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

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&

 

What have I just been reading....

 

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.

 

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.

 

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

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

 

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”.

 

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.

 

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)

 

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.

 

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.