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Open UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Oct 20, 2019.

  1. Trish

    Trish Moderator Staff Member

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    :)
    Thought it might. I seem to remember it was fashionable back in the 1970's in the meditation/alternative medicine world, but I'm half asleep at the moment, so I could be misremembering.
     
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  2. ringding

    ringding Senior Member (Voting Rights)

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    I did query the researcher on that a bit but he's a computer scientist and I think is just taking the stated outputs of the headset at face value. My exact words to him were "I'm amazed they can get all that from two contact points", being an earlobe clip and a forehead electrode.
    I would research it but I suspect the detail would be more than my poor little brain could cope with!
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, well, academics are not supposed to do that - whatever discipline they might be in. They are supposed to know whether what they are doing means anything.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    OK this makes more sense. But surely there are better patient populations for this given that we do not have any objective correlates to relate to.

    I have personally found not much usefulness out of one given that I generally feel the effect of doing too much and don't need confirmation, but maybe it's not as clear with everyone.
     
  5. ringding

    ringding Senior Member (Voting Rights)

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    Before this relapse I'd have agreed with you. I thought I had it all sussed. But now I'm struggling to get a handle on it. The last 6mths have been awful with being more or less stuck in bed at my worst. Last 6wks been better and more predictable and I thought I'd cracked and then the last 3 days have been my worst in months, for no obvious reason. I was hoping it might shed some light on it all for me. No luck though.
     
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  6. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Isn't this a bit late? as the study was being done between August and October 2019.
     
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  7. Andy

    Andy Committee Member (& Outreach when energy allows)

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    As he contacted me less than a week ago my guess is he has struggled to recruit patients and so it's still ongoing.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Granted, I am moderate-severe, ~99% housebound but have never been bedbound. But then anyone who can participate in such a study is unlikely to be this severe so it wouldn't really be applicable.

    Worse off and I could see some use if truly necessary to completely avoid going above a certain level of exertion.
     
  9. Cillian Dudley

    Cillian Dudley New Member

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    Hi Everyone,

    My name is Cillian and the research is being conducted by me and my supervisor, Dr Simon Jones. I thought it might be helpful to provide some responses to some of the previous comments.

    The headset being used is a commercially available EEG headset, with a cost of $99 (~£80). The research is not funded by the manufacturer of the headset, my PhD itself is funded by a "University Research Studentship Award". My PhD in general looks at how people might try to make sense of data from novel sensing technologies.

    This is definitely not intended as market research for the device. The device itself is an example of a commercially available sensing technology and we are interested in hearing people's opinions about how such devices may be useful (or not useful), and how they interpret the data that it provides.

    Correct. I am situated within the Human-Computer Interaction group in the Department of Computer Science, as such the research is focused on the potential uses of the commercially available sensors and how the associated app (and features within the app) might be used.


    We are still looking for participants for this study so the study is being extended, likely until at least January 2020.

    I'm happy to answer further questions that you may have about the study
     
    Last edited: Oct 22, 2019
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Hi @Cillian Dudley,

    But is it more than market research for the device in reality? No doubt you hope it will be useful to people but if the device is completely useless, which as far as we know it is, then how do you make any sense of people saying they think this or that information is useful? Isn't it likely that they will think it is useful because they have been led to believe that certain read outs might tell them something about what they should or should not do in the way of exertion? And we have no idea what if anything tells anyone that. The fact that mental exertion is also a problem in ME suggests that things like heart rate may be completely irrelevant to what makes people feel worse (PEM). And a minimal EEG set up is not going to tell us anything about things like creativity or mental exertion.

    If you were studying an astrology app and people said that the Star sign display was helpful and the phases of the moon were particularly useful what would you do with the result?

    Sorry to be blunt but my thought is that whether or not an interface is well designed is bound in with whether or not there is something meaningful for it to be well designed for. As an example, the way you design a map presentation entirely depends on what people are wanting to use the map for.
     
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  11. Adrian

    Adrian Administrator Staff Member

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    Is your PhD programme part of one of the CDTs?

    I think one of the interesting problems is around how technology can be used to measure activity (including mental activity) and then look for trends over time to look for patterns in activity which could relate to PEM or try to use such patterns in trials (or otherwise) to judge interventions. So activity monitors if they work or say something useful and agregated multi sensor views could be useful here,
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Absolutely. I guess a more positive way of putting my thoughts would be that this is a really crucial area to investigate and assessing activity-monitoring devices is something I have tried to encourage researchers to get involved with, BUT patients will have absolutely no way of knowing what information collected is useful and in what way - that will need seriously sophisticated mathematical analysis by people with an understanding what computer-based analysis can do, in collaboration with people with a sophisticated understanding of neurophysiology.
     
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  13. wdb

    wdb Senior Member (Voting Rights)

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    Have to say I'm also a bit unsure about this.

    It sounds like we have quite a limited understanding of what brainwaves mean
    https://en.wikipedia.org/wiki/Electroencephalography#Wave_patterns

    along with a lot of artefacts making it difficult to measure them
    https://en.wikipedia.org/wiki/Electroencephalography#Artifacts

    Where is the research showing that we can accurately measure states such as Appreciation, Attention,Cognitive Preparedness,Creativity, etc using such a device ?

    I'm also a little nervous that any research that might find a correlation between brain activity and symptoms will be jumped on by the all-in-your-head crowd.
     
  14. TiredSam

    TiredSam Moderator Staff Member

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    It was fashionable in the 80's and 90's in language learning - Superlearning, Accelerated Learning, the Lozanov method, etc etc. I did very well out of that for 5 years, after writing The TiredSam English Language Course based on Superlearning principles and selling and teaching it to some multi-national corporations. It ended when I was fired by a new personnel manager who was worried about me using cult-like practices in the classroom (what's wrong with asking everyone to lie back and close their eyes whilst my voice flows into their subconscious?).

    Looking back 20 years later, I can see it was all a load of bo**ocks, but like I said I did well out of it and it was fun. And a lot of people learnt English - but I see now that it was because of everything else I was doing which wasn't based on the left-brain right-brain brainwave nonsense. Oh well, happy times, I was young, had 4 teachers working for me, and was planning to conquer the world. Back to the drawing board.
     

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