FatigueSense app

Trish said:
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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Thanks for your clarification. The post I quoted seemed to suggest that there is nothing an OT could offer due to lack of evidence.

I also did not suggest at any point that pacing = recovery. However boom and bust which is what I consistently see people trying to do when they’ve had no help, does in fact seem to be worse anecdotally. I don’t see how it could possibly be ethical to leave people in that cycle when we could help them figure out how to pace, even if there’s not been any good evidence.

I’m not aware of whatever BACME is doing. I was told by the “CFS” clinic when I was pushed over to them that they don’t use the term “ME” due to there being no evidence of inflammation, so “ME” would therefore be a misnomer. I assume this sort of thing may be coming from them? CFS clinic wasn’t helpful to me at all, I only had good help from the long COVID clinic, and those OTs clearly had excellent knowledge of ME-specific fatigue.

Personally I’d love to pivot over to ME research (I’m in genetics now) because I’d really like to help find out the answer to questions like:
* does crashing make people permanently worse? Under what conditions is this more likely if so?
* does not crashing prevent worsening? Does not crashing lead to improvement? Under what conditions if so?
* what does cause worsening if not crashes?
And many more. I’m sure you are all well aware of the many barriers to getting good data in this patient population. And funding for that matter! So I’ll probably never get anywhere with this dream!
 
I agree so called 'boom and bust' as the clinics tend to call it, makes our illness worse for many of us. (I prefer the term 'push and crash', as 'boom' suggests large exertion, whereas in ME/CFS, pushing that triggers a crash can be a very slight exertion in those severely ill.)

Researching can be difficult, as it is unethical to ask pwME to repeatedly push themselves to crash for a research project. But I agree it needs researching, probably with longitudinal studies collecting data over months as pwME do their normal activities, and inevitably sometimes crash.

Theoretically, apps such as this one should be able to be used to help with research into ME/CFS, but not if it persists in treating fatigue as the core symptom of ME/CFS, and focuses symptom scoring on irrelevant psychological factors, and ignores things like OI, pain and cognitive problems and whatever else the individual experience. And not if it is based on the false premise that all fatigue is the same thing.

We have lots of discussions of genetics and ME/CFS here on the forum. I hope you'll stick around and join in.
 
Trish said:
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.
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In the 1980s and 1990s not all doctors responded well to MND (ALS), it took a lot of work to educate health services on what could be done to manage the condition in relation to feeding support, communication support, wheelchair controls and environmental controls. There were some outstanding clinicians but also here in the UK the MNDA charity did a fantastic job in raising awareness and campaigning for better services. I would agree we could do worse than seeking to emulate service MND provision for people with ME/CFS.
 
Cornelli said:
Personally I’d love to pivot over to ME research (I’m in genetics now) because I’d really like to help find out the answer to questions like:
* does crashing make people permanently worse? Under what conditions is this more likely if so?
* does not crashing prevent worsening? Does not crashing lead to improvement? Under what conditions if so?
* what does cause worsening if not crashes?
And many more. I’m sure you are all well aware of the many barriers to getting good data in this patient population. And funding for that matter! So I’ll probably never get anywhere with this dream!
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I hope that you do get to realise your dream as these are very important issues.
 
Cornelli said:
I don’t see how it could possibly be ethical to leave people in that cycle when we could help them figure out how to pace, even if there’s not been any good evidence.
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And even if ultimately each individual has to figure out the tactics of pacing for themselves, there is still a value in having an authority figure giving you encouragement and validation, because there are so many other external factors pushing you *not* to pace.
 
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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It isn't as simple as that. There are certain things that we accept as being reasonable to expect to be provided that do not depend on controlled trials. Things like being able to see someone who can explain to you as much as we know about what is wrong with you. Things like emptying bedpans and washing you down after a bout of fever. Things like finding the right wheelchair for you.

Seeing someone who can support in terms of saying that it is OK to take things gently and not push through falls into that framework. So being seen regularly by someone like an OT or specialist nurse who can provide that support and confidence in self-management makes a lot of sense. And if you read the fact sheets I have contributed to, that is what I have recommended.

I was interested to know what advice had been given, though. I was also pointing out that we don't actually know what advice is helpful beyond the first sentence in the paragraph above. The reason for being pciky about this is that I hear of complicated sets of instructions being given to people that may actually be counterproductive. One way in which they can be counterproductive is in causing division of opinion when things are not going well and more intensive support is required from hospital based specialists. People get told about anaerobic thresholds and critical cerebral perfusion and all sorts of things like that, which have no evidence base.

But above all I was just interested to know, because if we could identify a more detailed set of advice points they could be incorporated into fact sheets.
 
MrMagoo said:
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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Yeah that's probably the part that would have made a difference for me. I never managed this, and I never encountered this advice. But I can hardly see health care professionals holding up this position long term. The main goal of health care for working age people is to get us to keep on working, and for this they avoid sick leave and support because it's what they're advised to do. There is almost always a point at which they think "OK this has gone on long enough, you should be able to get back to it now", because if they don't they will face pressure from their bosses.

It's so maddening how we have known more than enough to manage this for decades. In fact this was largely the starting point of Wessely creeping into our lives, how he was mad at this correct advice becoming standard. Not that I put all that much blame on him, if it hadn't been him it probably would have been some other group who would have made it their life's goals to ruin our lives. Humans gonna human.
 
It’s the fundamental misunderstanding of pacing again.

Some (cough, BACME) seem to want it to move into “pacing up” aka doing much more.

Some seem to leave the lingering “and you will be recovered”implication hanging in the air, unspoken but sort-of implied.

It carries a sense of “if you just do it right, things will be better” which can turn into “the reason things aren’t going well is because you’re not doing it right”.

In my view, all that kind of stuff comes from a place of “default healthy, adapt for less able” it’s normal people trying to imagine what would help.

I think what pacing actually looks like is “person was healthy previously, suddenly not healthy, massively motivated to return to healthy and engage in life, likely to always push too hard due to motivations and encouragement (emotional, societal, financial, medical pressures) and needs help to do less, accept doing less, and deal with the consequences of that”

TLDR - people think pacing is a panacea/cure/motivational tool when it should be enforced and validated rest
 
I think I've pretty much reached the end of the road with this app. Everything about it makes it inappropriate and harmful for people with ME/CFS.

I think it's a clear demonstration that you can't tweak and apply to sick people what was presumably originally designed as a fitness app for physically healthy people who use the term 'fatigue' to describe the effects of overwork, stress, being unfit, not getting enough sleep, being a bit depressed and so on.

'Fatigue' when used as a term to describe an aspect of some physical diseases is a completely different thing from physically healthy fatigue, and can't be fixed by the same methods of getting more sleep, relaxing, getting more exercise and so on. It's not a lifestyle problem, it's symptom of illness. In the case of ME/CFS it's not, for many of us, the most disabling symptom.

I filled in the app this morning again and was struck by how every word and every prediction, plan, advice, comment on it is so utterly wrong for ME/CFS.

In the hope that you are still following this thread, @nanay, I will atttempt to spell some of them out in my next post. After that, I'm going to delete the app from my phone. I have wasted too much time on it already.
 
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'Smart day planner'
I filled in some planned activities for today. None of them required more than a few steps and only one lasting about 5 minutes required me to get out of bed and sit on a stool in my kitchen. The other two activities I listed are to do with interacting on this forum which I estimated at about 2 hours. It told me all of them exceeded my limits, presumably on the basis of cognitive effort which I find much less problematic than physical effort. It has never asked me about cognitive pacing and has no way of measuring it, so why it thinks it can tell me how much cognitive effort to do I have no idea.

Again each activity had a trite little comment like
'washing dishes can be a good way to move around'. Well wow, I never knew that....

My 'Activity budget' for today is
1155 steps, 15 active minutes with numbers of each listed for morning afternoon and evening.
That is close to the highest step count recorded over my last 22 days using the app, which range from about 400 to 1200

Yet it also tells me pacing carefully is especially important today because of a pattern it has spotted in the days I reported energy crashes and my step count. To be honest my reporting of 'energy crashes', whatever they are (different from PEM apparently), has been pretty random, since the concept is meaningless to me as they describe it. My energy depletes and fatigue increases every time I get out of bed and do stuff, so multiple times a day. There's no way I am going to go to the app and report a crash every time i get out of bed or spend to long lying her typing.

It's telling me at 11.30am that I have used 10% of my day's activity budget.

Daily planning:

For ME/CFS, plans of numbers of steps are not appropriate, except possibly as a guide to a ballpark maximum based on past experience. I can get that directly from my fitbit, I don't need an app to interpret it for me, let alone being precise to the nearest step. So my general guide to myself at present is to try to keep my steps below 1000 on days when I can't avoid it like shower days, below 700 on most days, and much lower, with no lower limit on bad days.

An app that seems to randomly bounce the 'plan' up and down and still plans over 1000 on days it's telling me to be careful is harmful. It pushes me to push myself. Especially if it accompanies it with little homilies about the benefits of going for a walk, showering or washing dishes. Or it would if I took any notice. It can also leave the person feeling a failure or that they are doing something wrong if a shower leaves them shattered with exhaustion, pain and nausea and lying in bed for hours after a shower instead of being 'refreshed'.

Oh, and just to confuse the picture more, it tells me both that
'The planned activities fit well within your activity budget'
and for each activity it flags with a warning:
'This likely exceeds your remaining budget today...'
 
One option on the home page is 'What matters most this week?'
The options for me to choose from are:
Energy for work
Social life
Exercise
Managing pain
Better sleep.

My reaction to the first 3 items on the list is sarcastic and unprintable. It's like telling a nearly bedridden person to 'get a life'. How wildly inappropriate.
I'll try selecting the last 2 to see what happens.

Nope. I tapped on Managing pain, and the whole section vanished from the page.

Oh, no there's a little bit tucked between two other boxes saying
This week's focus is managing pain.
I thnk that was there already.
 
Going to the Insights page:

'Today's action plan:
Focus on rest and avoid strenuous activities today
your predicted fatigue is significant and your average self reported fatigue over the last 5 days is 88 out of 100.
Limit your activity to light tasks for no more than 20 minutes at a time
your energy level has averaged 12 out of 100 recently
Shedule 3 short breaks throughout the day for at least 15 minutes each
pacing has not been helpful for you for any of the last 5 days.'

'Personalised guidance
Activity budget reduced today
Your model suggests pacing at lower intensity. Light walking is fine - avoid sustained exertion.'

My profile page:

'Health profile summary:
I've noticed that Wednesdays are particularly challenging for you, with an average fatigue level of 88, making it your hardest day. In contrast Thursdays often bring you a bit of relief. It seems you experience fatigue clustering, with some streaks reaching 28 high fatigue days, which could indicate that your pacing might benefit from adjustments to avoid boom-bust cycles. As an actionable insight consider monitoring your steps closely to stay within the optimal range of 752 to 1009 steps, which may help reduce fatigue and promote more consistent energy levels throughout the week.'

'Personal thresholds
sleep warning 5,5 h
HRV warning 18 ms
overexertion 1200 steps
HR elevated 70 bpm.'

There are other sections on this page. I won't copy them all.

My comments:
Today's action plan just parrots back to me my own input on fatigue, energy and whether the pacing advice helped, and make wildly inappropriate guesses at how long I should spend being active and resting.

The Health profile summary is AI generated nonsense. I can say more about why if anyone is interested.

The personal thresholds are based on my data but make no sense as thresholds.

OK, enough. I give up.

I will now delete the app from my phone.
 
@Jonathan Edwards Thanks for your clarification!

Happy to discuss what help I got from the OTs, although it might be best to read this fact sheet first because it might be generally covered already. It’s pretty basic - I think the 1 on 1 help is the real key. Where do I find those?
Also should I start a new thread or is it better to have a moderator take out the pacing conversation that’s already built up here and paste it over to a new thread?
 
Cornelli said:
It’s pretty basic - I think the 1 on 1 help is the real key. Where do I find those?
Also should I start a new thread or is it better to have a moderator
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I doubt we need a new thread. If it's basic then there may be nothing much to add?
I would agree that 1 on 1 makes sense, since any assumption that detailed advice could be generalised to a group seems very dubious.

Can you give the gist in a few sentences?
 
Trish said:
Thanks. I think the best thing the FatigueSense team can do for people with ME/CFS is to remove ME/CFS from the list of conditions the app is intended to support.
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From your comments, it should probably entirely remove the notion that this should be used at all by people suffering from any chronic illness. As you say, it's clearly an app developed with healthy people in mind that was kludged together to produce generic, useless-to-harmful advice in this context. It's not that it should not be recommended, it should be warned against.

Not that this is surprising, apps produced by professionals always fail for the same reasons and are worse in every way compared to apps produced by patients or healthy allies. Anyone who uses the medical consensus as a starting point can't produce something useful, because it's build on delusional nonsense and superstitions, the old "worried well" trope that can't process the simple fact that medicine still has a lot of things it doesn't understand and has a lot of work to do, which it refuses to even bother, and thus can't be useful.
 
The ethics process also should have flagged up the dishonesty* of using first-person pronouns to give the false impression that the autogenerated text is being produced by a human personality with which the user can develop some sort of relationship. These things are tools and everyone involved should be very clear that that's all they are. It's an "it", not an "I".

This is possibly even more important when you're marketing to a population who are sometimes socially isolated by their illness and may not have a good human support network.

[*edited to add: I'm sure the team developing this app don't have dishonest intentions. That makes it even more important that they stop right now and have a major rethink.]
 

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