from therapists is actually what helps recovery in any particular case. You don't have a control observation of what would have happened otherwise.

i wonder what they advised?
Click to expand...

I guess this topic is supposed to move elsewhere, but there is no evidence base for ANYTHING with ME, therefore I am curious as to what you would like evidence-based systems such as the NHS to offer in terms of CFS? Because if we can only accept what there has been Extremely Good Solid Published Peer Reviewed Double Blinded Evidence on, and the NHS requires high quality evidence to develop the NICE guidelines, which clinicians cannot deviate from, then I should not have been allowed to be helped with pacing. And there should actually be no clinics for ME, and no advice at all.
 
Cornelli said:
I guess this topic is supposed to move elsewhere, but there is no evidence base for ANYTHING with ME, therefore I am curious as to what you would like evidence-based systems such as the NHS to offer in terms of CFS? Because if we can only accept what there has been Extremely Good Solid Published Peer Reviewed Double Blinded Evidence on, and the NHS requires high quality evidence to develop the NICE guidelines, which clinicians cannot deviate from, then I should not have been allowed to be helped with pacing. And there should actually be no clinics for ME, and no advice at all.
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There being no effective treatments that lead to improvement or recovery for a disease doesn't mean sufferers should be either neglected or offered unevidenced treatments.

There are other disease as well as ME/CFS, such as motor neurone disease, that have no effective treatments, but patients with MND are not turned away by doctors and the NHS, they are provided with advice and supportive care according to their needs.

The same should apply for ME/CFS. That can include help with learning to pace for those who are struggling and want help, as well as symptomatic treatments for pain, sleep, nausea, whatever can be helped.

The problem in the UK is that a lot of the ME/CFS clinics follow the unevidenced BACME model with false explanations of the biology and false hopes of improvement by pacing up. If a good OT really understands how to help with pacing, that's good.
 
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