The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Dissertation: Looking for ideas

Discussion in 'General ME/CFS Discussion' started by tabbyjod, Feb 10, 2017.

  1. tabbyjod

    tabbyjod

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    Hi All,
    I am 23 years old and was diagnosed with ME/CFS/Fibro when I was 15. Over the years I have got a 'little' better, perhaps more with management of the condition than anything else.

    I am currently undertaking a computer science masters course (struggling greatly with my health but trying to get through it!) and I am about to start my dissertation. I've decided I want to do something, however small, to help chronic condition suffers and thats where I need your help. Do any of you have any ideas of day-to-day applications, or wearable devices, that would help you manage your condition? The point is less to find a 'cure' than self management of the condition itself- I know personally I really struggle with getting to doctors appointments etc as it is so exhausting. It could be related to problems you find in every day life (like travelling/ making meals/ stress).

    An example would be using the spoon theory (give it a google if you aren't familiar!) whereby I would create a wristband device to record energy consumption, every half hour activity would illuminate a red light and once the wristband was fully lit that would be a signal to rest for the day so you do not overdo it and suffer payback over the forthcoming days.

    I would love to hear any ideas you have, and anything you really struggle with regarding the condition (this could be triggers or certain activity) which I could then cater my dissertation research towards. Perhaps you have found ways of dealing with the condition that could be translated to a technology platform?

    Thanks for your help- I'm hoping once I get started some of you might be interested in answering further questionnaires for me and maybe trailing a product/app (I will make sure nothing is too challanging- I think it helps that i have first hand experience of the condition so have an idea of what we can manage!)

    Tabby
    X
     
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  2. Quemist

    Quemist

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    I really like your idea for spoon theory and reminders to rest-- I would use that!
     
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  3. MastBCrazy

    MastBCrazy

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    Pacing can take people a long time to master, so a tool that helps train people, could be a very helpful product. A pacing companion.
    In terms of quanitfying, I find that for physically induced PEM, PEM=f(heart rate/intensity, duration of intensity, spacing between exertions, ability to minimize exertion/intensity when resting). Add symptoms tracking and it might be possible to apply a neural network for the user that better estimated the amount of 'gas in the tank' or could coach how to divide up tasks.
     
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  4. Sasha

    Sasha Fine, thank you

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    Hi @tabbyjod, and welcome to the forums. :)

    I'm sorry you got this horrible illness when you were so young and I'm glad you've had some improvement. It's great that you're thinking of a project to help everybody!

    You've got some great ideas there. You might want to look back through Cort Johnson's Health Rising blogs because he covers the topic, now and again, of how various existing devices can be exploited by PWME for management (and you might also find useful insights in the comments sections for those particular posts). I wish I could remember specific posts, but I can't! But his site has a search function, which might help. He also might have some ideas himself, if you contact him, given that he's written about it.

    It might also be worth contacting Dr Nancy Klimas, whose treatment partly involves telling people to stay under their aerobic threshold as much as possible, and asking her what she thinks might be helpful. Based on what she does, I've wanted a heart-rate monitor that doesn't involve a chest strap (too uncomfortable to wear all day) and has a simple way of triggering an unobtrusive alarm (like a vibrating wristband) when you go over your limit. The commercially available devices are all aimed at healthy people trying to improve their fitness for the short periods when they're running or at the gym, and they're incredibly complicated to programme just to get that alarm for an HR upper limit - as a brainfogged PWME, I found them impossible.

    Good luck! :thumbsup:
     
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  5. ryan31337

    ryan31337 Senior Member

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    Hi @tabbyjod,

    It's great that you've got the freedom to follow your own interests for your dissertation, it should be a lot of fun! I followed a similar path and was several years into a comp sci/engineering PhD when I relapsed and had to stop... though hopefully I'll be well enough to return soon. I spent a lot of time playing with physiology monitoring and novel human machine interfaces in my research...

    Regarding physical activity tracking: for myself (and many others here), physical activity is only one part of the problem. I can sit motionless at my desk just engaging my brain for longer than I should and still feel ruined the next day. The cognitive burden should really feature. I did some work with eye focus tracking which could potentially help measure that, a colleague also played with EEG devices to measure cognitive capacity... neither of these were particularly ambulatory but if you're allowed to look at your dissertation as a research project rather than product design it could be interesting?

    Another important thing to consider in ME/CFS activity tracking is posture. I don't know how aware you are of Orthostatic Intolerance (I had it for almost 20 years before an informed doctor recognised it) but it is very, very common in ME/CFS patients in various forms (POTS, NMH etc.). Posture can make a very big impact on our ability to tolerate exertion, both physical & cognitive, e.g. I can exert far more without payback when horizontal in a swimming pool than I ever could upright on land. I think it would be very interesting to weight your activity ratings dependent on posture, which I guess you could measure with a simple gyro? Perhaps something mounted above the knee should be able to identify standing vs sitting/supine. Just a thought.

    Heart Rate Variability from an ECG chest strap is also another possible avenue to explore - there are existing products and apps that do this well and from my own limited testing it could often predict a PEM day before it actually hit.

    Do you have the ability to produce hardware prototypes and work at lower levels, or are you aiming more towards software apps only?

    Hope some of that helps!
    Ryan
     
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  6. tabbyjod

    tabbyjod

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    Thank you for that, after talking to people with the condition is is becoming apparent that estimating their daily capabilities is a key issue and one i should consider including
     
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  7. tabbyjod

    tabbyjod

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    Thank you- I was not aware of Cort Johnson's blog but will be taking a look now! I like the idea of a vibration warning too, I find looking at a phone screen when I am at a bad point is difficult so being alerted using a different method is a good idea.
     
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  8. tabbyjod

    tabbyjod

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    This is brilliant thank you Ryan, I'm sorry you had to stop your research because sounds really interesting- hopefully you will be able to continue it soon! I am allowed to do a research project- do you have any links to the research you talk about regarding the cognitive side of CFS/ME? I had not considered posture, although I am aware of its significance, so that is certainly another area I will consider researching. It would also be a useful feature to incorporate into a design. The heart rate monitoring side of apps has appeared a lot in discussions with individuals with the condition, so this is also an important angle to explore. I am not sure how possible hardware is, or whether i am only capable of software. I would like to create a device of some sort, but I am still in the initial stages of the project and am not aware of the dissertation limitations this point- its something I am going to discuss with my supervisor next week!
    Thanks again
    Tabby
     
  9. Sasha

    Sasha Fine, thank you

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    I agree with @ryan31337 - a lot of us have OI, and being able to track how long we're vertical for would be great (in judging whether we're improving overall, since the two seem to be related, and whether any OI treatments are actually working).
     
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  10. Sasha

    Sasha Fine, thank you

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    It's also a question of not being embarrassed in public! It's one thing to have a beeper go off when you're a healthy person in the gym or out running but quite another when you're a PWME in a shop or a cafe who's (apparently) doing nothing. :)
     
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  11. NelliePledge

    NelliePledge plodder

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    Last edited: Feb 12, 2017
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  12. Dechi

    Dechi Senior Member

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    Hello and what a great project ! I often wish there was a universal application where I could gather all my data and have nice charts and statistics automatically. Charts that would mean something for someone with ME. For example, I use My fitness Pal for my calorie intake, polar flow with my smart watch, Elite HRV for my heart variability, another app for my blood pressure. There is no connector between these applications, except maybe partially. So I accumulate my data on an excel spreadsheet and manually do some charting.

    I also keep track of my symptoms in a notebook, separately. They are not linked with anything, so I have to try and remember if they coincide with any other data.
     
  13. ryan31337

    ryan31337 Senior Member

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    Hi Tabby,
    Sorry I wasn't very clear, the research we did was not medical in nature, it was actually studying cognitive workload in automotive/military environments. But I figured some of the techniques could be applicable. I'm not sure if my colleague has published anything yet but I'll drop her an email and PM you if I get anything back.

    Definitely, that's where the fun is if you ask me! I love prototyping stuff and there are some really good little embedded platforms out there now with pre-made sensors and comms, targeted at enthusiasts so very easy to learn. Gone are the days of having to write low-level code or do complicated circuit design. If you haven't touched on this stuff before and are interested let me know, I still tinker with these things so know some of what's out there.

    Looking forward to seeing how you get on :)

    Ryan
     

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