A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome, 2023, Snell et al.

[SNT Gatchaman]

A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome
Gracie Elizabeth Snell; Catherine Heidi Seage; Jenny Mercer

Whilst chronic fatigue syndrome (CFS) has been widely researched amongst women, studies investigating how men experience a CFS diagnosis is limited. This study utilised an interpretative phenomenological approach to interview five men who have a medical diagnosis of CFS. Six themes emerged to demonstrate the participants’ experiences prior to, during and after obtaining their CFS diagnosis.

Findings revealed that participants were initially reluctant to accept their condition, confounded by their perception that symptoms compromised their sense of masculinity. They also felt that healthcare professionals had limited recognition of CFS leading them to seek social support and legitimisation from other sources. The struggle to come to terms with a different lifestyle and sense of masculinity prevailed. Such knowledge could be effectively utilised by researchers, practitioners and employers to facilitate an increased understanding of male accounts of the condition and more bespoke interventions where required.

Link | PDF (Journal of Health Psychology, paywall)

 

[SNT Gatchaman]

Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), is a multifaceted and poorly understood condition

Prominent symptoms of CFS consist of lingering exhaustion, muscle aches, joint pain and cognitive dysfunction. Additional CFS indicators include an light sensitivity, insomnia and swollen lymph nodes

Biological factors, such as differences in hormones or immunologic responses, may go some way to explaining sex differences in CFS prevalence rates. However, society-imposed norms surrounding the concept of masculinity could be an alternative explanation for these sex differences in prevalence, as these may influence whether males seek medical help

(Not sure it matters if there is no medical help.)

 

[SNT Gatchaman]

The current research sought to gain a phenomenological understanding of the male experience of living with CFS, focusing on seeking medical advice, accepting a diagnosis and receiving support. Six themes emerged to demonstrate the participants’ experiences prior to, during and after obtaining their CFS diagnosis. Interviews highlighted that the symptoms experienced by males were consistent with the diagnostic criteria for CFS (NICE, 2021). Despite this, the group all had difficulties in gaining a diagnostic label, with masculine norms inhibiting recognition of symptoms and acceptance of a new life with a chronic illness. This was further compounded by a perceived lack of recognition of CFS as a legitimate health condition by the medical community.

 

[SNT Gatchaman]

For these participants, gaining a formal CFS diagnosis often took many years, leading to feelings of frustration with the medical system. Despair was often compounded by a perception that symptoms were being falsely attributed to poor mental health.

Finally, the ability for participants to confide in their experiences to other males (with or without CFS), positively contributed towards illness acceptance and emotional comfort.

Additionally, Wilde et al. (2019) reported that participants found social media-based support groups a beneficial source of CFS information. In the current study, however, men did not utilise support groups and instead, proposed the need for more widely available support groups targeted specially for men with CFS.

Developing a variety of interactive support groups could lower the prevalence of severe CFS cases by improving the rate of addressing symptoms, but it may also improve the alignment of current practice surrounding the NICE principles of care (NICE, 2021). In addition, establishing effective support mediums will enable GPs to signpost effective person-centred support for patients with CFS from the onset of their diagnosis.

 

[Andy]

How many participants did they speak to?

 

[Trish]

How many participants did they speak to?

5

 

[NelliePledge]

5

3 authors 5 participants. Underwhelming

 

[Grigor]

Very small cohort but I would love to read it.

 

[CRG]

What is phenomenological research?

The philosophy of phenomenology resides within the naturalistic paradigm; phenomenological research asks: ‘What is this experience like?’, ‘What does this experience mean?’, and ‘How does the lived world present itself to the participant or to me as the researcher?’ Not all health research questions that seek to describe patient or professional experiences will be best met by a phenomenological approach; for example, service evaluations may be more suited to a descriptive qualitative design, where highly structured questions aim to find out participant’s views, rather than their lived experience.

https://ebn.bmj.com/content/21/4/96

 

[rvallee]

confounded by their perception that symptoms compromised their sense of masculinity

Nope. I know that it affects how people see men, our perceived value to society is our work, but it has not affected my sense of anything. It really only affects the perception of others, at least in my case.

I don't see the point of those studies, they never really reflect the patients' experience, only a small snapshot of it from someone else's perspective. It's trying too hard to change the subject. We're ill, we're neglected, most of the consequences are fully generic and none of them are under our control. For sure this doesn't help patients. I'd much rather they just let us speak for ourselves without filters, and there's plenty of that on the Internet already.

And I'm really sick of this:

This was further compounded by a perceived lack of recognition of CFS as a legitimate health condition by the medical community.

It is. Quit pretending it's just our perception. It just is, it's on purpose, and we have nothing to do with it. Deal with it, blame the right people.

 

[Dolphin]

ME Research UK summary of paper:
https://www.meresearch.org.uk/lived-experience-of-men-with-me-cfs/

 

[Ash]

Nope. I know that it affects how people see men, our perceived value to society is our work, but it has not affected my sense of anything. It really only affects the perception of others, at least in my case.

I don't see the point of those studies, they never really reflect the patients' experience, only a small snapshot of it from someone else's perspective. It's trying too hard to change the subject. We're ill, we're neglected, most of the consequences are fully generic and none of them are under our control. For sure this doesn't help patients. I'd much rather they just let us speak for ourselves without filters, and there's plenty of that on the Internet already.

And I'm really sick of this:

It is. Quit pretending it's just our perception. It just is, it's on purpose, and we have nothing to do with it. Deal with it, blame the right people.

Yes @rvallee. Every word.

Sly as fuck. Oh dear we’ve been neglecting the men. Poor guy no diagnosis! Too proud and full of manliness. Here you go mate, here’s a great big steaming pile of “C.F.S” research study for you!
I except you feel less neglected and overlooked now don’t you?
No?
Well perhaps your masculinity is having a flare up?

Also seems like the obnoxiousness was catching, I hope the questions predetermined the answer. Otherwise how do any of these men believe that women with “CFS” are getting better treatment for the CFS that’s a direct diagnosis so much stigmatised these illness that these men feel ashamed for having it? That situation didn’t come about off the back of the minority of men with the diagnosis that society is barely acknowledging exists. Perhaps they are envious of how many pictures of young well dressed women with their head in their hands are displayed next to the words CFS in the media? Is misrepresentation better than zero, is it the same as healthcare, are they new patients and believing what they hear about all the “tailored support” going around, and assuming if they aren’t seeing any of this it must be because the woman are having it all?

I’ve known close as many men irl with “CFS” as women. That’s not gonna be representative though, there are a lot more women overall, so I can imagine it could be harder to connect to other men on that level. But get online where the men hold their own, why not?

The lack of peer support might have a little bit more to do with extreme fatigue from the CFS rather than say the burden of masculinity weighing them down perhaps? Or you know maybe because someone somewhere once said that joining a support group was associated with worse outcomes or predictive of a poorer prognosis. Something like that? …

Maybe the authors of this study are arguing that because of expectations to perform masculinity, men may find it difficult to be open and vulnerable enough with others and connect for support. Okay. But unless their also arguing that men without “CFS” don’t need support or to connect to others that’s not a “CFS” problem that’s something else. So perhaps they should take pack up their “perceptions of stigma” and “legitimacy” and get out of here.


It would good to have studies on disability and gender identity that include men with ME, LC and other diseases where men are underrepresented. But that’s not a project “CFS” researchers would be able to touch, without being over come by the abiding motivation to go on in and twist the knife on their subjects.