Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome (2019) Tabby Davies, Simon Jones, Ryan Kelly

Source: ACM CHI Conference on Human Factors in Computing Systems 2019

Date: May 4-9, 2019

URL:
https://researchportal.bath.ac.uk/e...-on-self-management-technologies-for-chronic-

Ref: https://chi2019.acm.org

Patient perspectives on self-management technologies for Chronic Fatigue Syndrome.
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Tabby Davies, Simon Jones, Ryan Kelly
- Department of Computer Science, University of Bath, U.K.

Abstract

Chronic Fatigue Syndrome (CFS) is a debilitating condition that is characterised by a range of physical, cognitive and social impairments.

However, a lack of clinical consensus around effective treatments for CFS means that patients typically engage in self-management of their symptoms. In this paper we investigate CFS patients' perspectives on the potential for technological support for their self-management practices.

We report findings from three studies in which people living with CFS

1) prioritised symptoms that they would like technologies to address,

2) articulated their current approaches to self-management alongside challenges they face, and 3) reflected on their experiences with three existing smartphone apps related to symptom management.

The findings provide insight into the specific needs of CFS patients and show how their self-management goals diverge from the general notion of 'self-tracking' as currently understood by the HCI community. We also reflect on the ability of researchers to engage in a participatory process with individuals suffering from severely debilitating medical symptoms.

Keywords: Health and Wellbeing, human computer interaction, Chronic fatigue syndrome/myalgic encephalomyelitis, Technology

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(c) 2018 University of Bath

 

It will be interesting to see the full paper when it becomes available, as I am very unclear what to understand from the abstract.

Is anyone aware of the three existing 'smart phone apps relating to symptom management'?

I am perhaps, unsurprisingly given the disastrous reputation of the clinical ME/CFS services and research in Bristol and in Bath, very wary of anything linked to either of these cities, but can not tell from this abstract if I am being unfair or not?

 

There was an app promoted by Bath which was available via NHS, around 4 years ago. But when i looked into it, it was no longer available . Activity management app.

 

Just did a search for Chronic Fatigue Syndrome in Apple's App Store and came up with the following:

• Chronic Fatigue Syndrome Diary - cellHigh £4.99
• Free ME/CFS Meditations from Chronic Fatigue ME & - Aluna Moon Publishing £13.99
• Pain Diary & Community CatchMyPain Pro - Sanovation Ag £6.99
• Chronic Fatgue Syndrome Guide - Kevin O'Brien £3.99
• Fibromyalgia by AzoMedical - Azo network free
• Pace it - No Moss Co Pty Ltd £1.99
• MissingMillions a Profile Filter - William Hodges free

A search for Myalgic Encephalomyelitis only brought up the last two. As these searches were done on an iPad it only would bring up Apps with versions for iPads so there may be more for other platforms.

Added- Further searches for ME/CFS and CFS/ME brought up the following further Apps in addition to the above:

• B12 Deficiency - B12 Global Ltd £4.99
• PA Pernicious Anemia - B12 Global Ltd £4.99
  
• Chronic Illness Monitor - B12 Global Ltd £4.99
  
• FibroMapp - Bodymap Apps £2.99

 

I may be repeating this, not sure, no extra power to check at the moment:

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

 

Self-Management Technologies?

Like on the The Jetsons? Well, that flying car is pretty cool, and all the robots would be helpful, but my heart belongs to Astro, so it's a difficult thing..

How about any technology that extracts The Media from up the posterior of State Medical Nonsense?

 

This paper is cited by this thesis https://digital.lib.washington.edu/...ington_0250E_21985.pdf?sequence=1&isAllowed=y to back up these 2 points:

https://twitter.com/user/status/1325117063392866307

https://twitter.com/user/status/1325117957601636352

 

I have used a fitbit for years and never felt ashamed of how much/little I can do. It is a good tool which suits me.

Some days I do not realise how much I have done so it helps me know to rest. I like the sleep notifications and heart rate function.

It is the medical profession and other people who make us feel ashamed though I do not think shame is much of a problem compared with the frustration of knowing we are physically ill but not having it acknowledged.

It reminds me of being in hospital where no one seemed to care about what I felt were my problems but insisted on spending time on things that were irrelevant

 

My heart rate monitor has never left me feeling frustrated and ashamed. In fact it never occurred to me to have any feelings about it whatsoever. It's a tool, a machine, a thing. As long as it serves a purpose I use it, and if it stops being useful I'll discard it, leaving it feeling rejected and hurt. Maybe the authors' next paper should be about feelings of abandonment in discarded technological appliances.