Recovering from chronic fatigue syndrome as an intra-active process

Abstract

In this article, we draw on the narrative of a woman who has recovered from chronic fatigue syndrome (CFS) to explore the process of recovering from a debilitating illness. Inspired by Julia Kristeva’s notion of the body as a complex biocultural fact and by Karen Barad’s posthuman theory (also termed agential realism), we adopt an intra-active approach to the woman’s recovery process, revealing the role played by human as well as nonhuman entities. In so doing, we move beyond “dualistic,” often polarized debates in the medical literature (and mainstream media) regarding the causes of CFS: debates in which “biological/physiological” factors tend to be set against “mental/cognitive/psychological” ones. We argue for a medical perspective in which the intra-action of human and nonhuman agents is recognized as contributing to an individual’s recovery process.

Background

Chronic fatigue syndrome (CFS) is regarded as a long-term illness characterized by ongoing fatigue which tends to intensify following both physical and mental activity (Clayton, 2015; Jason, Porter, et al., 2011; Pinxsterhuis et al., 2015). While there is currently no curative treatment for CFS, health professionals seek to alleviate major symptoms and strengthen patients’ ability to live with this ongoing condition (Directory of Health, 2015, p. 28; Pinxsterhuis, Strand, Stormorken, & Sveen, 2015).

There is currently much debate regarding the effectiveness of biomedical versus cognitive approaches to the treatment of CFS and patients’ recovery (Adamowicz, Caikauskaite, & Friedberg 2014; Brown, Bell, Jason, Christos, & Bell, 2012; Clayton, 2015; Directory of Health, 2015; Jason, Brown, et al., 2011; Jason, Porter, et al., 2011; Nijhof, Bleijenberg, Uiterwaal, Kimpen, & van de Putte, 2012; Pinxsterhuis, Strand, Stormorken, 2015; Saugestad, 2018). This debate stems from, and is triggered by, research as well as experience-based knowledge pointing to some individuals recovering from CFS to the extent that they regard themselves as healthy (Landmark et al., 2016; Price, Mitchell, & Tidy, 2008).

Another treatment approach, closely linked to cognitive behavioural therapy (CBT), is the lightening process (LP; Brosschot, Gerin, & Thayer, 2006; Landmark et al., 2016; Parker, 2007; Price et al., 2008; Reme, Archer, & Chalder, 2013 ). As with CBT, the focus here is on patients’ thoughts. However, practitioners of LP encourage patients to identify experiences that engender positive emotions, rather than identify negative thoughts and emotions (Landmark et al., 2016; Reme et al., 2013; Sandaunet & Salamonsen, 2012). To date, few researchers have explored the effectiveness of LP as an aid to recovery from CFS. However, there is evidence of patients reporting improved health and functioning following LP treatment. For example, in one study, seven of nine adolescents reported a significant improvement in their CFS following LP (Reme et al., 2013). In a more recent study, researchers found that participants reporting a positive impact from LP had higher scores on criteria such as “understanding one’s condition,” “feelings of confidence towards the course leader,” and “positive bodily response” than those reporting a negative impact from LP or no impact at all (Sandaunet & Salamonsen, 2012). On the basis of such studies, some researchers have concluded that LP may be beneficial for some patients with CFS (Landmark et al., 2016). However, LP and its effectiveness continue to be a matter of debate among medical experts, scholars, patients and patient organizations. At the root of the controversy is the notion that the positive effects associated with participating in LP are compatible with a mental explanation of CFS. Medical experts and patient organizations adhering to biomedical explanations for CFS have argued that reports of patients recovering from CFS following LP are simply untrue, since patients with CFS cannot be cured by cognitive means (Lian & Nettleton, 2015; Lian & Robson, 2017; Saugestad, 2018). We contend that this ongoing, polarized debate has been destructive, especially for patients striving to find a cure for their illness. Instead, we argue for a focus on patients’ experiences of recovery and treatment approaches, and on the results from different treatment approaches (Berge & Daehli, 2009, p. 10). It also bears emphasis that while some patients have reported recovering from CFS following LP, others have reported a worsening of their condition (Baumgarten-Austerheim, Salamonsen & Fønnebø, 2015; Fønnebø, Drageset, & Salamonsen, 2012).¹

In this article, we explore the issues by drawing on the narrative of “Nina,” a woman who has recovered from CFS (“Nina” is a fictive name, to protect the woman’s anonymity). We believe that enhanced understanding of such stories can help clinicians target their approaches to patients living with CFS. In order to deepen our understanding of individuals recovering from CFS, we draw on theories and approaches provided by researchers who in diverse ways offer possibilities to transcend current divisions regarding the origins and treatment of CFS.

The body as a complex biocultural fact

Our analysis of Nina’s recovery story has been influenced by the radical new approach to recovery proposed by the Bulgarian-French philosopher, semiotician and psychoanalyst Julia Kristeva. In a landmark paper cowritten with colleagues, Kristeva calls into question traditional distinctions between the “objectivity” of the natural sciences and the “subjectivity” of culture and the humanities (Kristeva, Moro, Ødemark, & Engebretsen, 2018). Using as their starting point the Roman myth of Cura, the goddess said to have created man out of a piece of clay, Kristeva and colleagues explore the myth’s allegorical dimensions, in particular the distinction drawn between “health” and “healing.” They argue that in the myth “health” is presented as a “definitive state” which belongs to biological life (“bios”), while “healing” is construed as a “process with twists and turns in time,” akin to the generalized life process (“zoë”).

On this basis, Kristeva and colleagues develop an alternative approach to care: one which acknowledges the healing powers of culture and sees the body as a complex biocultural fact (Kristeva et al., 2018). Their approach seeks to erase the cultural distinction between “the objectivity of science and the subjectivity of culture, the generality of the natural sciences and the singularity of the humanities” (Kristeva et al., 2018, p. 1). Discarding the notion that the humanities represent simply a “soft” add-on to the “hard facts” of biomedicine, they argue for an approach to care which acknowledges “the pathological and healing powers of culture” and understands the human body as “a complex biocultural fact” (Kristeva et al., 2018; p. 1).

Kristeva and colleagues draw on the concept of chronotype (unity of time and space) developed by the Russian philosopher and literary M. M. Bakhtin to argue that medical research and the practical art of care have traditionally been placed in different ontological domains: those of nature and culture (2018, p. 2). Such an ontological divide is only reinforced, they argue, by interventions such as that of the Lancet Commission (2014), which sought to draw attention to the impact of cultural values on health outcomes. Such instances, they argue, involve an attempt to provide more holistic understandings by introducing perspectives on medicine from the humanities – which are still seen as residing in a different ontological box. As a “product of the epistemological and ontological divisions that underpin the current organization of knowledge,” the humanities remain consigned to the cultural side of the nature–culture divide.

Arguing that “wholeness” cannot be achieved either by biomedicine or by the medical humanities in isolation, the authors position themselves within the second wave of medical humanities, where the humanities are understood as “deeply and irretrievable entangled in the vital, corporeal and physiological commitments of biomedicine” (Fitzgerald & Callard, 2016).

Kristeva and colleagues conclude that medical humanities should be regarded not as a humanistic perspective on medicine but rather as:

a cross-disciplinary and cross-cultural space for a bidirectional critical interrogation of both biomedicine (simplistic reductions of life to biology) and the humanities (simplistic reductions of suffering and health injustice to cultural relativism)… increased understanding and analysis of the body as a complex biocultural fact can also be a potential source of healing. (Kristeva et al., 2018, p. 2; original emphasis)

Recovery and agential realism (intra-action and agency)

A second source of inspiration for this article is Karen Barad’s theory of agential realism. Barad’s theory (2007) rests on the idea that not only humans but all entities have agency. As Højgaard and colleagues explain,

Agential denotes that everything “does” something, in other words, that everything is performative and has agency. Nothing is delimited as a separate entity. Everything is always engaging something else, in specific ways designated by the concepts; intra-activity, that is, matter and meaning, object and subject, nature and culture are all mutually articulated and mutually entangled. (Højgaard, Juelskjaer, & Søndergaard, 2012, p. 68)

Agency enables us to challenge or move beyond such notions as fixation linearity and the one-dimensionality of matter and materiality. Instead, we can emphasize performativity through intra-active processes across the distinctions by which we normally operate: for example, human/nonhuman, subject/object, and matter/discourse.

Barad sees an intra-active mode of thinking as a fruitful alternative to the linear, somewhat individualistic agential concept of interaction (Barad, 2007; Højgaard et al., 2012). While interaction assumes the existence, prior to their interaction, of separate individual agencies, intra-action recognizes at the agency emerges through intra-action (Barad, 2007, p. 33). Here, intra-action can be understood as an entangled phenomenon always in process (Juelskjaer, 2013, p. 756). From this perspective, we are able to explore recovery from CFS as a process of becoming. This is not a process involving separate, preexisting biological and mental elements. Instead, biological and mental processes are understood as dynamic and inseparable as a result of agential intra-action. In this way, they become the phenomenon of recovering from CFS. Regarding the key that sets the intra-active process in motion, we concur with Barad’s concept of apparatus as a form of boundary-making (Højgaard et al., 2012, p. 69). Barad argues that different apparatuses perform boundary-setting practices by way of agential cuts (Barad, 2007, p. 155). In addition, agential cuts in intra-actions produce phenomena, which are therefore already and always inherently relational (Juelskjaer, 2013, p. 757).

In our analysis of Nina’s story, we put Barad’s concepts into play by reframing the recovering process. We do so by reconceptualizing material aspects (biological) and cognitive aspects (mental) as our apparatus under scrutiny. For Barad, apparatuses are “specific material reconfigurations of the world that do not merely emerge in time but iteratively reconfigure spacetimemattering as part of the ongoing dynamism of becoming” (Barad, 2007, p. 142). This implies that although agential cuts are unique in each setting, the notion of spacetimemattering enables us to go beyond linear thinking of space, time and matter towards “ways to think about the nature of causality, agency, relationality, and change without taking these distinctions to be foundational or holding them in place” (Barad, 2012, p. 32). This rephrasing entails an intra-active analysis of the recovery process in which agential cuts are dependent on how the space of each concept/apparatus varies from one individual to another. In other words, there will be individual differences regarding the extent to which the component of biology (material aspects) and psychology (cognitive aspects) is prominent in the recovering process. However, this is not seen as a linear continuum where individual patients move forth and back between two poles. Rather the recovery process is seen as an entangled process in which material, cognitive and psychological elements cannot be separated. Concepts and material discursive reconfigurations of the world therefore become meaningful through agential cuts (Højgaard et al., 2012, p. 70). In our analysis of Nina’s story, what counts as meaningful in the recovery process is unique to the individual in question.

Method

In terms of methodology, our analysis of Nina’s recovery from CFS has been inspired by Barad’s (2007) concept of diffractive reading. We began by reading, intra-actively, Kristeva and colleagues’ radical approach to humanities and Barad’s agential realism; in other words we read the two texts through one another (Højgaard et al., 2012; Jackson & Mazzei, 2011). This made us aware of how the texts complemented and enriched each other. We then read Nina’s story through the lens of theoretical understanding that the first reading had brought to the fore.

Adopting a Baradian diffractive approach made it possible for us to allow some aspects to matter more than others (Højgaard et al., 2012). This had a particular bearing on our choice of research questions. Initially, we analyzed Nina’s story in relation to the following empirical research question: How does she make meaning of her recovery process? After that, we conducted a more detailed analysis, using a diffractive-narrative approach to develop Nina’s story (Zabrodska, Linnell, Laws, & Davies, 2011). In this phase of our analysis, we addressed the following research question: In what ways can our understanding of recovery from CFS be enriched by a radical approach to the humanities and by a Baradian agential realist approach?

In order to make our analysis transparent, we present our analysis in two stages: firstly, through the lens of the radical approach to the humanities offered by Kristeva et al. (2018) and, secondly, through the application of a Baradian approach (Barad, 2007).

This article draws on data from a larger study involving interviews with 15 women recovering from CFS. The study was approved by Norway’s Regional Ethics Board, and all participants gave their informed consent. Nina’s recovery story in many ways resembles the stories of the other participants, especially her experiences of LP and alternative medicine. Like other participants, too, Nina highlights a specific medical event – a vaccination – that seemed to constitute a turning point in her life. Despite these common features, however, it bears emphasis that every participant’s story is unique.

Nina’s story

Nina is in her thirties, married and the mother of three children. She describes herself as having always been an active, sociable woman. It was only during the period of her illness that this changed.

Nina’s story of becoming ill contains some typical characteristics. As a girl, she was sporty, and particularly keen on soccer. Then she was given the BCG vaccine. It turned out she had glandular fever at the time she was vaccinated. This was the start of a period in which she became very ill – although neither her school not the health system gave any credence to her sickness. It took years for her to get a diagnosis of CFS. Here is her story of how she recovered:

I got in contact with the CFS organization through the internet, but I soon learned how they “protected” their disease. They turned down every suggestion I made about things that might help me, because according to them there was only one thing that helped and that was rest. So I decided to break off contact with them because I thought, “This is not good for my mental health.”

Then a mother of a friend told of reading about herbal medicine and explained what she had learned …. I was super-skeptical but thought I had nothing to lose – I had to try and get healthy and well again. So, they [an herbal medicine practitioner and an acupuncturist] tested my blood. I was super-skeptical, and it was my mother who said, “We have to try this, we will pay, we want you to try this.”

Their blood test showed lots of misery. I was told to go to the pharmacy and buy medicine. And I went for acupuncture. At that time, being ill, I was freezing all the time, my hands and feet were ice-cold. In addition, my stomach was like a balloon. I had digestive problems, muscle pain, and headaches and was highly sensitive to sounds and smells. I did not tolerate anything, and everything was really bad…

But when I got home that day, after the acupuncture, I had to go straight to the toilet. I understood that something had happened to my body after that acupuncture appointment. And then I started on the herbal medicine. It was strictly organized and I had to follow a certain order, so I had a timetable which enabled me to organize what to take and when.

Then more things started to happen in my body. There was a change in my energy level. I did not see it so clearly myself, it was my family who saw that after I’d been for treatment I could do things I couldn’t before. The infections I’d suffered became less frequent, the pain in my muscles and my stomach problems also eased… I could do more things. I could do more and more. Still, I did not feel completely recovered. And I was deeply afraid of becoming very ill again.

So then, after hearing stories from people who had recovered after participating in Lightening Therapy, I decided to give it a go. One woman I met had been in a wheelchair because she’d been so ill. She thought she had nothing to lose so she tried it (and I thought, well now I shall see how this goes…) and she learned to build herself back again and become well. So then I thought I’d give it a go. At that time, I already felt much better – I no longer needed to stay in a darkened room most of the day, that part was already over– but I still lacked control over my muscles.

During the program, the therapists explained that when I got the BCG vaccine, on top of having glandular fever, and later had a flu vaccine, my body had begun stressing out. It got into survivor mode, producing adrenaline to fight back – and that adrenaline production has never ceased.

So every time I had thought “I’d like to go hiking in the mountains but it always makes me so unwell,” my adrenal glands had received a signal from the brain saying “ok, here we need to produce more (adrenaline), so the body never got a chance to rest”

The therapists [in the Lightening Program] explained how my body was in survival mode, and that I could end this myself. I had to stop it through my thinking; I had to change my thinking. I needed to think “There’s no reason why I and my body should be so afraid.”

So, I had to learn this way of thinking, of being aware what I was thinking. For example, although I wasn’t negative about going hiking in the mountains, my body reacted against it at once.

It was like, for example, being in a room where a projector was making a racket. Please switch it off: that noise is giving me a terrible headache. So, it’s like STOP. Now you must THINK, [get to your feet and trace a circle on the floor in front of you]. Every time I started to feel afraid or think in terms of my own sickness, I told myself to STOP.

To start off with, I went (physically) out of the situation and said “stop.” But after a while I put this into my own language. I told myself: “I am not going back to CFS; I am going to have a life that I love.” Then I’d remember how it was to be completely healthy and, well, you go into that situation, imagining how it is, the feeling [in your body], the smell…. And then that bad feeling, and the fear of failing to recover, just seemed to melt away. I stopped that train of thought, and I no longer needed to walk in a circle… It sounds silly, it sounds so simple, but I did this the whole time…

Then there was a sudden change, and it was very strange. After that, I was healthy and well… I think it was the combination of LP and alternative medicine, including two years of acupuncture and herbal medicine. I got rid of all the misery that was part of my body. But I still needed to strengthen my body and muscles… So now I focus on keeping it going.

But if I get the flu I get a bit panicky, because flu has many of the same symptoms [as CFS] and I become very frightened about getting ill again, of being reclaimed by ME. So, I use the techniques I learned in LP. I say “stop.”

Nina and her recovery process read through Kristeva and colleagues’ rethinking of the medical humanities

One thread running through Nina’s recovery story is her experience of a relationship between her material/physical body and her thinking (cognition). Nina tends to express herself through a language where the pathological and healing powers of culture are split into separate parts. There is, one could argue, a distinction between the objectivity of science and the subjectivity of culture. Interestingly, Nina’s use of herbal/alternative medicine is explained by a rationale similar to that of medical science; it comes about from taking blood tests. Nina looks for pathological explanations to account for the effects of the alternative medicine. In short, there continues to be a divide between what is seen as pathology and what is seen as healing. Here we would argue that Nina’s experiences are embedded in a way of thinking that still distinguishes between subjective and objective aspects of the healing process.

But also running through Nina’s recovery story is a thread in which she expresses her experience of her body as a complex biocultural fact. An example is when Nina tells of the acupuncture resulting in a bodily response and her need to run to the toilet. This anecdote can be read as a corporeal entangled experience, enabling us to get a more holistic understanding of Nina’s body and recovery process. This is in line with Kristeva and colleagues’ claim that entanglement involves more than the application of perspectives drawn from the humanities to medicine (Kristeva et al., 2018, p. 2). In this context, Nina’s story demonstrates how an understanding of the body as a complex biocultural fact can also be a potential source of healing.

Encountering Nina and her recovery process through barad’s agential realism

As discussed earlier, Barad has offered us a radical new way of understanding agency. Adopting her theoretical stance, with its emphasis in the intra-action of human and nonhuman agency, (Barad, 2007) enables us to explore additional ways of understanding Nina’s process of recovery. More precisely, we now explore her recovery process as an intra-active process of becoming.

When Nina starts her recovery process, she herself doubts that rest (the “advice” from the CFS organization) is the right thing to do. While emphasizing her skepticism towards alternative medicine, she still decides it is worth a try; after all, she probably has nothing to lose by trying it. She then tells of significant bodily (material) responses, which work by mechanisms familiar to academic medicine. But as alternative medicine is seen as a predominantly cultural approach, we can argue, using Kristeva and colleagues’ line of argument, that the human body now becomes a biocultural fact. However, when Nina enters the Lightening Program, she and LP start to intra-act. As she adopts the thinking and doing/acting recommended by her LP therapists, she embodies a new way of approaching her fear: that of changing her focus.

At the start this is marked by a bodily performed circle: Nina needs to perform an action or exercise to connect her thinking (cognition) to her bodily responses. As she progresses, however, she no longer needs to perform a physical act to get a bodily response (in her case, a reduction in stress). After a while Nina is able to juggle all these manoeuvers by changing her thoughts. She and the program intra-act in various ways. In addition, there is intra-action between Nina and her fellow LP group members during the intensive course. Periodically, she relates her story to others who have recovered from CFS. By looking at others to see how they are doing compared with herself, she intra-acts with other individuals, some of whom have had worse, more debilitating experiences of CFS.

Acknowledging the agency of the Lightening Program, as well as reading Kristeva and colleagues’ radical approach of humanities through Barad, enables us to see the intra-action of human and nonhuman actors reinforcing the “becoming” nature of Nina’s recovery process. The program itself intra-acts in this process. A central idea of LP is the importance of fresh thinking – changing the mindset – as a means of providing positive material/bodily responses geared to reducing stress and promoting participants’ recovery. In Nina’s case, her sense of progress at having stopped her fear of negative bodily responses and having a much increased capacity in turn intra-acts with the objectives of the program. The program emphasizes both behavioral change (cutting off thought processes established when ill) and a focus on the idea that “you can do it”. Nina’s success in completing the program can be said to show how she and the objectives of the program have intra-acted.

Concluding remarks

The continuing debate over the causes and treatment of CFS remains polarized between those presenting CFS as a biomedical condition and those who perceive it as a psychological illness. On the basis of Nina’s recovery story, we have demonstrated how the radical approach to humanities provided by Kristeva and colleagues enables a fresh understanding of CFS: one rooted in the idea of the human body as a biocultural fact. By drawing on Barad’s ideas of agential realism, Nina’s recovery from CFS can also be understood as an entangled process where the material and cognitive (the biomedical and psychological aspects of the body) intra-act in a recovery process of “becoming.” This reconceptualization entails an intra-active analysis of the recovery process. During this process of “becoming,” there will be individual differences regarding the prominence of biological (material) components and of psychological (cognitive) ones. However, this should not be seen as a linear continuum in which individuals move forth and back between the extreme points. Rather, recovery should be seen as an entangled process where biological, cognitive and psychological aspects intra-act. From this it is evident that what counts as meaningful in the recovery process will be unique to each individual.

These findings have wide-ranging clinical implications. There is a need for a radical rethinking of psyche and soma, a move away from ingrained dualistic understandings of the recovery process towards a holistic approach in which the entanglement of both human and nonhuman aspects is recognized and valued.

Notes

1 http://www.me-foreningen.info/ressurser/me-foreningens-rapporter/me-foreningens-brukerundersokelse-2012/