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

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.

 

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.

 

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

 

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.

 

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?

 

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?

 

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.

 

Interesting paper on initial work they have done.

https://people.bath.ac.uk/cs3sj/papers/CHI2019-jones.pdf

Not sure I would say ME leads to social impairment, more like social limitations due to physical and cognitive problems.
Have not yet read the full article.

 

Discussed here, https://www.s4me.info/threads/patie...019-tabby-davies-simon-jones-ryan-kelly.7850/

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.