Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers, 2019, Tobbell et al

Andy · Apr 17, 2019

ABSTRACT
Media portrayals of conditions such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) demand exploration as the media is a potent source of information and meaning, and as such has the potential to inform public and professional understandings. To date, there is little systematic exploration of print media representations of CFS/ME. In this study, we address that gap by exploring the voices of CFS/ME sufferers in the English print media (1998–2015) from a constructionist feminist perspective.

We found that portrayals of CFS/ME differ meaningfully, depending on gender. The psychological and emotional tended to be foregrounded where women were concerned and the scepticism surrounding CFS/ME as a “non disease” was much more evident. On some occasions this was dealt with directly, whilst on others it was “leaked in” or hinted at. This serves to delegitimise the illness in women. In contrast, the physical was usually foregrounded in the case of men suffering from the condition and their experiences were accredited greater legitimacy. We problematise these representations and discuss the potential impact upon public and professional sympathy, treatment options and long-standing, gendered constructions of illness.
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Paywalled at https://www.tandfonline.com/doi/abs/10.1080/14680777.2019.1595694
Sci Hub, https://sci-hub.se/10.1080/14680777.2019.1595694

Trish · Apr 17, 2019

OK, I'm a feminist, and the Journal is called 'Feminist media studies' so I suppose they felt obliged to say they had done the study 'from a constructionist feminist perspective'. But surely a study should be done from a neutral perspective looking at whether articles have gender related differences, rather than going in with a fixed perspective.

Sly Saint · Apr 17, 2019

Consequently, CFS/ME has been positioned as a psychiatric illness by the predominantly
male dominated realm of medicine (Jean A. Hamilton 1994; Lisa Cosgrove, Melissa Pearrow,
and Maria McKivergan 2008; Sally Swartz 2013).
Treatments feature psychiatric medications and/or psychotherapeutic interventions (Judith Richman and A. Jason Leonard 2001).
Although it is widely accepted that there is a psychological component to CFS/MS (e.g.,
Wally Karnilowicz 2011; Kaethe Weingarten 2013), research exploring the psychological
component of chronic illnesses in both women and men suggests that this is “part of the
illness experience” as opposed to the cause.
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It may be that CFS/ME has inadvertently been abandoned in the “psychiatric wilderness” and despite the number of sufferers, medical training currently fails to prepare physicians for dealing with CFS/ME.
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We anticipated that the voice of the sufferer would allow us to explore the extent to
which more official (e.g., psychological and psychiatric) discourses around CFS/ME were
reproduced, reworked or resisted by sufferers themselves and also allowed us to identify
how the subject (the sufferer) as well as the object (CFS/ME) were construed.
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We included the voices of both women and men who identified as suffering from the
condition as although the focus of the research was on depictions of femininity and
CFS/ME, as outlined previously, we believed that examining how men suffering from the
condition were positioned in comparison would be illuminating. Applying these criteria
resulted in 23 articles which made up the final dataset: The Daily Mail (n = 8), The Sun
(n = 6), The Times (n = 4), The Guardian (n = 3), The Independent (n = 1), The Observer
(n = 1).
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We wish to make no attempt here to deny the legitimacy or severity of the psychological
distress associated with CFS/ME and fully accept the relationship between mental
health issues and physical symptomology (Abhijit Chaudhuri and Peter O. Behan 2004;
Francis Creed 2009; Stephanie Leone 2010). We are cognizant of the fact that problematising
the mental health label attached to CFS/ME in some ways suggests that mental
suffering is less acceptable or legitimate than physical suffering, a position we strongly
reject
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Gary explicitly rejects the notion that he is suffering from a psychological condition. He
claims “physical exhaustion” which implies that his illness was a result of leading
a lifestyle that was perhaps too active, thus enabling Gary to position himself as
a good, healthy neoliberal citizen. Given the argument here that depression is implicitly
and explicitly constructed as a female condition it appears that Gary is attempting to
distance himself from feminised constructions of psychological fragility.
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it seems to be coming from the angle that CFS/ME is a mental health issue that is stigmatised (like other mental health disorders). The fact that the genders are treated differently is almost irrelevent in this context.

Hutan · Apr 17, 2019

It's qualitative research, with all the inherent biases that that implies.

But, given that, it was an interesting read.

One of the first features of the data that became apparent during analysis was that, unsurprisingly, CFS/ME was portrayed as predominantly a “woman’s illness.” In the personal narratives that were examined in the study, 21 of the 23 featured women. This exceeds all estimations of the distribution of sufferers in the literature.
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That suggests that only two of the personal narratives featured men. That isn't really enough to draw such firm conclusions about the comparisons (the duvet women versus the action men)

In the articles about women:

Further, the language used and sufferers’ quotes that were selected had a “dramatic” and desperate tone.
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It's nice to see an analysis of how past medical research efforts (or lack of them) are mis-represented: (SlySaint, I reckon the authors are on the fence about whether ME/CFS is a mental health issue.)

In the Nineties, 85 per cent of patients with ME around the world are female, and despite an enormous medical research programme, no physiological or biochemical explanation of the illness has ever been confirmed. ‘Human Condition: ‘I am a duvet woman: this bed is my mother, my lover, my wife’. Showalter, Elaine, The Independent [London, UK] January 25 1998:4.

The excerpt above begins by establishing the global gendered nature of CFS/ME. Showalter then emphasises (and exaggerates) the effort that has been put into identifying a physiological cause, thus closing down any possible claim that a failure to identify such a cause is due to a lack of funded research activity. Rather, the suggestion is that a physical aetiology has not been identified because there isn’t one. The implication that CFS/ME is “all in the mind” and further, “all in the female mind” whilst implicit, is transparent here. Indeed, Showalter’s work on illnesses such as CFS/ME (e.g., Showalter 1997) has caused a considerable amount of controversy (see Carol Tavris 1997; Toril Moi 1985) by seemingly suggesting that this is indeed a contemporary manifestation of hysteria.
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Male representation:

In the excerpts above, the emphasis is on incredibly physically active men being “struck down” with CFS/ME and numerous references are made to sporting activities and occupations which require a high level of physical fitness.
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the men are abdicated of any responsibility for their illness.
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Female representation:

References to the impact of CFS/ME on the sporting activities and careers of women sufferers, in contrast, were notably absent in the articles with the focus being placed more usually on how their relationships (e.g., with family members) and ability to function socially were affected, thus drawing upon long-standing notions that relationality and sociability are hallmarks of femininity (e.g., Roberta Oetzel 1966).
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Further than this, as demonstrated, constructions of CFS/ME in British print media are deeply gendered. Women who were sufferers were depicted as emotionally and psychologically distressed and unstable, child- like and dependent, and emphasis was typically placed on the disruption of the illness to their relationships and social life. In contrast, men were portrayed as physically active and successful before the disease “struck” from nowhere and the physical consequences were foregrounded rather than the emotional and psychological.
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I think it was a good idea to review representations of ME/CFS in the media. It's a shame the samples weren't bigger, in order for the conclusion about the representations of men to have a stronger basis and so that some conclusions about how representations have changed over time could have been made.

I think there is quite a lot more that can be said about representations of ME/CFS in the media and I hope researchers will do more work on the broader topic.

adambeyoncelowe · Apr 17, 2019

Trish said: ↑

OK, I'm a feminist, and the Journal is called 'Feminist media studies' so I suppose they felt obliged to say they had done the study 'from a constructionist feminist perspective'. But surely a study should be done from a neutral perspective looking at whether articles have gender related differences, rather than going in with a fixed perspective.
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It's a media journal with some research elements not a science journal, per se, so it's not going to be written with the same standards as a scientific journal.

Specifically, the 'constructionist feminist perspective' is a statement of framework for the argument that will follow. For example, you might do the same paper with a Marxist framework.

It seems pointless to peer review this stuff, because it's more suited to academic textbooks, but I suppose research publishing is a big industry now.

Media journals (and humanities journals in general) are mainly to publish theses, even if they use research methods in those theses. These are arguments, not scientific research. They might use quantitative and qualitative data for certain papers, but this isn't the kind of paper you'd use at NICE; it's something that would get used in humanities academia for university students to use in their essays.

From the journal's own mission statement:

Feminist Media Studies offers a unique intellectual space bringing together scholars, professionals and activists from around the world to engage with feminist issues and debates in media and communication. Its editorial board and contributors reflect a commitment to the facilitation of international dialogue among researchers, through attention to local, national and global contexts for critical and empirical feminist media inquiry.
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(emphasis mine)

ETA: The feminist framework is clearly the critical part. The empirical bit is the data trawling which will service the critical part. But it looks like the priority is the critical (i.e., argument-based) element rather than the empirical element.

Trish · Apr 17, 2019

I haven't read the paper, so this comment isn't about its content but a more general point about which ME sufferers get their stories told in the media and why.

The following is a personal anecdote that may or may not be representative:

Having done one of the ME show interviews, which are sponsored by the ME association, I was contacted some months later by their media person looking for people they could use in press releases with photos. I was specifically asked how old I and my daughter are, and when I told the media person we are late 60's and late 30's he lost interest.

He said he was doing the press release with the particular slant of it being an illness that hits young people. The press release and articles that followed all featured photogenic young women.

I offered to send photos and information for future use and he never got back to me. To be honest I was relieved - I have no desire to be trashed in the media.

adambeyoncelowe · Apr 17, 2019

Trish said: ↑

I haven't read the paper, so this comment isn't about its content but a more general point about which ME sufferers get their stories told in the media and why.

The following is a personal anecdote that may or may not be representative:

Having done one of the ME show interviews, which are sponsored by the ME association, I was contacted some months later by their media person looking for people they could use in press releases with photos. I was specifically asked how old I and my daughter are, and when I told the media person we are late 60's and late 30's he lost interest.

He said he was doing the press release with the particular slant of it being an illness that hits young people. The press release and articles that followed all featured photogenic young women.

I offered to send photos and information for future use and he never got back to me. To be honest I was relieved - I have no desire to be trashed in the media.
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That's really weird. Your daughter, especially, is slap bang in the middle of the second age group cluster.

James Morris-Lent · Apr 17, 2019

I would be curious to see how patterns have changed recently.
The articles I can recall reading (in the last few years) mostly follow the pattern of either:
-Young person (more often female), active in [sport] and/or [art hobby], wanted to become [idealistic career], tragically cut down before the prime of life.
*or*
-Mom who is tragically unable to care for her children very much.

I suppose the second one is pretty gendered, but not in any particularly offensive way.

...
I would imagine that the farther back you go the more sexist the articles become.

WillowJ · Apr 17, 2019

General comment:

I haven't met many men who feel their ME is not stigmatized.

What I have noticed is that I was able to relate the discriminatory way that my ME is viewed to many discriminatory events in my life that appear to be targeted at my gender.

Of course, there are many things that people like to discriminate against, and different people will have a different set.

About media representations:

I actually noticed the same thing from the parents in Forgotten Plague. Parents of a man patient spoke about their son missing a career/ life in general /sports or some things like that, while parents of a woman patient said that their daughter should be "getting married and making babies."

I noticed because my own parents were always more interested in whether I got married and made babies than whether I had a career and life in general. While I always wanted to travel and have a career.

As it turned out, I did neither.

Londinium · Apr 17, 2019

WillowJ said: ↑

General comment:

I haven't met many men who feel their ME is not stigmatized.
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True, which is why I am very circumspect about what I call my health problems at work. That said, I do recognise a gender bias however: I still remember a (woman) GP telling me "no, you're genuinely ill, not like those women who just refuse to get out of bed".

Trish · Apr 17, 2019

adambeyoncelowe said: ↑

That's really weird. Your daughter, especially, is slap bang in the middle of the second age group cluster.
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Maybe they had enough people and didn't need us anyway. I'm not complaining - I don't want to be in the media, and I wouldn't put my daughter through the stress of it on her own.

Estherbot · Apr 17, 2019

Author information
Rebecca Murray

Rebecca Murray is a post-doctoral researcher affiliated with the Department of Psychology at The University of Huddersfield. Her work uses social media to enable the participation of chronically ill people in research. E-mail: Rebecca.murray@hud.ac.uk
Katy Day

Katy Day is a senior lecturer in psychology at Leeds Beckett University. Katy is a critical social and feminist psychologist. Her research focuses on gender and class identities and the gendered and classed dimensions of body management practices, body and eating distress and family food work. E-mail: K.day@leedsbackett.ac.uk
Jane Tobbell

Jane Tobbell is a University Teaching Fellow at The University of Huddersfield. Her research work focuses on the construction of identity as the result of participation in different communities. E-mail: j.tobbell@hud.ac.uk

adambeyoncelowe · Apr 17, 2019

Estherbot said: ↑

Author information
Rebecca Murray

Rebecca Murray is a post-doctoral researcher affiliated with the Department of Psychology at The University of Huddersfield. Her work uses social media to enable the participation of chronically ill people in research. E-mail: Rebecca.murray@hud.ac.uk
Katy Day

Katy Day is a senior lecturer in psychology at Leeds Beckett University. Katy is a critical social and feminist psychologist. Her research focuses on gender and class identities and the gendered and classed dimensions of body management practices, body and eating distress and family food work. E-mail: K.day@leedsbackett.ac.uk
Jane Tobbell

Jane Tobbell is a University Teaching Fellow at The University of Huddersfield. Her research work focuses on the construction of identity as the result of participation in different communities. E-mail: j.tobbell@hud.ac.uk
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Interesting. It's a weird mix, I have to say. The journal seems a bit muddled. Critical theory + scientific research doesn't really seem like a good pairing to me. They do different things. The first is a 'what if', academic exercise, whereas the second is a 'this is what we found' situation.

If you're looking for empirical evidence, then using a feminist framework is irrelevant. The data is the data. Perhaps they've tacked it on to meet the paper's remit because they couldn't get it published elsewhere?

Critical theory isn't usually concerned with objective truths but rather with different approaches to reading or understanding a text. Combining this with scientific research that seeks objective truths would only seem to undermine the science part.

You'll see lots of undergrads using Freudian theory in their English papers, for example, not because it's accurate or they believe it but because it's a framework they can write about enough to score points on essays. I don't think many of those students take it seriously. Likewise, half the ones using Marxist frameworks are not communist, or even socialist. Maybe this journal missed the memo?

rvallee · Apr 17, 2019

despite an enormous medical research programme
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I'm sorry: what? Where? When? Did it happen in total secrecy? Or not at all?

the men are abdicated of any responsibility for their illness.
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Uh, sorry but: GTFO.

Diluted-biscuit · Apr 17, 2019

Trish said: ↑

OK, I'm a feminist, and the Journal is called 'Feminist media studies' so I suppose they felt obliged to say they had done the study 'from a constructionist feminist perspective'. But surely a study should be done from a neutral perspective looking at whether articles have gender related differences, rather than going in with a fixed perspective.
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Certainly helps them to control the outcome. I guess at least they write their bias for everyone to see.

Wonko · Apr 17, 2019

GFTO?

Yes, I've googled it but none of the results fit.

So does it mean

"Great Find, That's Obvious"?

or

"Gobsmacked, Freakish, Totally Offensive"?

adambeyoncelowe · Apr 17, 2019

Wonko said: ↑

GFTO?

Yes, I've googled it but none of the results fit.

So does it mean

"Great Find, That's Obvious"?

or

"Gobsmacked, Freakish, Totally Offensive"?
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Get the fuck out.

Wonko · Apr 17, 2019

Thank you.

That is not an answer that google came up with.

rvallee · Apr 17, 2019

Wonko said: ↑

GFTO?

Yes, I've googled it but none of the results fit.

So does it mean

"Great Find, That's Obvious"?

or

"Gobsmacked, Freakish, Totally Offensive"?
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Damn, typo

TiredSam · Apr 17, 2019

What a whole load of utter bollocks. The kind of drivel the cultural studies teacher on my parallel course tries to get her students to spout but fails miserably. All the women with CFS I read about in the tabloids are either kick-boxers, burlesque dancers, or starting a career in modelling or as a therapist having overcome adversity with their strength of character and are getting ready to spread their positive message.

gendered constructions of illness
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Yep, everything's a construction.

Katy is a critical social and feminist psychologist. Her research focuses on gender and class identities
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I guessed.

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