Producing ME/CFS in Dutch Newspapers. A Social-Discursive Analysis About Non/credibility 2023, de Boer, Slatman

[Sly Saint]

ABSTRACT
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position.

In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions.

Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established.

https://www.tandfonline.com/doi/full/10.1080/02691728.2023.2171748?af=R&

 

[Sean]

Actors in this debate argue that they know the (clear) causes for the illness,

Only some actors. Some of us have always known there is no causal explanation (thus far).

 

[Solstice]

What have I just been reading....

 

[Hutan]

Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established.

It's true that people in both the BPS and the 'ME/CFS is biological' camps can be way too certain about things. Both can cause problems.

The paper seems to be a review of national media in the Netherlands between 2013 and 2018.

In reaction to this initiative, the Health Council set up a committee that would provide an advice and eventually deliver a report (in 2018) on diagnosing, researching, and treating ME/CFS. During the period 2013–2018, discussions about ME/CFS not only took place within the committee as well as within (Dutch) medical journals, but increasingly in the public realm – in mainstream media and especially in national Dutch newspapers. The emergence of this public discussion may be explained by the fact that the committee’s work created a momentum for such a public discussion. More concretely, as a result of (alleged) frictions within the Health Council committee, several committee members started to discuss their standpoints in national newspapers, and as such, stirred up the debate about ME/CFS. While such a lively debate in national newspapers arguably has repercussions for the ways in which people with ME/CFS are deemed credible or not in society at large, this paper offers a discourse analysis about the construction of knowledge about, and recognition of ME/CFS in Dutch newspapers between 2013 and 2018.

 

[Grigor]

This was extremely boring and about nothing. I mean some interesting bits, but overall blegh. I had discussions with Slatman who didn't understand why people objected to CBT/GET because cancer patients also get CBT and you don't hear them complain etc. Reading this article she seemed to have gotten it now. Kind of.

 

[Hutan]

I've only read a bit, but I've found it interesting. The perspective of someone who seems to be coming from outside the debate could be helpful, even if they haven't properly understood some things. For example this:

Moreover, in using the term ‘multisystem illness’ (NRC, 10 April 2018), a group of patient representatives seem to agree with a multi-causal interpretation of the condition.

Using broad terms like ‘bio-psycho-social problem’ or ‘multisystem illness’ can be interpreted as a discursive strategy of narrative validation in order to establish legitimacy for one’s position (Greco Citation2012). That is, in using such terms, various polarized standpoints regarding what the etiology of ME/CFS encompasses – whether it is physical and/or psychological and/or social – seem to be accommodated and validated. These umbrella terms, then, appear to be neutral and as such, a viable option for creating a common language for a contested illness. In other words, a term like ‘multisystem illness’ legitimizes itself as a credible understanding of the condition by being very broad and thus seemingly neutral (Greco Citation2012).

I bet a lot of the patient representatives who use 'multi-system' don't realise that people are interpreting it as equivalent to bio-psycho-social. It's a term I don't like due to its vagueness - multi-symptom is a better representation. I wish advocates stop using 'multi-system' - it doesn't make ME/CFS sound more severe and consequential, which is what I think the aim is of its use. It's a bit better than complex, but still has the same problem.

 

[Hutan]

Thanks for talking to Slatman, @Grigor, I'm sure you helped move her towards a better understanding.

The second kind of injustice pertains to the situation in which someone speaks on behalf of a group or individual without their consent. While the reporting about ME/CFS is dominated by researchers and clinicians, this may indeed result in speaking in the place of (their) patients – uttering what they want and need – without them being given a platform to speak for themselves.

In any case, whether it is pre-emptive testimonial injustice or self-appointed speaking-for, or both, in this biased reporting, people with ME/CFS seem to suffer from testimonial quieting (Dotson Citation2011) as they do not seem to be understood as (credible, worthy-to-be-solicited) knowers to begin with.

Within these articles wherein people with ME/CFS share first-hand accounts of their illness experiences, we identified four kinds of dominant portrayals of people with ME/CFS, namely as (A) gendered, (B) (not) affectatious, (C) formerly very able, and (D) fanatical.

That is, there is an asymmetry in the traits attributed to women and men with ME/CFS. Women are typically introduced in the articles as ‘patients’ (Trouw, 29 August 2014; Trouw, 29 May 2015; AD, 28 June 2016) whereas men are called ‘expert patient’ (Trouw, 28 March 2018) or referred to as both ‘patient’ and ‘physician’ (Volkskrant, 30 September 2017). Here, the credibility of women with ME/CFS is obviously at stake. While women are merely called ‘patients’, men are assigned the epistemically superior status of ‘expert’ or are implicitly presented as having expert medical knowledge.

I thought that point was interesting. It's an argument for the use of the term 'people with ME/CFS' rather than patient. Where we can we should provide more positive descriptions e.g. advocate. It reminds me of the way BPS proponents diminished David Tuller's status by using 'activist' rather than something like 'academic'.

 

[Hutan]

And I thought this bit accurately conveyed the excruciating pressure to present oneself, especially as a representative of a disabled community, just right:

Moreover, ill women are stereotypically presented as ‘beautiful, young’ (Trouw, 29 August 2014), ‘desperately wanting [but being unable] to do groceries’ (Trouw, 29 May 2015), and as having a positive attitude despite the severity of their condition. One article, for example, quotes a woman with ME/CFS:

Chances are that I end up in a wheelchair, but even then, I can have as much fun as I have now. (Trouw, 29 August 2014)

These kinds of stereotypical portrayals seem to be particularly geared towards being granting credibility for a contested condition as a woman. Indeed, Werner and Malterud (Citation2003) suggests that working towards being perceived as having a real illness is a thoroughly gendered ordeal. For women, it typically involves delicately portraying themselves as feminine and as neither too ill or weak nor too healthy or strong (see also: Groenevelt Citation2021). In this case, this means that women are described as living up to a feminine ideal – beautiful, young, caring, domestic – whilst narrating that their debilitating – potentially wheelchair bound – condition will not disarrange their lives (too much). In doing so, these depictions of women seem to negotiate a convincing establishment of the debilitating nature of the condition, without the portrayed women appearing too weak as women (Werner Citation2003). After all, when a woman is being portrayed as (too) weak, they run the risk of their condition being ridiculed as part of women’s ‘hysterical’ and ‘sickly’ body and nature – a historically rich (and arguably persistent) cultural tradition (Johannisson Citation2001).

And it was notable that BPS proponents describing people with ME/CFS who are vocal in extremely negative terms was not missed by these commentators:

framing people as fanatical has severe epistemological consequences. In this case, ‘fanatical’ people with ME/CFS are implicitly ascribed with various kinds of ‘non-reason’ and other non-virtuous characteristics, and as such, are negatively stereotyped and disqualified as less- or non-credible knowers. Even more, by portraying them as fanatical while referencing Sontag’s (alleged) statement that the profile of ME/CFS ‘misfits’ the fanaticism of sufferers, the writer also seems to infer that the severity of the condition itself is questionable.

Similar to Reyes’ (Citation2011) observation, our analysis shows that some actors seem to attempt to establish the legitimacy of their positive positioning towards psycho-/behaviorial treatments while presenting themselves as benevolent. Conversely, other actors seem to try to undercut the credibility of such a positive positioning by negatively stereotyping (groups of) people who promote these kinds of treatments.

My take on all this is that saying that the cause of ME/CFS is not yet known, but expressing certainty that the cause will be known in the future is the best approach for us, along with mentioning the credibility of the people working on the problem, is better than trying to say it definitely is physical and talking about a multi-systemic illness. The latter approach just opens the door for counter argument. So, ensuring the credibility of the researchers working on the problem, and the clinicians providing care is important.

Some argue that it originates in the somatic body – for example in the brain or the immune system – while others point to a particular psychological disposition as a causal explanation – for example, that of negative affectivity. Yet others define this condition as being caused by multiple but often still distinguishable bodily, psychological, and/or behavioral aspects. It seems that in clearly demarcating their causal explanations, these actors try to establish credibility for their truth claims.

Despite this provision of clarity and demarcation, however, ME/CFS is still surrounded with persistent etiological uncertainty – something that many actors in the debate seem to (implicitly or explicitly) acknowledge. Such uncertainty, then, seems to seep into their demarcated explanations about the condition. That is, it surfaces in the multi-interpretability of multi-causal explanations of ME/CFS, in a diffusely demarcated single somatic or psychological cause, and in the latent future (and thus currently absent) knowledge about its somatic cause. Since a clear demarcation of causes is understood as a discursive strategy to establish credibility for their epistemic position, the infusion of uncertainty in their position obviously undercuts their credibility.

 

[Grigor]

I've only read a bit, but I've found it interesting. The perspective of someone who seems to be coming from outside the debate could be helpful, even if they haven't properly understood some things. For example this:


I bet a lot of the patient representatives who use 'multi-system' don't realise that people are interpreting it as equivalent to bio-psycho-social. It's a term I don't like due to its vagueness - multi-symptom is a better representation. I wish advocates stop using 'multi-system' - it doesn't make ME/CFS sound more severe and consequential, which is what I think the aim is of its use. It's a bit better than complex, but still has the same problem.

The Dutch Health Council 2018 labeled ME just like the IOM report as a multi-systemic disease. This article didn't mention this fact, but that's the reason why it understandably was used. Regardless if it is a correct discription It was the new "official" discription of "ME/CVS". Omitting that fact feels misleading to me.

There are also good bits as you quoted above, but overall I wasn't really impressed but maybe I'm biased due to the previous MUPS talk by Slatman.

 

[Grigor]

Here's an interview with her around the same time:

https://www.trouw.nl/nieuws/chronisch-vermoeid-en-fel-tegen-therapie~bffc3a3f/

 

[Sean]

My take on all this is that saying that the cause of ME/CFS is not yet known, but expressing certainty that the cause will be known in the future is the best approach for us,...

Only if methodological rigour is compulsory. Otherwise this shitfest continues on.

 

[Hutan]

Only if methodological rigour is compulsory. Otherwise this shitfest continues on.

Well, we don't really need everyone onboard with good science. We just need a few to make the breakthrough, and quite a lot more to champion it. And then the people tied up in their own world views will be irrelevant. But sure, in the meantime I'm all for doing what we can to build systems that make methodological rigour the expectation.

 

[Obermann]

Moreover, in using the term ‘multisystem illness’ (NRC, 10 April 2018), a group of patient representatives seem to agree with a multi-causal interpretation of the condition.

I think the authors have misunderstood the term “multisystem illness”. It is not a strictly medical term but is used in the IOM/NAM report to characterize ME/CFS (“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”). The report makes no strong claims about the aetiology and pathogenesis of ME/CFS but suggests that multiple organ systems are affected, a proposition that is supported by many papers demonstrating differences between patients and controls in measurable biological parameters on a group level. As there is no understanding of the underlying cause(s) to these observations, I think it is wrong to say that “multisystem” implies “multi-causal”.

 

[Jonathan Edwards]

By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position.

Hm. I think more likely:

By discussing something you have read about but do not have the common sense or background knowledge to really know much about and using complicated fashionable words from academic disciplines that have nothing better to do, you end up looking pretty silly to the people that matter in the case.

The authors have picked up some of the dynamics it seems, but talking about social dynamics like this without any sense of who is really right or wrong is just phoney to me. Physicist do not discuss the fact that some people think the earth is flat and others that it is round as if it didn't matter which. When such discussion is applied to emotive human interactions that include callous selfishness, stupidity and desperation it is unsavoury. Psychovoyeurism, basically.

 

[Hutan]

I think the authors have misunderstood the term “multisystem illness”.

I think you are right, that multi-causal was not how 'multi-system' was meant, but 'multi-system' is another vague term, along with 'complex' and 'holistic' that invites each reader to apply their own meaning. We don't need to give scope for multiple interpretations when we are describing the illness in a sentence or a paragraph. We could just talk about the key symptoms and give examples of the severity if we want to explain how debilitating it is.

Most significant diseases could be described as multi-systemic, but they generally aren't, because people don't need to use that word to convey 'this is an impactful disease'.

suggests that multiple organ systems are affected, a proposition that is supported by many papers demonstrating differences between patients and controls in measurable biological parameters on a group level.

Sadly, I really don't think the evidence is yet strong enough for anything but CPET outcomes, and even then things are not entirely solid. If you can, please do set up a thread to list the multiple organ systems affected with the (ideally replicated) papers you would cite to support their involvement in the disease. Mostly, I think there will either be the only paper on the finding, or there will be papers that report opposite outcomes for the finding.

 

[Hutan]

The authors have picked up some of the dynamics it seems, but talking about social dynamics like this without any sense of who is really right or wrong is just phoney to me. Physicist do not discuss the fact that some people think the earth is flat and others that it is round as if it didn't matter which. When such discussion is applied to emotive human interactions that include callous selfishness, stupidity and desperation it is unsavoury. Psychovoyeurism, basically.

I understand your point, even agree with it a bit. But I think it is valid to look at the methods of getting messages across - for example, demonisation and discrediting of people opposed to one's views; stereotyping - and assess how effective they are. It can contribute to people being more aware of the techniques used to manipulate public opinion.

We routinely see a lot worse papers than this. I thought the paper itself was significantly better than its abstract.

(Sorry, edited a bit to say things more clearly.)

 

[Trish]

By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position.

I haven't got any further than the abstract. Can anyone translate this sentence into plain English? Do they mean 'contribute' rather than 'attribute'? And why do they suggest people are disregarding their own position?

 

[Arvo]

Analysing who gets listened to and assigned authority and credibility (and why/how), and how people are positioned/stigmatized in reporting on a "controversial" topic involving marginalised groups while vested interest are involved is very important.
Understanding how exactly epistemic injustice and science denial works (so beyond these things as abstract terms) matters a lot, as it helps you see these things elaborately at work within the ME "debate".

Spoiler: Dutch newspapers' habit of platforming psychosomatic proponents and an example of active stigmatization of patients by using racism

Dutch newspapers have a long history of platforming CBT/psychosomatic proponents as a voice of reason and authority while patients get subtly or not so subtly stigmatised and patronised if they get "heard" in the article. (For example the 00s there was a huge round of this because the government wanted to re-assess all people on disability benefits - stigmatising ME and everything parked under MUS helped to make it acceptable to take their incapacity benefits away, as patients were not really sick but "somatizing" psychological stuff.)

In one instance a newspaper, in a particularly nasty piece featuring Bleijenberg, even drove the message home by actively using medical misogyny and racism as a finale to get the point across that these people "need to be maximally stimulated to not attribute their complaints to physical ailments but to behaviour, overburdening and stress": They used a GP's female moroccan-dutch patient (undoubtedly without her permission), who spoke dutch poorly, as an example: she got massively stigmatised by using her "fat medical dossier", several hospitalisations for abdominal pain, operations, and her request to the GP to please come for a visit as her abdominal pain got intolerable (so demanding!) as somehow signs that she was a hypochondriac. Her poor dutch is reinacted and used to stigmatise her further: When the patronising asshole that is her GP tries to convince her that her "complaints" probably have to do with her psychological and social situation when she calls him for help the newspaper produces what is the last sentence of the artice "No no, she answers decidedly, 'Belly sick, head not sick".

It still makes my blood boil - the article itself, but also that this has been (and still is) accepted. Only this March another newspaper wrote a MUS piece using a quote on MUS as a title and prominent advertising text: "Most people don't want to be sick, some do." (bolding theirs)

Anyway, yay for the topic, but nay for the abstract, because holy shit. If the article is actually any good it's disappointing that the authors made such a jargoney, unreadable mess of their abstract. (I've now seen several articles stemming from sociology or in this case "culture studies" that use fluffy, jargon-laden cotton candy language to create an unreadable and superficial-sounding text. Incredibly counter-productive and it looks like they're hiding a lack of substance, even when they might not be.)

I'm now slightly worried that they will "both sides" the situation, but I I've yet to read the rest. (I put it on The Pile of things I still want to read/do)

 

[Jonathan Edwards]

And why do they suggest people are disregarding their own position?

I think disregarding one's own epistemological position means forgetting the fact that one doesn't know what one is talking about. Although the authors may have forgotten that too.

 

[Arvo]

I haven't got any further than the abstract. Can anyone translate this sentence into plain English? Do they mean 'contribute' rather than 'attribute'? And why do they suggest people are disregarding their own position?

What, you've never mobilized your insights?

An initial stab at editing would be: Using insights gained from studies in social epistemology and epistemic injustice, we've analysed how people contributing to news articles use social diversion (?) as a tool. We've found contributors establishing and sustaining their own authority as knowledge-holder this way, while disregarding that of others.

(Or, more shortly: Using insights gained from studies in social epistemology and epistemic injustice, we've analysed how people contributing to news articles establish and sustain their own authority as knowledge-holder while disregarding that of others.)


Edited to add: It's indeed an example of how poorly edited the abstract is and I couldn't resist taking a stab at cleaning it up. Good practise.