Protocol for a qualitative study on the online connections of people with ME/CFS and the relationship between online connections and offline lives

John Mac

John Mac

Senior Member (Voting Rights)

Abstract
Introduction Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a debilitating chronic illness that affects the central nervous and immune systems, causing core symptoms of extreme fatigue, post-exertional malaise, cognitive issues and sleep disturbance. With reported higher online use than in other chronic illnesses, people with ME/CFS are often housebound and isolated and may struggle to maintain social relationships. Due to a lack of biomarkers, the illness is often contested, causing invalidation and stigma for those affected. This study aims to broaden the knowledge on how people with ME/CFS gain online connections and whether and how these connections integrate into and impact their everyday life.

Methods and analysis Qualitative interviews will be conducted with adults aged over 18 years with a diagnosis or self-diagnosis of ME or CFS (n=20–25). A semi-structured topic guide will be used to interview participants and explore online connections and relationships between these and everyday life with ME/CFS. Interviews will be recorded and transcribed verbatim. Data will be thematically analysed to gain in-depth insight into this largely unexplored topic.

Ethics and dissemination The study has ethical approval from the University of Birmingham (reference: RN_1722-Jun2024), and informed written consent will be provided by all participants. Findings will be published in peer-reviewed journals and disseminated to advocacy organisations and health professionals seeking to offer remote support for people with ME/CFS and their families. This study will provide crucial insight into online use and how it can guide the formulation of management plans for people who may currently receive no support from health professionals at all.
http://creativecommons.org/licenses/by-nc/4.0/
 
The interview guide is in the supplementary files. To be blunt, I can’t say I understand how it’s going to produce any worthwhile information.

The protocol also cites the wrong source for the claim that ME/CFS patients has a higher used of social media. This is the original source:


I hope Shortland is aware of the serious flaws and bias in the interpretations of that article, and that it was unethically done without the consent of the population that was being studied.

The local ethical committee didn’t have a single objection at the time..
 
Sasha said:
I'm always a bit baffled about this focus on the use of social media by PwME.
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I could see some interesting research in the area. Given PwME are often house bound and find talking with people in person often leads to PEM I can see interest in looking at how social media use can help create connections and how this can be done to avoid PEM. Also from a usability/experience perspective what things work/don't work in terms of display/modes of interaction etc to avoid triggering PEM (we've had lots of discussion of such things as I updated the forum software).

I've not looked at the proposal but I could see some interesting and practical research could be done.
 
Adrian said:
I could see some interesting research in the area. Given PwME are often house bound and find talking with people in person often leads to PEM I can see interest in looking at how social media use can help create connections and how this can be done to avoid PEM. Also from a usability/experience perspective what things work/don't work in terms of display/modes of interaction etc to avoid triggering PEM (we've had lots of discussion of such things as I updated the forum software).

I've not looked at the proposal but I could see some interesting and practical research could be done.
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I don’t see how research can contribute in any meaningful way in that area.

The internet can be useful for pwME/CFS, but guidance from HCP won’t make a positive difference and probably make it worse.
 
Utsikt said:
The internet can be useful for pwME/CFS, but guidance from HCP won’t make a positive difference and probably make it worse.
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I was more thinking of guidance to people like web designers, service providers etc to make things usable. I think patients sharing experiences can be very positive as well (although not via HCP).

[Added] Also from a public policy perspective acknowledging the importance of internet provision, ability to communicate this way whilst still acknowledging the level of disability is important.
 
Adrian said:
I was more thinking of guidance to people like web designers, service providers etc to make things usable. I think patients sharing experiences can be very positive as well (although not via HCP).

[Added] Also from a public policy perspective acknowledging the importance of internet provision, ability to communicate this way whilst still acknowledging the level of disability is important.
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Sure, but that isn’t what’s being done in this study.

If they wanted to add value, the could have looked at how non-inclusive web and technology design hinders the use by pwME/CFS.
 
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