Open Masters Research Project: Individual's experiences of music with ME/CFS

GarrickWUWE

GarrickWUWE

Established Member
Hi! I’m Garrick, a research student at the University of the West of England (UWE). I’m looking to speak to people in the UK with Chronic Fatigue Syndrome about their experiences with/of music for a masters research project. I’m planning to use video calls to do interviews so there’s no requirement to travel.

The hope is to interview between 3-5 people, if there’s a large amount of people happy to interview then I will be creating a waiting list should there be anyone that decides not to complete the series of interviews.

If you’re a UK resident that’s 18 or over that would be interested in doing a series of short interviews about your experiences of music then please get in touch.

Thank you for taking the time to read, and I hope to speak to some of you soon.

Email for enquiries:
Garrick2.Wareham@live.uwe.ac.uk

Link to demographics questionnaire and participation:
https://uwe.eu.qualtrics.com/jfe/form/SV_cBkFgorPSUofzJs
 

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Hi Garrick did you read through the other thread you posted? A lot of us contributed.
I notice you have said you want to speak to people who have “Chronic Fatigue Syndrome” which isn’t a term which is currently used, in fact it is considered quite offensive, as it deliberately replaced Myalgic Encephalomyelitis to make it sound less debilitating. The term currently is ME/CFS as we try to reclaim the name.
 
I can't listen to music anymore and I can't do 30 minutes zoom calls either. Not an uncommon experience with this disease, perhaps a bit more research into what is already known is necessary before embarking on a project that will start from a highly biased position that excludes the most severe patients. This is a disease with a very severe impact on auditry processing, music would harm not help.
 
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MrMagoo said:
I notice you have said you want to speak to people who have “Chronic Fatigue Syndrome” which isn’t a term which is currently used,
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And importantly does not have any generally recognised defining criteria.

I see a significant problem with the project format at present in that there is no way of arguing that it will be representative of a group (if the group is not well defined and there are major biases that will affect who gets interviewed with a very small sample). Which means it is not going to be generalisable for use in any further research or practice.
 
Jonathan Edwards said:
And importantly does not have any generally recognised defining criteria.

I see a significant problem with the project format at present in that there is no way of arguing that it will be representative of a group (if the group is not well defined and there are major biases that will affect who gets interviewed with a very small sample). Which means it is not going to be generalisable for use in any further research or practice.
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Also that sensitivity to sound and music is widely reported as problematic by pwME, it’s ethically problematic.
And some of us cant speak much.
 
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I'm one of a minority here who can still listen to and play music. I'm not as skilled as I was before I developed ME/CFS 50 years ago, but that's mostly to do with brain fog and slowed processing.

I can't help, though, as music's not a therapy (luckily; I doubt anybody would fancy being therapped by tin whistle and accordion!), it's a social activity.

I'm wondering what made you choose people with ME/CFS? Most of us have such severely limited activity capacity that any non-disease modifying therapy seems unlikely to make it onto our priority lists. Even for folk who can still cope with the sensory input it'd be very hard work, it'd almost certainly make them feel worse by triggering PEM, and it'd involve sacrificing other activities that are necessary or of value. Of all the chronically ill / disabled populations, we're one of those to which music therapy is least accessible.


ETA: Sorry for clunky sentence structure and any apparent unfriendliness—not intentional. St Patrick's tomorrow, been at the diddly music more than usual, and my brain seems to be drunk already.
 
Kitty said:
I'm one of a minority here who can still listen to and play music. I'm not as skilled as I was before I developed ME/CFS 50 years ago, but that's mostly to do with brain fog and slowed processing.

I can't help, though, as music's not a therapy (luckily; I doubt anybody would fancy being therapped by tin whistle and accordion!), it's a social activity.

I'm wondering what made you choose people with ME/CFS? Most of us have such severely limited activity capacity that any non-disease modifying therapy seems unlikely to make it onto our priority lists. Even for folk who can still cope with the sensory input it'd be very hard work, it'd almost certainly make them feel worse by triggering PEM, and it'd involve sacrificing other activities that are necessary or of value. Of all the chronically ill / disabled populations, we're one of those to which music therapy is least accessible.


ETA: Sorry for clunky sentence structure and any apparent unfriendliness—not intentional. St Patrick's tomorrow, been at the diddly music more than usual, and my brain seems to be drunk already.
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Yeah, it’s not up there with exercise therapy, but it’s on the same list I’d say. Big list marked “danger- high risk”.
 
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