Producing ME/CFS in Dutch Newspapers. A Social-Discursive Analysis About Non/credibility

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.

KEYWORDS:

• ME/CFS; credibility deficits
• epistemic injustice
• discourse analysis

1. Introduction

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is surrounded with both scientific and clinical uncertainty. Debates revolve around basic diagnostic and etiological questions. In the absence of a clear pathogenesis, researchers, practitioners, opinion makers, and people with ME/CFS and their representatives have been engaged in debates about what ME/CFS’s symptoms are (Ware 1992; Wessely, Hotopf, and Sharpe 1998); whether its cause is physical and/or psychological (Newbigging and Ridley 2018), what kind of people fall ill, and which treatment is most effective (Byrne 2020). Within these discussions, for example, both patients and clinicians agree that post-exertional malaise is part of ME/CFS’ symptomatic appearance, but there are disputes about the centrality of fatigue within this malaise, whether it is triggered by viral infections (Komaroff and Bateman 2020), lifestyle or both, and what kind of rehabilitative strategy would be appropriate – physical exercise, psychological therapy, or medication (de Boer 2021; Hunt, Blease, and Geraghty 2022). This paper analyzes these debates about ME/CFS and examines how knowledge about this condition is produced within these debates.

To some extent, scientific uncertainties always play a role in understanding and treating a disease because science is never finished. But for people suffering from ME/CFS, these uncertainties have direct implications for how they are viewed as a person and a patient. Because there is no clarity about the symptomatic appearance and the underlying cause, the condition is not always recognized as a disease. Consequently, people are sometimes not taken seriously, or even dismissed as posers. Several scholars show that in the context of ME/CFS, there are considerable tensions between people with ME/CFS and health care professionals who question the experiences of their patients, even the existence of the illness (Anderson 2012; Blease, Carel, and Geraghty 2017; Hunt, Blease, and Geraghty 2022). Given these credibility issues, people with ME/CFS may be less likely to qualify for sickness benefits (Dumit 2006; Newbigging and Ridley 2018; Porter 1987; Sharpe and Greco 2019). The analysis of knowledge about ME/CFS therefore involves more than just its construction: it is also about recognition (Lian and Bondevik 2015).

The discussion in Dutch newspapers in the period 2013–2018 represents a critical exemplar of the debate about ME/CFS. Herein, not only a diverse range of actors – people with ME/CFS, health care professionals, policy makers, opinion makers, and of course, journalists – constructed knowledge about ME/CFS, but the societal recognition of this condition was also explicitly at stake. In 2013, dissatisfaction with a Dutch Health Council advice about ME/CFS as well as with the scientific, clinical and political (non-)dealings with ME/CFS in general led to the citizen initiative ‘Recognize ME’.¹ 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.

In doing so, this paper uses insights of social epistemological studies in general, and it mobilizes the concept of epistemic injustice to serve as a theoretical lens for the empirical analysis. Social epistemology departs from the assumption that knowledge is not constructed in a vacuum, but rather within and through social dynamics (Anderson 2012; Mason 2021). The concept of epistemic injustice, then, helps to reveal how certain people are morally wronged in their capacity as knowers (Fricker 2007; Warman 2021). As such, social epistemology and epistemic injustice studies can help us to empirically analyze knowledge construction and (mis)recognition in the 2013–2018 discussion about ME/CFS in Dutch newspapers. That is, this theoretical frame helps to reveal how actors, through their social-discursive practices and strategies, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position (Anderson 2012; Fricker 2007; Kidd and Carel 2017; Maitra 2010; Mason 2021; Sherman 2016).

This article has a three-fold structure: (1) it provides a theoretical framework on the basis of theories about the social dimension in epistemic injustice in the context of ME/CFS, (2) it introduces the analyzed case of reporting on ME/CFS in Dutch newspapers between 2013 and 2018 and introduces discourse analysis as a fitting methodological approach to analyze these reports on ME/CFS, and (3) it presents the results of this analysis. In the final section of this paper, then, we discuss our findings in relation to studies on ME/CFS.

2. Theoretical Framework: Producing Knowledge About ME/CFS in a Social Context

ME/CFS poses many epistemic challenges because there is profound disagreement on what constitutes the cause and nature of ME/CFS, and on how it should be treated, even if it exists at all. The contested nature of this condition leads, for example, to a (sometimes fierce) battle between clinicians, scientists, patients and patient representatives over what causes ME/CFS and what are the best treatments options (Kidd and Carel 2017). In the midst of this battle, then, the role of social power, of historicized epistemic privileges, and of cultural representations of knowers in relation to being granted credibility is arguably large (Byrne 2020; Lee 2011; Greco 2012).

Given that the production and construction of knowledge is inherently social, knowledge construction also has a fundamental ethical dimension. After all, at the heart of epistemic questions about who is heard and who is not, what knowledge is considered credible, and what kind of epistemic status is attributed to a certain actor lie concerns about the marginalization of certain groups and their un/just exclusion in knowledge construction settings (Newbigging and Ridley 2018). In theorizing this epistemic-ethical dimension, Fricker (2007) coined the concept ‘epistemic injustice’. This injustice amounts to ‘a wrong done to someone in their capacity as [a] knower’ (Fricker 2007, 1). Fricker distinguishes two kinds of injustices: testimonial and hermeneutical, both of which originate in social identity prejudices. That is, testimonial injustice emerges when someone is deprived of her/his/their credibility because of unfair identity prejudices (Fricker 2007) - for example when ill people’s testimonies are dismissed because of being negatively stereotyped for being ill (Byrne 2020; de Boer 2021). In hermeneutic injustice, then, a person is not able to express and give meaning to their experiences because the interpretative sources available to them are lacking as a result of structural identity prejudices (Anderson 2012; de Boer 2021; Fricker 2007; Maitra 2010). While these injustices may be theoretically distinguished, they are often interrelated in practice (Dotson 2012). Being dismissed as less- or non-credible may result in being excluded from sharing one’s illness story in, for example, newspapers. Such an exclusion, then, may lead to a lack of appropriate shared resources about one’s illness and, consequently, to people finding it hard to understand and communicate their subjective illness experiences. When this hermeneutic gap in resources is interpreted as correlating with an in/capacity of ill people as producers of knowledge, it may, in turn, decrease these people’s credibility and lead to testimonial injustice (Blease, Carel, and Geraghty 2017; Byrne 2020).

Recently, various researchers have claimed that patients who suffer from ME/CFS are particularly vulnerable to epistemic injustice in the clinical context (Kidd and Carel 2017, Byrne 2020). For example, when physicians stereotype ME/CFS patients as ‘heartsink patients’, which is often the case, their credibility is deflated due to negative stereotyping associated with this label (Byrne 2020). Moreover, when a patient does not receive an intelligible diagnosis, and this is often the case for people with ME/CFS, they are robbed from a hermeneutical device that could help them to make sense of their own situation (Blease, Carel, and Geraghty 2017; de Boer 2021).

Because the literature on epistemic injustice in healthcare issues focuses mainly on one-to-one encounters between (epistemic) actors, it is suggested that the concept of epistemic injustice could be enriched by insights from the field of social epistemology (Anderson 2012; Dotson 2011; Maitra 2010; Mason 2021; Sherman 2016; Steers-McCrum 2020). For indeed, a social epistemological perspective is needed to understand how power structures and other systemic social and linguistic barriers may deflate ill people’s credibility and stop ill persons from making sense of and sharing their experiences. Examples of such obstructions are the deeply rooted negative stereotypes about ill people in our culture (Anderson 2012), the typical, everyday socialization of understanding dysfunctions in somatic terms (de Boer 2021; Kidd and Carel 2017; Wardrope 2015), the systematic quieting of or speaking-for marginalized people (Dotson 2012; Steers-McCrum 2020), and the ways in which collective hermeneutical resources about, for example, ME/CFS are built up by concepts that are typically regarded as relational, such as chronicity, illness, contested, and heartsink (Byrne 2020; Mason 2021). In this paper, therefore, we use the concept of epistemic injustice in combination with social epistemological insights as a theoretical framework for our empirical analysis. Thus, instead of deepening the theoretical discussion, we use these concepts as heuristic tools in analyzing the discourse about ME/CFS in Dutch newspapers. In our analysis, we focus on the question how social structures play a role in the production of knowledge about ME/CFS in the discourse.

3. Context: ME/CFS in Dutch Newspapers

The discussion about ME/CFS in Dutch newspapers between 2013 and 2018 provides a critical exemplar of knowledge construction about this condition (de Boer 2021). During this time, an increasing number of articles about ME/CFS was published in the 5 biggest national newspapers in terms of readership (i.e. Volkskrant, NRC, Telegraaf, AD, Trouw) by various kinds of actors, including people with ME/CFS, patient representatives, practitioners, researchers, Health Council committee members, the Health Council director, a newspaper ombudsman, and of course journalists.²

This upheaval in reporting began around the 2013 citizen’s initiative ‘Recognize ME’ that was submitted to the Dutch House of Representatives by the ME-The Hague support group. In response to this initiative, the Minister of Health asked the Dutch Health Council for advice on how to respond to this initiative. In 2016, after consulting with various stakeholders (scientists, health professionals and patient organizations), the Health Council installed a ME/CFS advisory committee. This committee consisted of two patient representatives, scientists, and clinicians and delivered its report in 2018. The formation and workings of the committee created momentum for a discussion about this condition through newspaper reporting. The fact, moreover, that several Health Council committee members – i.e. a scientist-member and two patient representatives (of which one formulated a minority view) – started to discuss their polemic standpoints in newspapers was an additional impetus to intensify the debate about this condition.

Analyzing this debate is significant because it took place in a national media outlet, and as such has a potentially large impact on perceptions of and dealings with this condition. Moreover, its potential effectual force may also be traced back to the specificity of the outlet, namely newspapers. While in a society where social media proliferates, society, ‘old media’ such as traditionally paper-based newspapers are sometimes dismissed as having a decreased influence on our perceptions and worldviews, we observed that they are still (and perhaps, increasingly) impactful. That is, in sharing their headlines and full articles on their own – often frequently visited – websites, and encouraging readers to share excerpts of their articles on various social media platforms, newspapers serve large offline and online audiences (Boczkowski 2005; Curran 2010; Jang and Park 2016).

4. Methods

In analyzing the 2013–2018 discussion about ME/CFS in Dutch newspapers, this paper uses Critical Discourse Analysis (CDA). This kind of analysis understands discourses as a social practice and in doing so, focuses on the mutually constitutive relationship between language use and the production of knowledge and social power structures (Van Dijk 2001; Wodak 2001). That is, in using CDA, this paper aims to understand how newspaper articles about ME/CFS (re)produce knowledge about this condition while focusing on the importance of stereotyping, stigmas, privileges, inclusions and exclusions in this (re)production (Martínez-Ávila and Smiraglia 2013). More concretely, this paper sets out to identify the main themes related to knowledge production about ME/CFS in Dutch newspapers, investigate the discursive strategies that are used, and analyze the implications of these strategies and themes for the ways in which power structures are (re)produced (de Boer 2021; Sandelowski 1995; Wodak 2001). In assessing this knowledge production, this paper builds on a relevant literature about knowledge production, social discursive strategies and power structures (o.a. Anderson 2012; Blease, Carel, and Geraghty 2017; Byrne 2020; de Boer 2021; Fricker 2007; Reyes 2011).

This paper’s analysis includes articles about ME and/or CFS that are published in national newspapers in The Netherlands between January 2013 and December 2018. These articles are collected through the newspaper search engine ‘LexisNexis’ by using the Dutch search term ‘CVS OR ME OR “Chronisch* AND *moe*”’ [i.e. ‘CFS OR ME OR “Chronic* AND *fatigue*”’]. This resulted in the collection of 53 newspaper articles. The collected articles include in-depth interviews, human-interest articles, commentaries from journalists, opinion articles, submitted letters by readers, evaluations by an ombudsman, descriptive reports on the state-of-affairs, and brief announcements. See Appendix A/Table A1 for an overview of the included documents in the analysis.

After collecting the articles, we started the analysis by reading through the hundreds of included pages. We identified the various involved actors in the discussion and examined what kind of knowledge they share. First, we coded these articles while distinguishing various actors and the knowledge they offer. Examples of these codes are: ‘people with ME/CFS: experiential knowledge’; ‘patient representatives: ME/CFS as a somatic condition’; ‘Practitioners: value of psychogenic therapies’; ‘scientists: ME/CFS as a multisystem condition’; ‘Ombudsman: evaluating exclusion groups from newspaper reporting’; ‘Journalists: integrity Health Council committee’. The second analysis phase involved the identification of the different types of discursive practices. Examples of the identified discursive practices include: using a discourse of risk, employing narrative validation, and opting for gendered portrayals. Finally, in the last analysis phase, patterns across and within these themes and (sub-)genres were identified (Sandelowski 1995). Existing codes were re-coded as the understanding of connections between different themes and the used discursive strategies developed and progressed. Eventually, three main themes and various subthemes related to knowledge production about and recognition of ME/CFS were identified. These themes are:

1. Producing causes. This theme includes the debate about causes ME/CFS (See: 5.1). Herein, three epistemic positions are identified: A) explaining the not yet/un-explained, B) finding one cause, and C) finding multiple causes.

2. Producing treatments. This theme includes the debate about what an effective treatment for ME/CFS is (see 5.2). Herein, three epistemic positions are identified: A) resisting psycho-/behavioral treatment, B) promoting psycho-/behavioral treatment, and C) debating the legitimacy of the Health Council’s advice on psycho-/behavioral treatment.

3. Producing people with ME/CFS. As knowledge about ME/CFS also includes knowledge about who suffers from this condition, the last theme includes the portrayal of people with ME/CFS (See: 5.3). Four dominant portrayals of people with ME/CFS are identified, namely as (A) gendered, (B) (not) affectatious, (C) formerly very able, and as (D) fanatic.

5. Results

5.1 Producing Causes

In the analyzed newspaper articles about ME/CFS, debates surrounding the question about what causes this condition are central. From a medical perspective, insights in underlying causes help to find adequate treatments. For patients, in addition, an explanation for an illness can be important for several reasons: it helps to break down the stigma around the condition; it can be part of the meaning-making process of the illness – answering, for example, the question ‘why am I sick?’ -; and it may provide guidance in explaining the situation to others. A cause and a corresponding explanation can thus be conceived as important hermeneutic devices.

In the Dutch reporting on ME/CFS, various actors gave different ambiguous explanations about the illness. We identified three ways in which causes and explanations are brought into contention: A) explaining the not yet/un-explained, B) finding one cause, and C) finding multiple causes. Within these three positions, actors use various kinds of discursive practices through which they infer a relation between certain concepts in their understanding of ME/CFS (Mason 2021). In doing so, they establish themselves and their standpoint as legitimate and credible, namely by taking a position of epistemic privilege in establishing ME/CFS as a ‘yet-to-be-explained’ disease with a somatic cause (see A), making elementary truth claims through which ME/CFS comes to be conceptualized as either psychological or physical (see B), or using narrative validation in using concepts like ‘bio-psycho-social problem’ or ‘multisystem disease’ (see C). Such discursive strategies have implications for whether and how various involved actors in the debate about ME/CFS are deemed credible or not. In turn, their message about ME/CFS together with their (established) credibility arguably has (direct or indirect) repercussions for how people with ME/CFS are deemed as (even less) credible, and thus for their epistemically un/just positioning.

1. Explaining the not yet/un-explained – In many of the articles, various actors typify ME/CFS as ‘unexplained’ or ‘not understood’ (Trouw, 11 June 2017; Trouw, 29 May 2015; Volkskrant, 21 September 2017; Volkskrant, 15 August 2015), or as something that is yet-to-be explained – as a ‘puzzle’ or a ‘riddle’ (Trouw, 11 June 2017). Given the significance of explaining a disease, it is interesting to note that this characterization of ME/CFS as ‘unexplained’ does not seem to leave (most of) these actors in despair. Rather, many hold that the current lack of an explanation for the condition bears a promise, perhaps even an assurance, to find one in the future.

An interview about ME/CFS with a practitioner is telling:

The illness is not just demonstrated with a diagnostic test. But that does not mean that it is all between the ears. We just do not have the right test yet. (AD, 19 September 2016)

This practitioner seems to attempt to legitimize ME/CFS by arguing for a (yet-to-be-developed) test and an accompanying (yet-to-be-known) somatic cause despite holding that the condition’s etiology is still uncertain. This framing is indicative for the privilege attributed to two interrelated epistemic positions: that of possessing knowledge (in contrast to non-knowledge) and particularly of knowing of a somatic explanation for illnesses. That is, it seems that in our contemporary Western culture, we tend to think that not-knowing (in this case, a cause) constitutes taking a non- or less powerful position (Parviainen, Koski, and Torkkola 2021). In addition, physical symptoms and knowing a somatic cause for an illness is seen as having more social and political weight as they are perceived as more objective and more real in comparison to psychogenic ones (de Boer 2021; Sharpe and Greco 2019; Newbigging and Ridley 2018; Kirmayer 1984). It is interesting to note that the epistemic privileges of knowing and particularly of knowing a somatic cause is apparently so strong that even actors who contend that a condition is ‘unexplained’, take the position that the condition holds latent knowledge; that it is ‘yet to be’ explained as somatic.

• (B) Finding one cause – Some actors claim that they have found or know of one physical or one psychological cause. This focus on knowing a particular, demarcated cause can be interpreted, in general, as taking a position of epistemic privilege wherein one claims to possess knowledge (Parviainen, Koski, and Torkkola 2021). More concretely, it may be understood as a discursive strategy wherein one aims to provide clarity and increase understanding, and in doing so, tries to be (more) convincing and establish credibility (Lee 2011). The following excerpt is a typical example of this strategy. A researcher seems to assert a univocal psychological explanation for severe pain experiences in ME/CFS when she says:

One almost always finds a relationship between MUPS [Medically Unexplained Physical Symptoms. ME/CFS is understood to be a MUPS] and negative affectivity. People with this psychological disposition interpret everyday events in life more negative, and also get stressed more easily. (NRC, 14 October 2013)

In arguing for a demarcated psychological causation, the quoted actor makes an additional comment. She states that, apparently, people with ME/CFS have a ‘hypersensitive brain’ (NRC, 14 October 2013). Similarly to what this actor does, claims that resort to a particular psychological explanation typically also refer to the physical domain, in this case to the brain. As the status of the physical dimension of the brain is not univocal – sometimes it is seen as the somatic equivalent of psychological mechanisms, and sometimes as the cause or origin of psychological features – references to the brain can easily produce epistemic conceptual confusion.

Other actors explicitly argue for a physical explanation for ME/CFS. They explain that physiological processes in the brain cause chronic fatigue in ME/CFS (NRC, 26 September 2015), or they explicitly call ME/CFS ‘a brain disease’ (Trouw, 24 March 2018). One practitioner, furthermore, suggests that ME/CFS is caused by infection. He elaborates:

We know that the symptoms appear after a bad infection. You see a somewhat similar picture after burn-out or cancer. After that, the body is in a constant state of defense, like North Korea is now. Ever since the Americans and Japanese left, everybody in that country is armed to the teeth and waits until the enemy returns. A totally idiotic state. That is how you can also understand the body [in ME/CFS]. It stays in a fight mode against something that is not there anymore. (AD, 12 May 2019)

While this latter quote seems to point to a univocal physical-immunological cause, in explaining this causation through psychogenic comparisons and political and military metaphors, it becomes not only diffuse (Lee 2011), but also results in marginalization and stigmatization. That is, this actor compares ME/CFS’ reaction to an infection to a burn-out – a psychologically framed and highly stigmatized condition (Bianchi et al. 2016) - and he employs the slurring qualification of ‘idiotic’ when talking about ME/CFS bodies (Byrne 1997). By comparing ME/CFS bodies to the fight mode of a totalitarian dictatorship, moreover, he not only negatively stereotypes people with ME/CFS, but also, by using such military metaphors, implicitly marginalizes those who are/continue to be ill as ‘losing a war’, as ‘losers’ (Penson et al. 2004; also see: De Boer and Slatman 2014). Such metaphors and comparisons, then, may not only lead epistemic confusion and therefore to credibility deficits (Lee 2011). We could argue – by building on Mason’s work (2021) – that this actor’s comments encompass a specific kind of hermeneutic injustice, namely hermeneutic distortion. In his comments, the actor infers a relation between the phenomenon of ME/CFS and concepts like ‘burn-out’, ‘idiotic’, ‘state of defense’, ‘enemy’ and ‘fight mode’ – that, in turn, may indeed imply other concepts like ‘war’ and ‘losers’. In doing so, this actor stereotypes and stigmatizes people with ME/CFS not so much because of a plain hermeneutic gap – i.e. a lack of available hermeneutic resources – but because of a failure to conceptualize, and infer conceptual relations about the illness (i.e. ME/CFS) in a way that does not stigmatize those who suffer from it (Mason 2021).

• C) Finding multiple causes – Several actors in the reporting seem to understand ME/CFS as having multiple possible causes. For example, a practitioner qualifies this condition as a ‘bio-psycho-social problem’ (NRC, 31 January 2015) and a scientist-committee member explains that one ‘only get[s] a complete picture of the illness’ when one ‘look[s] at the contribution of physical and psychological factors’ (NRC, 24 March 2018). 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 2012). 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 2012).

However, in taking a closer look, these broad conceptualizations are multi-interpretable and, as such, far from neutral and uncontroversial. For example, in adhering to ‘disruptions […] of the immune system, metabolism, cardiovascular system, specific hormonal systems, and the central nervous system’ (NRC, 10 April 2018), the above-quoted patient representatives seem to understand ME/CFS as mainly involving the physical body. The referenced researcher, then, reacts by noting that ‘such a focus on the bodily side’ is ‘one-sided’ and that behavioral and psychological consequences of physical discomforts should be taken into account (NRC, 24 March 2018). Given that polemics surrounding the etiology of ME/CFS apparently persist in using broad terms, one may argue that, in this case, the strategy of narrative validation does not work and may even be counterproductive. That is, using broad terms may conversely open the door for more (polemic) interpretations of and debates about the term. Then, in arguably sustaining, perhaps even intensifying the polemic debate surrounding ME/CFS, the legitimacy of the illness does not seem to be established through narrative validation but rather to be undercut.

Rather than only taking into account the epistemically unjust consequences of framing ME/CFS in such broad terms, one may also consider that taking such an accommodating conceptual approach itself may be at risk of being a kind of epistemic injustice, namely ‘testimonial smothering’ (Dotson 2011). In such smothering, Dotson (2011) explains, one truncates ‘one’s own testimony in order to insure that the testimony contains only content for which one’s audience demonstrates testimonial competence’ (244). Broadly conceptualizing ME/CFS as a ‘multisystem disease’ may then be understood as anticipating the testimonial incompetence of the audience. This smothering becomes unjust when it involves a self-silencing. This happens when, for example, a person with ME/CFS frames their illness as multisystemic while feeling they cannot articulate the experiential dominance of psychological symptoms. These experiences after all are assumed to yield to the testimonial deficiency in their audience – in this case, that people with (alleged) psychological illnesses are not taken seriously or are stereotyped (Bianchi et al. 2016; Byrne 2020).

5.2 Producing Treatments

One of the most prevalent controversies in the discourse about ME/CFS revolves around the question what treatment is most effective and appropriate. While a range of possible treatments is named in the analyzed articles, these controversies mainly concern psychological-/behavioral therapies, namely ‘cognitive behavioral therapy’ (CBT) and ‘graded exercise therapy’ (GET).³ By helping to alter the thoughts and behaviors of people with ME/CFS, these therapies try to progressively engage them in physical activities (de Boer 2021).

Throughout the reporting, two dominant discursive practices through which actors attempt to establish credibility and legitimacy for their position about treatment are identified: (A) using a discourse of risk in resisting behavioral therapies and (B) characterizing oneself as benevolent in promoting such therapies. Note that after the publication of the 2018 Health Council report, the employed discursive practices in the reporting partly shifted. Rather than mainly attempting to establish one’s own credible position, the reporting then also (C) engaged in debating the legitimacy of the committee’s advice regarding treatment as well as the credibility of newspaper editors in the debate about treatment.

1. Resisting treatment – In vocalizing resistance about recommending and using psycho-behavioral therapies, various actors resorted to a so-called ‘discourse of risk’ wherein they foreshadow certain negative future scenarios. For example, one woman with ME/CFS claims that it is ‘dangerous to recommend this [behavioral] therapy’ (NRC, 31 March 2018). An interviewed cardiologist, moreover, elaborates on the danger that specifically GET poses:

Exercise therapy can turn out to be disastrous for severely ill people because they are being forced to step over their boundaries. The result is that they have a setback and sometimes even end up in a wheelchair. (AD, 28 September 2016)

While discourses of risk may appear to be neutral – based upon incidence statistics – in everyday use, they are often highly normative: they forecast bad futures that should be avoided by oneself and others. By using such a normative risk discourse, actors in the ME/CFS reporting seem to not only legitimize their resistance against therapy – after all, resisting therapy seems reasonable as it may lead to ‘disastrous’ futures – but also attempt to convince readers to take the same position. Indeed, delineating risks, as Reyes (2011) writes, may stir up fear and this ‘condition[s] and prepare[s] the audience to receive proposals and courses of actions. [Such] emotions skew the audience towards accepting and supporting the proposal of the […] actor, who has triggered the emotions in the first place’ (790).

• (B) Promoting treatment – Some actors promoted psycho-behavioral therapies. In doing so, people with ME/CFS and their partners often refer to their own positive experiences with these therapies.

For example, a partner of a woman with ME/CFS states:

My wife got her life back. We would like other patients with chronic fatigue syndrome to have the same experience. (NRC, 31 March 2018)

Moreover, a woman with ME/CFS says:

Staring at the computer screen [during the online behavioral therapy program] I got goosebumps. This was exactly what I had experienced at these years. […] Sometimes I want to shout from the roofs: this [therapy program] is the solution! That’s why I wrote a book. Not to advertise [myself], but to help others. (Telegraaf, 26 January 2013)

The above quotes can be interpreted in (at least) two ways. First of all, they can be understood as a way of building a community and/or as an expression of belonging to a marginalized group. This belonging, then, may result in a felt urgency to help this group: to provide them with knowledge by writing a book so that they can overcome (their) obstacles (easier). These quotes may thus point to an emancipatory movement wherein a sense of belonging helps to build activistic dispositions and activities. Second, the above quotes also show that some actors seem to use (eye-)witnessing accounts in establishing legitimacy for their positioning towards behavioral therapy. In such accounts, they implicitly employ arguments of the type: ‘I know because I’ve experienced it’ (Reyes 2011). It is significant to note that in sharing their positive witnessing accounts, these actors typically present themselves as benevolent or compassionate towards others. They wish others ‘to have the same experience’ or want ‘to help others’ by writing a book about their experiences. Such a benevolent presentation of oneself may further establish one’s legitimate positioning. Reyes (2011) argues that, indeed, ‘doing things for others, especially the poor, the innocent, the vulnerable, is well-perceived in our society and can help the process of justification. It presents the action [and positioning] as beneficial for a community and circumvents judgment about the selfishness of the speaker’ (801). In this case then, in narrating one’s good intentions for one’s patients or fellow sufferers, one may establish oneself as a credible, good person, and in doing so, one’s positive positioning towards recommending therapy may be questioned less, even be praised more.

• (C) Debating il/legitimate advice – Once the Health Council report on ME/CFS was published in March 2018, the debate about appropriate treatments also started to include a debate about the legitimacy of the Council’s advice and the credibility of the committee members, and, subsequently, the role of reporters in this debate about treatment. This debate was initiated by a scientist/practitioner member of the committee whose opinion was published in several newspapers.

In one article, he writes:

Scientific studies [since 2013], except for one study, show a positive effect of behavioral therapy for [treating] fatigue and [other] limitations. These studies […] are not described in the report of the Health Council. […] The advice [of the Health Council] alludes to the search for a compromise wherein the [arguably negative] opinion of some patients [and patient representatives, about treatment] is reconciled with the [arguably positive] results of scientific research [about treatment]. (NRC, 24 March 2018)

This practitioner/scientist member seems to argue that the Council’s advice was biased: it accommodated patient representatives’ negative opinions at the cost of including studies with positive scientific results. Several articles in various newspapers were published in reaction to his opinion. In one article, for example, a scientist questions the scientific integrity of the Health Council in general, and specifically the ability of the patient representative members to judge and evaluate scientific evidence in this ME/CFS advisory committee. She states:

You are not going to ask anti-vaxxers to judge the effectivity of vaccinations either. Science is not an opinion. Research has to comply to strict requirements. (NRC, 27 March 2018)

In another response article, then, a group of patient representatives stated that the quoted scientist/practitioner member is biased himself. They write:

He keeps silent that he is director of the Dutch Expertise Centre for Chronic Fatigue (NKCV) [and] this institute treats patients with […] a highly contested form of cognitive behavioral therapy the underlying hypothesis for which is definitely debunked by the Health Council. (NRC, 31 March 2018)

This kind of reporting involves negative stereotyping of both patient representatives and behavioral therapists: the latter group as secretive, antagonistic, possibly even ignorant, and the former group – in comparing them to anti-vaxxers – as fanatical, unreasonable, and misinformed (Capurro et al. 2018). Note that the potential impact of such negative stereotypes (on credibility deficits and epistemic injustices) is arguably larger for marginalized groups such as patients and their representatives than for epistemically more privileged groups such as practitioners (Byrne 2020; Carel and Kidd 2014).

It appears that in this case, however, that the alleged authority of practitioners does not entirely protect them against (potential) epistemic harms induced by them being negatively stereotyped. That is, after the publication of the articles about the legitimacy of the Council’s advisory committee and the credibility of its members, newspapers reported receiving many letters from readers. The ombudsman of one of the newspapers reported that they are all

critical about the articles […] about fatigue syndrome ME/CFS. The reproaches varied from ‘one-sided reporting’ to ‘low journalistic quality’. […] I do not share their plea to exclude actors like the NKCV [Dutch Expertise Centre for Chronic Fatigue] from the reporting. Scientists from this centre were the first in The Netherlands that took seriously the complaints of ME patients. That is not an argument to merely sail on their compass. Neither is there reason to totally ignore them. (Trouw, 6 April 2018)

This quote by the ombudsman arguably shows that in the published articles and the referenced submitted letters, practitioners’ credibility seems to be questioned to such an extent that exclusion from the reporting is presented as a debatable option. Within this reporting about what certain practitioners deem as viable treatment options, not only the journalists’ credibility in terms of reporting seems to be at stake, but also the epistemic authority of these quoted practitioners. This becomes clear when we consider that the reports wherein practitioners’ knowledge is presented is not only qualified as of ‘low quality’ and ‘one-sided’, but are also reason to argue that practitioners should be excluded from such reporting all together. In this debate, then, practitioners do not only seem to have a credibility problem – and potentially suffer from testimonial injustice – but their actual access to knowledge production settings such as newspaper reporting as a result of this credibility deficit seems to be under fire.

5.3 Producing People with ME/CFS

The analyzed newspaper articles predominantly printed articles by and interviews with researchers and practitioners about ME/CFS. This kind of tendency in reporting can be interpreted as possibly incorporating two interrelated kinds of injustice, namely Fricker and Jenkins’ (2017) pre-emptive testimonial injustice and what Steers-McCrum (2020) calls ‘self-appointed speaking-for’. The former kind of injustice pertains to the systematic ways in which certain (marginalized) groups are only quoted in interviews when their narrative aligns with the dominant, often stereotypical story about them. Such exclusion may then result in a limited number stories about those groups (Fricker and Jenkins 2017). When Dutch newspapers only occasionally print articles wherein people with ME/CFS are quoted and their stories are told on their own terms, pre-emptive testimonial injustice may be at the root of this tendency. 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. Note that Steers-McCrum points out that this kind of epistemic injustice does not necessarily originate in identity prejudice – as Fricker (2007) would argue – but may be in place because of another wrongdoing such as carelessness (Steers-McCrum 2020). 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 2011) as they do not seem to be understood as (credible, worthy-to-be-solicited) knowers to begin with.

Moreover, the occasional actual platform people with ME/CFS are given in newspapers may also be interpreted as interspersed with epistemic unjust elements. 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. While such representations of people with ME/CFS obviously form an integrate part of the (re)production of knowledge about this condition, they also have significant repercussions for how people with ME/CFS – and by extension, their condition – are produced as (non-)credible.

1. Gendered – Given that this condition is predominantly diagnosed in women (Valdez et al. 2019), it is not surprising that most articles describe and represent women’s illness experiences. We observed, however, that the ways in which these articles narrate those experiences is also gendered. 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.

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 (2003) 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 2021). 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 2003). 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 2001).

• B) (Not) affectatious – Most analyzed articles about ME/CFS generally follow a narrative of long-term dysfunction. Narrated debilitating symptoms vary from muscle pain, headaches, forgetfulness, difficulties with finding words, concentration problems, insomnia, inflammation, and arrhythmia. But the symptom that is described as most central is – as the name of the condition suggests – severe fatigue or exhaustion. These articles describe and picture people who cannot stand, let alone go outside (AD, 28 September 2016), and are accompanied with telling headlines such as ‘Exhausted after making a grocery list’ (Trouw, 29 May 2015) or ‘Going to the toilet is already a marathon’ (Volkskrant, 30 September 2017). Significantly, these narrations of severe exhaustion are typically followed by accounts of how this symptom is often not seen within sufferers’ lived context as an abnormal and pathological phenomenon. In response, people with ME/CFS fight being characterized as, for example, lazy and affectatious. In an interview with the headline ‘Always tired is not affectation’, a woman with ME/CFS discloses how people commonly react to her condition:

Tired? We are all tired sometimes, she needs to get some exercise. […] Tiredness is all too quickly associated with lazy. (Volkskrant, 26 September 2015)

This quote shows that fatigue may be characterized in everyday life as a non-pathological phenomenon, as something that ‘we are all’ experiencing ‘sometimes’ and that is simply resolved with a lifestyle choice – getting ‘some exercise’. Following Spencer and Carel (2021), this kind of characterization may be understood as an epistemic injustice; as ‘wrongful depathologization’. While depathologization – i.e. the interpretation of a certain behavior, characterization, or experience as no longer abnormal – is often interpreted as destigmatizing a marginalized ‘deviant’ group, Spencer and Carel (2021) argue that it may also involve social epistemically unjust aspects. In the context of the ME/CFS reporting, we may argue that the quoted woman experiences others to normalize her debilitating experience of (intense) fatigue. Her testimony of what it means to deal with ME/CFS is consequentially devalued: her experience is trivialized and not taken seriously as really debilitating. After all, ‘we are all [experiencing] it “sometimes” as well’. Such depathologization is not only wrongful because of this resulting credibility deficit, but may moreover lead to the domination of hermeneutic resources that do not appropriately represent ME/CFS, thereby making it hard for people with this condition to interpret and make sense of their experiences.

• (C) Formerly very able – Interestingly, while most of the featured people with ME/CFS are portrayed as currently (physically and/or mentally) unable, some are also described as formerly very able. One woman, for example, is introduced as ‘never ill’ before she got ME/CFS (AD, 28 September 2016), and one man is introduced as a former top athlete and (practicing) physician (Volkskrant, 30 September 2017). These portrayals may be interpreted as gearing towards averting the risk of depathologizing ME/CFS. Painting a stark contrast between formerly being very healthy and able and currently very ill and unable may function as a way to counter potential credibility deficits as well as enhancing the credibility of sufferers. That is, being portrayed as formerly very healthy and able seems to deflect a ‘blaming the victim’-trope – in this case, a trope such as ‘if you would have lived healthier, this wouldn’t have happened’ – while promoting a ‘credibility enhancing’-trope, such as ‘it can happen to the best of us’.

• (D) Fanatical – While featuring people with ME/CFS, many articles refer to their activism; to voicing their dissatisfaction and anger about the current sociocultural, political and medical misconstructions about and dealings (or non-dealings) with their condition. Most of these articles hold that ME/CFS is a serious, debilitating illness and that, as such, protests against the condition’s misconstructions are understandable. One article, however, seems to implicitly challenge the credibility of people with ME/CFS – and of their condition – while condemning their activism. This opinion article by a psychologist reads:

I remember the remark by American writer Susan Sontag that CFS is blessed with a forefront of patients, whose fanaticism misfits the profile of the condition. (NRC, 31 March 2018)

Even though the writer qualifies this remark as ‘a vile provocation’, he seems to continue with underscoring such fanaticism in people with ME/CFS and their representatives – thereby undercutting their credibility. He states that

Abroad […], a couple of talented scientists left the research field. They felt intimidated by wrathful phone calls from patient representatives about unwelcome research results. […] In our country [i.e. The Netherlands], the debate is more civilized. But also here, patient representatives are often dissatisfied with how professionals treat CFS patients. They had a severe critique of the 2013 [treatment] guideline by the Dutch GP association. They refused to mandate this guideline. (NRC, 31 March 2018)

Even though this psychologist does not utter the term ‘fanatic’ himself, it may be interpreted that he implicitly portrays people with ME/CFS as fanatics when he refers to them as ‘intimidating’, ‘wrathful’, ‘unwelcoming’, ‘critical’, ‘less or un-civilized’ and ‘refusing’. Note that while fanaticism may be operationalized in rather descriptive terms as a form of activism that questions and opposes a certain status quo (Toscano 2017), in practice, 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.

6. Conclusion

In this paper, we have provided an empirical analysis of Dutch newspaper discourse concerning ME/CFS that focuses on the question of how social-discursive structures may shape epistemic injustices, and which role they may play in addressing, fighting and resolving such ethical harms. Contrary to what one may expect in a discussion about ME/CFS, our analysis shows that the production of non-/credible knowledge about this condition does not predominantly revolve around the content of the provided knowledge, but rather around the ways in which people who offer truth claims – i.e. knowers – are represented. In the portrayal of people with ME/CFS as gendered, affectatious, formerly very able, or fanatical (see 5.3), we see how they as knowers – and by extension their condition – are constructed as non-/credible. These findings largely concord with Johannisson’s (2001) claim that women with ME/CFS seem to avoid the risk of being ridiculed for having a ‘hysterical’ condition while presenting themselves as neither too weak nor too strong. Ingrained cultural stereotypes of ill women appear to play a pivotal role in quests to be granted credibility, and by implication in fighting potential testimonial injustices. We see a similar dynamic when people with ME/CFS are presented as formerly very able. Such portrayals seem to adhere to tropes that may increase these people’s credibility or deflect credibility deficits, thereby arguably avoiding the risk of wrongful depathologization of a severely debilitating condition (Spencer and Carel 2021).

Moreover, in discussing and producing credible knowledge about treatments, the debate not only centers around the question of what appropriate treatments are – what the treatment consists of, what it does, whether it works and under what conditions – but also around the representation of people who narrate their standpoint about treatments. Similar to Reyes’ (2011) 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.

Yet when it comes to the debate about what causes ME/CFS, the production of non-/credible knowledge focuses on the content of claims and not on the representation of the knower. Actors who claim that ME/CFS has a single cause seem to attempt to provide epistemic clarity and be persuasive. Other actors explicitly opt for a multi-causal explanation, a standpoint that seems to validate itself as an apparently neutral, inclusive term. It is significant to note, however, that these attempts to establish a credible position in explaining ME/CFS can have a contradictory effect. They may indeed lead to credibility deficits and even to instances of epistemic injustice. For example, in explaining the single (psychological or somatic) cause of ME/CFS, actors implicitly refer to other kinds of (psychological or somatic) explanations, whereby the explanation arguable becomes diffuse, and thus creates epistemic confusion instead of clarity. Multi-causal explanations, furthermore, turn out to be multi-interpretable, thereby sustaining and even possibly intensifying controversies surrounding the etiology of ME/CFS.

These credibility deficits, so we argue, originate in a tension that characterizes the debate surrounding ME/CFS. Within the analyzed newspapers, the discussion about what causes ME/CFS is predominantly marked by offering clearly demarcated causal explanations. That is, in explaining ME/CFS, most actors point to particular aspects of the body, psyche, and behavior. 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.

Disclosure Statement

The first and second author of this paper disclose that they have no conflict of interest.

Data Availability Statement

The datasets generated and analyzed during the current study are not publicly available due to newspaper articles’ authorship rights.

Additional information

Funding

This work was supported by the Dutch Scientific Research Council under Grant number 277-20.008/2737 (PI: Jenny Slatman).

Notes on contributors

Marjolein Lotte de Boer

Marjolein Lotte de Boer is an Assistant Professor of Medical & Health Humanities in the department of Culture Studies at Tilburg University, The Netherlands. Her research mainly focuses on women’s experiences of illness and medicalization and on discourses surrounding these women’s experiences. Throughout her work, she combines empirical qualitative research with philosophical reflection. During her PhD project, she researched breast cancer experiences. During her first and second postdoc projects, she studied infertility treatment experiences and discourses, and ME/CFS discourses. De Boer is currently working on a research project ‘Bodies in transition. Making sense of menopause’ (2021-2024), which is funded by the Dutch Research Council (NWO).

Jenny Slatman

Jenny Slatman is Professor of Medical & Health Humanities in the department of Culture Studies at Tilburg University, the Netherlands. She has published widely on issues of embodiment in art, expression and contemporary medical practices. Her publications include a book-length philosophical study on the meaning of expression in the work of Merleau-Ponty: L’expression au-delà de la représentation. Sur l’aisthêsis et l’esthétique chez Merleau-Ponty (Paris, 2003), and the monograph Our Strange Body: Philosophical Reflections on Identity and Medical Interventions (Amsterdam-Chicago, 2014). In 2017 Slatman was awarded a 1.5 million euro grant from the Dutch Research Council (NWO) for her research project Mind the Body: Rethinking embodiment in healthcare (2017-2023).

Notes

1. Citizen’s initiative publicly accessible on: https://deziekteme.petities.nl/ (last retrieved 5-7-2021).

2. These newspapers cover virtually the whole segment of national Dutch newspapers in terms of political and religious color. While Dutch newspapers historically have a certain political/religious color (Volkskrant was a Catholic newspaper, NRC was a liberal one, De Telegraaf and AD are more mainstream/conservative/popularist, and Trouw is originally protestant), most of them currently serve and represent a much broader ideological and non-/religious readership.

3. Note that in the articles, these therapies are sometimes distinguished and sometimes grouped together under the umbrella term ‘(psycho-)behavioral therapies’.

Appendix A

Table A1. Chronological overview per newspaper of the analyzed articles (2013–2018).

Newspaper	Original title in Dutch	Translated title	Date
AD	Opnieuw onderzoek naar ‘zombieziekte’ ME	New research on ‘zombie-illness’ ME	18 May 2015
	Alles kan, jawel	Everything is possible, yes	19 May 2015
	Nederlanders zijn kampioen langslapen	Dutch people are champions of extended sleeping	9 May 2016
	‘Ik heb liever kanker dan ME’	‘I’d rather have cancer than ME’	28 September 2016
	YouTubers openhartig over hun burn-out: ‘Het lukt me gewoon niet’	YouTubers frank about their burn-out: ‘I just could not manage’	22 October 2018
Telegraaf	Ik heb mijn leven weer terug; ‘Ik leef’	I have my life back again: ‘I live’	26 January 2013
	‘Beetje bij beetje meer energie’	‘Bit by bit more energy’	19 December 2015
Volkskrant	‘Sta je open voor iets meer dan traditionele behandelingen, dan word je direct belasterd’	If you are open to a bit more than just traditional treatments, then you are immediately vilified	24 June 2013
	Ik heb altijd gelijk	I am always right	7 June 2013
	Gezondheidsraad: ‘Dé lymepatiënt bestaat niet’	Health Council: The Lyme patient does not exist	26 June 2013
	‘Het is veel comfortabeler om de oorzaak buiten jezelf te leggen’	‘It is much more comfortable to place the cause outside yourself’	1 August 2015
	Altijd moe zijn is geen aanstellerij	Always tired is not an affectation	26 September 2015
	Chronisch op zoek naar erkenning	Chronically searching for recognition	6 September 2016
	Nederland lijdt massaal aan modeziektes	Dutch people suffer en masse from hoax illnesses	8 April 2017
	Niet normaal	Not normal	13 April 2017
	‘Het is zó moeilijk voor te stellen dat ik er straks niet meer ben’	‘It is very hard to imagine that I will soon not be there anymore’	16 September 2017
	‘Onbegrepen klacht vergt persoonlijke aanpak’	‘Unexplained complaint requires personal approach’	21 September 2017
	Naar de wc is al een marathon	Going to the toilet is already a marathon	30 September 2017
	Chronisch vermoeidheidssyndroom ME is geen ‘yuppiegriep’	Chronic fatigue syndrome ME is not a ‘yuppie flu’	November 17, 2017
	Voormalig supermodel met een missie: ‘Alle artsen gaven me de verkeerde diagnose’	Former supermodel with a mission: ‘Physicians gave me a wrong diagnosis‘	26 October 2018
	Hoe een enge video HPV-vaccinatie-angst in Japan aanwakkerde en wat we daar in Nederland van kunnen leren	How a scary video stirred up HPV fears in Japan and what we can learn from that in The Netherlands	16 February 2018
NRC	Onverklaarbare klachten verklaard	Unexplained complaints explained	14 October 2013
	De snelweg naar burnout	The highway to burnout	29 March 2014
	Ziek, maar waarvan?	Ill, but from what?	31 January 2015
	Chronisch vermoeid Amsterdam	Chronically fatigued Amsterdam	2 March 2015
	Suiker, het heerlijke gevaar	Sugar, the delightful danger	13 June 2015
	Plots kon ik niet meer werken	Suddenly I could not work anymore	18 November 2015
	Studenten lijden onder keuzestress en prestatiedruk	Students suffer from choice stress and performance pressure	20 October 2016
	Opgebrand? Dat ligt dus niet alleen aan jou	Burnt out? It is not just your fault	21 October 2016
	Een debat dat blijft vermoeien	A debate that keeps being tiresome	22 October 2016
	Advies Gezondheidsraad over vermoeidheidsziekte ME/CVS is wel degelijk achterhaald	Advice Health Council about fatigue syndrome ME/CFS is indeed outdated	5 November 2016
	Vermoeidheidssyndroom	Fatigue syndrome	6 December 2016
	Gezondheidsraad ‘Neem patiënten met chronische vermoeidheid serieus’	Health Council: ‘take patients with chronic fatigue seriously’	20 March 2018
	ME is niet ‘puur lichamelijk’	ME is not ‘purely physical’	20 March 2018
	Gezondheidsraad uit frustratie in advies	Health Council expresses frustration in advice	27 March 2018
	Niet te meten uitputting	Unmeasurable exhaustion	31 March 2018
	Psychische factoren	Psychic factors	31 March 2018
	Therapie helpt	Therapy helps	31 March 2018
	Vier jaar bedlegerig	Bedridden for four years	31 March 2018
	ME-advies is wel degelijk helder en gebalanceerd	ME advice is indeed clear and balanced	10 April 2018
Trouw	Erkende of onbegrepen ziekte: lijden is even groot	Recognized or unexplained illness: suffering is just as big	29 May 2015
	Uitgeput na het maken van een boodschappenlijstje	Exhausted after making a grocery list	29 May 2015
	ME-patiënten ontevreden over behandeltherapieën	ME patients dissatisfied about treatments	14 September 2016
	De levenslessen van neuroloog Emile Keuter: ‘Een onbegrepen klacht is ook echt’	Life lessons from neurologist Emile Keuter: ‘an unexplained complaint is also real’	11 June 2017
	ME deels erkend als chronische ziekte	ME partly recognized as a chronic illness	20 March 2018
	ME-patiënt Francis Verreck	ME patient Francis Verreck	21 March 2018
	Tussen je oren zit je lijf	Between your ears is your body	24 March 2018
	Kwaliteit van leven, daar gaat het om bij een chronische aandoening	Quality of life, that is what it is all about in chronic conditions	27 March 2018
	Kenniscentrum zorgde voor mythe over vermoeidheidssyndroom	Expert institute caused mythical thinking about fatigue syndrome	28 March 2018
	Discussie over vermoeidheidssyndroom verdient meer journalistiek onderzoek	Discussion about fatigue syndrome deserves more journalistic research	6 April 2018
	Chronisch vermoeid en fel tegen therapie	Chronically fatigued and fiercely against therapy	7 April 2018
	Berichtgeving over ME had aan kracht gewonnen met het woord van de patiënt	Reporting about ME would have been more powerful with the voice of patients	13 April 2018