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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. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I've been sent this by the researcher himself. It looks 'reasonable' but obviously I'd encourage anybody considering taking part to read all the detail provided, including the files attached to this post.
    For further details and contact information see the attachments, Participant Information Sheet - Summary gives an overview, Participant Information Sheet gives more in depth detail.
     

    Attached Files:

    Barry, Hutan, Sean and 6 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't understand what makes this academic research rather than market research for some electronic devices of no known medical validity. The brain wave device looks complete quackery.
     
  3. Adrian

    Adrian Administrator Staff Member

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    I think this is a group who are studying how people interact with technologies and the different interaction styles that work for people with different abilities. Its an important area of work in terms of getting new styles and designs of how people work with computer systems and how this can changes as new technologies happen. There is a degree of cognitive science here in terms of trying to match the interfaces to peoples mental processes and models (or that is how I understood it from someone who worked in the area).
     
  4. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Don't trust anything Me/cfs-related coming out of Bath.
     
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    To be fair, the more problematic research relates to the University of Bristol - Bath NHS axis rather than the University of Bath. Though geographic proximity may risk exposure to unhelpful belief systems, of itself it should not be sufficient to damn an unconnected University Department.
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Well the chap in charge has on his personal page:

    We aim to deliver next-generation project dashboards and data visualisations that can identify potential project issues, improve productivity, and improve the management of aspects such as intellectual property, risk and cost.

    I can see a value in doing this for something of medical value but does it stretch to widgets that give nonsense outputs?

    Won't recruiting people who want to play with widgets just indicate how much they like playing with widgets?
     
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  7. Adrian

    Adrian Administrator Staff Member

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    In general terms data visualization is becoming a big reseach topic as we collect more and more data it is hard to present it in ways that are easy for people to understand and pick out useful information or judge trends. Often it is about presenting high dimentional data in ways that people can easily visualize.

    The importance is not to have nonsense output but to look at what people are understanding from various views on data and how long it takes them to see and understand the important things.
     
  8. Adrian

    Adrian Administrator Staff Member

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    It is a different department - this is from the computer science. Universities are not very joined up institutions so different research groups can have very different views and ideas (and even compete!). Look at Oxford where Sharpe is but also Karl Morton who is doing very good research.

    I know nothing more about the research than what Andy has put here.

    I would also point out that Crawley is Bristol University but works out of a Bath NHS hospital as a doctor.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But what is they see and think they understand what is important but in fact none of it is important!! Who decides whether they have understood what is important?
     
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  10. Adrian

    Adrian Administrator Staff Member

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    Off hand there are two things of importance. The first is where we have large datasets from which data scientists spend a lot of time pulling out information and trends can we make that quicker and easier and allow people without technical skills in data manipulation to see the information. The other way is to use visualisation techniques to pull out new information from data - in my world of computer security this can be important (and validated) in that analysts spend time looking at log files of what is happening and if they can find previously unknown attack patterns this becomes very important. And the attacks can often be validated once found by a more careful examination of the data. But here we are talking about situations where millions of events and terabytes of data are recorded.

    But this is taking the thread off topic
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    The framing of how patients would use the data is bizarre. There is very limited usefulness. This kind of data is useful for research when gathered under a strict and reliable protocol. For patients, not so much. Odd.
     
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  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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  13. Andy

    Andy Committee Member (& Outreach when energy allows)

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  14. ringding

    ringding Senior Member (Voting Rights)

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    Going to stick my head above the parapet here...
    I've participated in this trial. I've been using my Fitbit to help me with trying to keep my activity below the threshold that triggers PEM for a couple of years and was interested in whether the addition of another sensor could help with identifying which activities are more effort than others (mentally). I didn't consider looking into the science of the sensor. There was nothing to lose as meetings were held via skype, so no travel, and wearing the headset and using the app could be built into what I do day to day anyway.
    At the end I was asked questions that related to the usefulness of the data, combined in their app, for monitoring my symptoms and seeing if there were any correlations to activities and how I felt.
    I had a couple of conversations with the researcher and I don't believe there is any other agenda than the interest in how the sensors could be used.
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Fair enough but the mention of 'industrial partners' makes it pretty clear that this is being financed by the manufacturers.

    I have no doubt the researchers would like to think they are being helpful but then this is the problem with the therapists at Bath - and they like to think they are being helpful. If the 'brainwave sensor' is complete nonsense then I do worry.
     
  16. ringding

    ringding Senior Member (Voting Rights)

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    A lot of the questioning revolved around how much trust I had in the sensor readings and it's accuracy. To which the responses were 'low' and 'don't know'. Couldn't really comment on accuracy as unless working at the extremes (meditating versus concentrating hard on a conversation) then it was difficult to distinguish what the results were trying to say. It's possible that with better processing of the data, and correlating against the other metrics, some meaningful trends could be pulled out.
    I hope that their intentions are genuine, even if motivated by a Commercial one. In my view anything that can help an individual understand their symptoms and how that maps on to PEM, crashes etc. would be useful in helping ensure that energy thresholds aren't exceeded.
     
  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    From the participant information sheet linked in the opening post:
    I am skeptical as to whether this 'Neurosky MindWave' and the apps are actually able to measure all those things.

    Also, I find it strange to describe "how calm or clear-minded" someone is as 'Meditation'.

    Further quotes from the information sheet:
    This is followed by the advice:
    Could be well intented, could also be mainly intented to get the ethic committee's approval.

    I didn't find information about how the trial is funded.

    Edited for clarity.
     
    Last edited: Oct 20, 2019
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My worry is that people like yourself might actually think that the mind wave measurer had some sort of scientific basis and could actually measure something. The sort of equipment I think being used cannot possibly indicate anything about brain function. It is a bit like using a volume readout on an audio amplifier to tell whether the person speaking is telling the truth, or reciting Shakespeare. It is complete nonsense - to the extent that I think it is misrepresentation. It will bear no relation to creativity, activity, meditation or anything.
     
  19. Trish

    Trish Moderator Staff Member

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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Which tells you b***** all, and anyway they are different in different places in the brain. A real interpretation of an EEG is a bit like reading an orchestral score and picking out the harmonies.
     

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