The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Project proposal for a dedicated ME wearable device

Discussion in 'General ME/CFS Discussion' started by bananabas, Jan 29, 2017.

  1. bananabas

    bananabas Senior Member

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    I recently got in touch with a health-oriented dutch startup. Among other things, they manufacture wearable sensors that can detect motion and (in the next version) also record an electrocardiogram. Something like fitbit, except everything is open source and can be custom engineered for our needs from the ground up. What do you think? Is this something worth pursuing? Any concrete ideas on how we can make this useful? Perhaps the heart rate or its variability can be correlated to over exertion/crashes? What do you think, @anciendaze? I seem to recall a conversation where you mentioned fractal measures in cardiology.

    Their website is:
    http://openhealth.wemaketotem.org
     
  2. anciendaze

    anciendaze Senior Member

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    @bananabas,

    I haven't heard of this before. A previous effort I'm still waiting to hear results from was Angel Sensor. There is an app for it, and there is source on github, but my contact who ordered a device has not gotten back to me.

    From my own experience with high-tech startups I have to tell people that the stress in these is unbelievable, and that there are many with wildly inflated claims which end up as scams, assuming they did not start that way. Medical technology has long been a field in which bizarre devices and extreme claims have flourished outside the mainstream, while inside the mainstream it seems that nothing can be done in less than a lifetime. You need to investigate the people involved and make your decisions based on their characteristics. Are they truly knowledgeable? Do they have the means of checking themselves, their theories and their results for errors? Have they succumbed to hype?

    My personal problem is that I know I am not in shape to compete in that field, even if I were younger. To really make a difference, or even to properly evaluate what others are doing, I would have to have exceptional stamina -- in which case I would not need the technology.

    On the subject of fractal measures in cardiology there are already many devices, albeit expensive ones, which will collect data reliably. The big problem is getting medical doctors to evaluate this in a different way than they commonly do, which amounts to waiting until the heart is actually damaged. If the problem is not specifically in the heart, but in the autonomic nervous system most medical doctors will ignore anything they don't want to see, even attributing syncope to psychosomatic causes. (Vasovagal syncope is not some new phenomenon.) There is potential for much cheaper devices to provide reliable longterm data, but this kind of development is not easy, in part because so much prior work has been done.

    I was once asked about a case in which a patient seemed to be having something like seizures producing weakness, anxiety and confusion. No seizure activity showed up on a short EEG. My suggestion was to make sure they had ruled out episodes of atrial fibrillation with longer-term data taken with a Holter monitor.

    There are even devices that take blood pressure around the clock, though these are much rarer. It would be handy to have a portable EEG device that makes continuous recordings. It would make sense to check on what the heart is doing while the brain is showing signs of misbehavior. Brains don't work well if short of oxygenated blood.

    What bothers me is that this kind of thinking was novel to the doctors I was talking to. "We don't normally measure things that way." If you wait until there is persistent damage to a specific organ it is likely to be very hard to reverse. Prescribing drugs for symptomatic relief is likely to further delay recognition of an underlying physiological problem.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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  4. anciendaze

    anciendaze Senior Member

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    Thanks Sushi, that one is new to me. However, in addition to ECG/EKG devices I was talking about EEGs, electroencephalographs. It would be very good to know if a patient's problem starts with a disturbance in the brain like a seizure, or with heart irregularities or vascular spasms which then deprive the brain of oxygenated blood. It is remarkable how many doctors don't even think in these terms. When one of them gets what I'm saying there is a sort of light that comes on as they realize how defective our current diagnostic methods may be.

    I was talking with a neurologist about the possibility that the dismal progression of neurodegenerative diseases may be evidence that we aren't even looking at the real source of the problem. We agreed that localized ischemia can cause nerve damage. I then mentioned the problem of "kindling" producing more seizures. This was one simple way in which episodic localized ischemia could create serious neurological problems. He was quite thoughtful as I left.
     
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  5. Tyto alba

    Tyto alba

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    Alphabet's subsidiary Verily Life Sciences (formerly Google) has been putting in a lot of effort in this field - wristband health monitor, disease detection etc. They've just received an investment of $800 million so it will be interesting to see how they progress.
     
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  6. bananabas

    bananabas Senior Member

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    I was just reading a review about the Angel Sensor the other day, and it's not exactly positive: https://www.adventuresinoss.com/2016/02/20/review-angel-sensor-fitness-tracker/

    Apparently the people at OpenHealth just sent out a newsletter where they mention ME: "The more sensors we have, the more research projects we can start. From ME research in the Netherlands, to Autism in the USA and ADHD in Australia." So we barely exchanged emails where I let them know about ME, and now it's officially one of their projects? Not a good sign.

    As far as the medical profession is concerned, I contacted dr Frans Visser in the Netherlands for a possible collaboration, let's see if anything comes out of it.

    @Sushi and @Tyto alba I am aware that there are a number of other devices already on the market or coming soon, but none of them seem to be targeted at ME patients.

    On a final note, I have talked to a biomedical engineer and found out that reliable data aquisition using wearable devices, as well as the subsequent data analysis are hard problems that can take years to get right :|
     
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  7. Sushi

    Sushi Senior Member Albuquerque

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    Nope, none targeted at ME patients.
     
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  8. Sushi

    Sushi Senior Member Albuquerque

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    Even though none are targeted at ME patients some of them can help monitor a few symptoms that ME patients get--particularly cardiac.
     
  9. Sidney

    Sidney Senior Member

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    I have only now found this thread, and I wonder whether Ithere have been any recent developments that anyone here has heard about.
    I too have spent quite a lot of time in recent months trying to work with some of the available devices. (The money we spend, out of desperation...).

    I started with a Fitbit charge, which, when you turn it on, flashes up your heart rate ( not very accurately, as I discovered when I got a chest strap sensor), and the steps you've taken so far.

    I now use a Polar A360, more accurate, but with same drawback: there isn't a lot of point in knowing that your HR is way over your threshold just after you do something: HR will rush up if you suddenly do anything different: get out of bed, walk up some stairs, have a bad dream...
    But in my case it usually goes down again pretty quickly.
    I want to know if it's been over the threshold for, say, 10 minutes - that would alert me to a probable crash later on, and to be careful about that activity.
    No device that I have found will do this. I realise that it would need a lot more power than you can get from the battery, but it's hard to believe that some technological genius couldn't solve that.

    Fitbit though does have one advantage, in that it gives you a graph on the website, for each whole day, that shows your HR on a timeline, and you could go through your graphs marking your activity for each rise and fall of your HR. But it would be tedious, especially if it's not very accurate, and also it's not easy to print out just the graph (separated from the rest of the web page).

    Polar will tell you how far you've walked, calories used etc, after each day. But again, it is after the fact, and we are not trying to work up that kind of achievement ladder. Some days I can walk further, many days not at all.
    And anyway, steps are only one measure of energy used.

    For a week or so I wore both watches, to get the graphs and the better HR - but I felt like an idiot, and stopped.

    I use the polar H7 sensor to take HRV every morning; it is interesting, but I haven't been able to consistently relate the numbers to anything in ME. On the stress monitor ( Sweet Beat app) they do give an alert if stress is high - but that is only one consideration for ME, and it's either on or off - no degrees of stress!

    I could go into other things that I can't understand in HRV results; but the point is, these things are designed for Atheletes, and we need the opposite kind of monitoring. ( in the Elite app, which I've given up, the only thing I learnt was that, on some mornings when I felt so crashed and ill that I was desperate, it would say 'Your HRV looks good, you can train harder today'.
     
  10. Jenny TipsforME

    Jenny TipsforME Senior Member

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    My Epson ps500 will tell me heart rate and steps at the time, so I can stop myself going over on both (vibrates when changes heart rate zones, though it works this out itself, you can't adjust). The battery is a couple of days heart rate monitoring before needing charging.

    I find the app problematic and actually haven't managed to pair it with my iPad. Supposedly you can link with the ME-CFS Assistant app but I haven't even got the official app working...

    It doesn't do HRV or fancier stuff like EEG (it's a sports watch I've commandeered for health use).
     
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  11. Sidney

    Sidney Senior Member

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    Thank you, @jennytipsforME, that is interesting, that you can see, or feel, what is going on, as on a monitor - much more useful.
    However, I think I have learned one thing, which is that UK and US devices with the same name are not always identical. I was told that a Garmin watch ( can't remember the model, it was a very sophisticated one) would give me alerts when I went over the anaerobic threshold. So I bought the exact same model here in the US from Amazon, and when I couldn't figure out how to program any alerts, I telephoned Garmin, and was told that it does not have that function. So I assumed there was an export model, and returned the watch.

    Yes, pairing is a nightmare. I have to do it every week, it seems, with my Polar watch and my iPad ( that is, unless I open the "feed" every day), and it never remembers that it was done before. I wasted a lot of yesterday morning doing that.

    I haven't found anything except sports watches to commandeer for health use - but I am new to the whole concept of health devices.

    I didn't know there was a MECFS assistant app - can't wait to try it! Though I expect I'll waste at least one morning trying to master it.
     
  12. bananabas

    bananabas Senior Member

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    Unfortunately, there are no new developments. The startup that was originally involved in this project decided not to pursue it further. I'm really sorry :(
     
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  13. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Sidney I saw this morning that the MEcfs assistant app isn't allowing any new registration, I don't know why.
     
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  14. Wishful

    Wishful Senior Member

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    The problem for developing a sensor for CFS/ME is what do you measure? No one has found a definitive measurable symptom. Dr. Davis' metabolic sensor seems to be measuring something that differs between healthy and CFS/ME cells, although it's too soon to tell if that's valid. I suppose you can measure muscle movements: I know I move differently when my symptoms are severe, but I'm not sure what value that would provide.
     
  15. Sidney

    Sidney Senior Member

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    Yes, i failed when I tried it, which was the minute after I'd read your post! But thank you for mentioning it - I'd be grateful to know if it returns!
     

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