Building an evidence base for management of severe ME (including sleep management)

That was more what I was thinking. Or that you could first assess mild-moderate patients in this way and see if/how exertion changes sleep. The effects could perhaps then be extrapolated across to severe patients, so that you only really need to rely on a FitBit for the course of the trial, instead of using sleep studies.

It's tricky because we absolutely need to include severe and very severe patients in studies, but it's obviously very hard to do that without risk of exacerbation.

 

From what I can see (from a limited google!), home sleep studies are only valid for sleep apnoea e.g.

So I'm not convinced they'd be of use. But there may well be other technology that would be. There are apps, right?

Yes, I agree, I think the issues need to be ironed out with moderate patients first.

FitBit-type things could be helpful, but I'd be concerned about floor effects especially for the bedbound. So a very severe patient could get worse (e.g. feel more symptomatic, be able for less cognitively) but their physical activity level could remain the same as far as a FitBit is concerned.

What I can't figure out is how to measure cognitive activity level or discomfort from stimulation without resorting to questionnaires?

Agreed. I'm just not keen on including them before we have a clue what we're doing, or even what is worth measuring.

 

I don't think there is necessarily any need to analyse sleep phases using EEG etc. Recent work seems to suggest that the traditional sleep levels by EEG are not that useful and that sleep states are much more complex.

I am pretty sure that either a video camera or perhaps more acceptably a movement sensor in a mattress is all the is really needed to analyse how long people are asleep and whether continuously or broken up.

 

I agree with that about the complexity of sleep states. In the first ten years of illness I could sleep unbroken for ten or twelve hours and feel that it was entirely dreamless. Now I sometimes wake repeatedly feeling I have been dreaming for hours. The afternoon PEM sleep, when you fall asleep having no intention of doing so, is something different still. But I have no idea how one could assess this.

 

My guess would be that this sort of problem could be reasonably easily dealt with either by souping up the analysis software or back-checking with reality as you have done. The camera would be able to tell you were on the sofa rather than in bed!

 

There are too many posts in this thread for me to follow so sorry if this has been said.

I recently read "Why We Sleep; The New Science of Sleep and Dreams" by Matthew Walker. I was very impressed by his work which is all done in a proper sleep lab. It makes sense that sleep is a dynamic essential process since it is highly conserved by evolution - one of those ideas that, when it is pointed out, seems obvious.

If sleep is so dynamic it follows that it can go wrong but this can only be disentangled in a proper sleep lab with experts. I would love to see a study done on, even a small, group of ME patients.

When I read the book I wondered if it would be possible to get Matthew Walker interested in us.

 

Sleep is certainly complex but I am not convinced there is any great value in studying changes in different sleep levels in ME as an index of whether or not a plan for self-management is helpful. That would only make sense if we knew the importance of specific sleep states to health in the specific context of ME - which you would have to judge with other measures of health as the gold standard anyway. Research of that sort would be interesting but it seems to be putting the cart before the horse in terms of working out what allows people to be at their best long term.

When I mentioned sleep plans to start with it was not my intention that sleep patterns should be used as outcome measures. The main outcome measure would be managing during the day.

 

Also read that good and interesting book. I found it particularly pedagogical and easy to read, but very convincing. A good start for anyone interested reading about sleep and science.

It is of no surprise, but the importance of sleep on all kind of health issues are huge. For patients not experiencing restorative sleep a quite scary book. One thing is living the consequences of non-restorative sleep day to day, and then also the quite significant risk of other unpleasant things. But absolutely worth reading in portions over a long period of time.

 

The FitBit couldn't do this alone. But it's an example of where you might compare subjective and objective measures. If patients report worse symptoms and worse sleep, and the FitBit shows, for instance, worse heart-rate, broken sleep and a lack of deep sleep, then those things potentially match up.

It also means we'd get a bit of an idea of how we can measure symptom changes in patients who can't speak (e.g., if poor/broken sleep and/or high heart-rate turns out to be a good proxy for PEM). Of course, there are confounding issues (sleep might be more broken in severe patients in the first place), but we don't know until we test things.

 

Same here with my Garmin Vivosmart 3. A bit disappointing.

 

I use a Fitbit and also a tracker on my phone. Two sources. I question the accuracy of both, but as long as I match data with myself, it is a valid and good source, at least for movement. As a start I think patients can give good subjective reports/testimonies/descriptions of disease, development and such. But unfortunately “patients testimonies” are worth little. Should not be like that, but backed by hard objective data you increase the value quite a bit.

As a general advice I think patients in earlier stages where there still is the dynamics of “little better after appropriate rest” ,can learn quite a bit from trackers. You can learn and adjust, you could probably learn something from patterns over a longer period of time. That said, it won’t necessarily be easy to make adjustments.

When severe I don’t know if I actually can use the information for much now, but can definitely back up subjective description by data. Unsure if that is worth anything?

 

Since they added REM sleep detection the Garmin software has a known issue with 'deep' sleep, it's poor at determining it.

This throws everything else off.

As to sleep duration it gets it wrong occasionally, the other night it decided I had over 10 hours sleep when in fact I got 4 and a bit hours. The rest of the time I was resting/dozing on the sofa, but not asleep asleep.

It's a fitness tracker with some sleep monitoring, not a professional sleep monitor.

It's a guide only, it shows trends more than hard numbers.

The same as with everything else it monitors.

Given that I at least am looking for patterns, clues as to what's going on, the absolute numbers don't really matter, just the indication that something 'unusual' is occuring.

QUite a lot of 'unusual' things seem to occur, but just as interesting is what it doesn't pick up.

Such as this morning I feel terrible, but according to it I'm absolutely fine, better than fine, zero stress, HR in the low 60s, HR is not over reactive, only rising to mid 70s on standing - it's just not seeing anything that correlates to how I'm feeling.

Are they useful? Yes, to a point. Are the metrics solid, reliable, evidence? Most certainly not.

 

Frankly, I fail to see why or how the use of inaccurate devices to measure something which has no effect on the underlying disease process could be of benefit, other than to tell us what we already know. I'm in that sort of a mood today.

 

Hear you. I agree, except from the mild ones, I don’t know who they are longer, but been there many years ago.

ME is, - like if I only knew now what I should have known from the start. It is a horrible insight, that you paradoxically wrecked prognosis due to staying positive and maintaining (push-crash) and never getting any good advice, the absolute contrary.

But: I think milder patients early on could make some proper adjustments with some sort of device, learning when exceeding limits and then try to avoid. Not that it helps anything, but just to avoid as much harm as possible. The thing that ruined us all is the push-crash over and over again. So much for the combination of trying and harmful advice.

 

Device type aside, I would worry about who infers what from what bits of data. Even if we could influence sleep patterns, I'm not clear we have any solid data showing it would help the majority of pwME, or even the majority of severe patients. I even am concerned about the entire sleep emphasis because this seems to harken back to the whole feeling tired schtick. Who are we managing sleep for? Whose itch are we scratching? I'm not entirely sure it's for pwME.

It's good to seek out baseline data for all things ME/CFS, but we best make sure whose frame of reference we are coming at this from.

Until we learn what mechanisms are at the root of all the malfunctioning and misery, the one hard-learned data set is pacing is the safest approach, the best not to inflict further harm - regardless of intentions. I have no reason to think we should not import this caveat to the severe ME community. If pacing is only marginally relevant, then perhaps - as many have suggested here - management aid should be focused on helping meet basic needs like feeding and housing etc.

Someone is going to sit in the driver seat and do a lot of inferencing to craft management guidelines, and as siloed as medicine has become, we don't have many people trained to infer globally.

I hope this does not come across as nihilistic; I just prefer caution since the only principal that seems to have moved us forward in any meaningful way is the best way to learn is the hard way. Whoever does try to secure this baseline set will need to...should strive to... divest themselves of ingrained assumptions, and who can do that? I can think of more than one entire medical field that has failed at both shedding bias and making accurate inferences - and their failures were/are catastrophic for tens of thousands of the sick.

 

Yes, so much this... I never would have made it through university without a lot of sleep. Non-patients just don't seem to understand how hard it is - you don't have any energy to focus on anything other than eat, sleep, and sometimes even just one Uni subject at a time. Everything else falls by the wayside.

Limiting sleep means limiting energy to do anything useful. I mean I can stay up for 16 hours a day without napping, but my productivity drops to zero.

I don't really see the point of more sleep studies, given that many have been done already.

 

Except that as far as I know there are no studies comparing impact of advised sleep plans - if only to show that 'sleep hygiene' should be removed from guidelines.

 

I'm not sure this is necessary? There is a common underlying physiopathology in mild, moderate and severe.

 

But is there? We don't know that. We don't even know what the physiopathology is.

The Biobank hand-grip strength test paper showed that the different severities were almost different illness. The results were distinctly different.

How can we ensure a treatment is safe for severe patients if that's never safely tested?