Epistemic in/justice in patient participation. A discourse analysis of the Dutch ME/CFS Health Council advisory process, 2021, Marjolein Lotte de Boer

Abstract

In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non-psychogenic.

This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13301

 

This article misses the mark from adopting the biopsychosocial perspective of ME/CFS that reigns in the medical field.

From the discussion at the end (bolding mine):

Contrary to the assumptions in the literature on patient participation (Abma, 2005; Beresford, 2003), this paper reveals that people with ME/CFS and their representatives in the context of the Dutch ME/CFS Health Council advisory process do not explicitly tend to voice subjective illness experiences. Instead, they predominantly offer biomedically oriented knowledge.
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ME/CFS patients do voice their subjective illness experiences: PEM/crashes first and foremost, as well as other symptoms such as orthostatic intolerance, cognitive impairments and their impact on daily functioning.

In particular, ME/CFS patients have voiced that their physiological symptoms fail to be treated by psychological therapies that have been made the standard of care for ME/CFS. They have also voiced that they have been harmed from such therapies (e.g. patient association surveys on GET). However, their experiences have been, and continue to be, consistently dismissed by medical doctors and researchers who advocate for a biopsychosocial understanding of the condition and for behavioral interventions.

Patients also have no significant public outreach to voice their illness experiences, and the general public tends to follow the framing of ME/CFS by medical bodies as a psychosomatic condition.

All in all, is it that patients do not voice their experiences, or that they are not being heard? The latter explanation seems the most plausible. It should be noted that if one adheres to the viewpoint that ME/CFS patients are loud activists, it would not make sense for them not to voice subjective experiences, as these contribute to highlighting their disability.

Also, in discussions with a national health authority, patient representatives should be expected to present new findings on the disease. In recent years, novel findings on the pathophysiology of ME/CFS have emerged from biomedical research, while biopsychosocial research has continued to produce the same stale explanations. It would be illogical that patient representatives, as well as the Dutch Health Council, did not rely on this new research to move forward rather than staying stuck in a decades-long status quo.

This emphasis on somatic framings and biomedical approaches to ME/CFS often goes hand in hand with representatives' strongly rejecting psychogenic understandings and treatments of the illness, and with an absence of non-quantifiable evidence in their advices on suitable diagnostic strategies and research avenues.
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It is interesting that the author does not mention explicitly why representatives reject psychogenic understandings and treatments. It is not, as one would likely infer from reading the paper, that they do so on the grounds that such approaches stigmatize the illness. It is because psychogenic theories and treatments are not empirically supported by the evidence -- they are based on work of critically low methodological quality (especially intervention trials) that does not allow to draw the conclusion that ME/CFS is psychogenic. In fact, they show quite the opposite.

When they receive a diagnosis of ME/CFS, and likely before too (the process taking years on average, as the author notes), patients tend to be referred to psychologists or psychiatrists, at which point most do try psychotherapy (it being, again, the standard of care). Surely, if the disease responded well to such treatments, to the point of being curative as BPS proponents have been claimed them to be, ME/CFS patients would not complain with having what would be seen as a mental illness.

It is also incorrect to imply that a psychogenic approach should only account for "non-quantifiable evidence". First, the author confuses "quantifiable" and "objective": the reason why (subjective) symptom scales in psychology exist is to provide quantifiable evidence, and nearly all BPS studies on ME/CFS rely on them. Second, it is entirely possible to assess the efficacy of psychogenic treatments through objectively measured evidence (in trials), but BPS proponents have disregarded those as they contradicted their viewpoint. More generally, the absence of objectively measured evidence contributes to the failure to replicate findings in the field of psychology.

Meanwhile, although biomedical research on ME/CFS is still not sufficient as of now, it has offered more plausible evidence on and leads into the pathophysiology of the disease.

In any case, whether subjective, objective or both, the Dutch Health Council must base its recommendations on quantifiable evidence. No BPS proponent could argue against this, as the biopsychosocial model claims to be rooted in evidence-based medicine.

This paper, however, also demonstrates that such a biomedicalized practice of patient participation may instigate and maintain various instances of epistemic injustice. That is, it shows that in patient representatives’ promulgating biomedical knowledge, this knowledge of laypersons, especially in comparison to expert participators such as clinicians and researchers, may be deemed invalid and unreliable.

These patient representatives may then run the risk of being excluded from policy documents, whereby they arguably suffer from testimonial injustice. Moreover, even when these patient representatives’ biomedical knowledge is acknowledged and recognized in participatory practices, this paper reveals that such practices may still incorporate epistemically unjust aspects. That is, a strong focus on the importance of biomedical evidence in diagnosing, researching and treating ME/CFS may lead to (sustained) reductive, even discriminatory thinking about who ill people are and to biased ideas about what kind of relevant knowledge these people hold.

These prejudiced views, in turn, may lead to a (continual) dismissal of the validity these people's illness testimonies and to (maintaining) hermeneutic gaps that inhibit these people from making sense of their illness.
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This part claims that a biomedical focus is unjust towards patient representatives without a knowledge of the biomedical research on ME/CFS, in that their input could be dismissed as not being evidence-based.

Why that would be so is not detailed, and although not in the Netherlands, the current development process of the NICE guidelines goes to show the contrary -- patients can submit their own input on how they feel the disease is best managed, as long as they have registered as stakeholders. For instance, S4ME has sent comments on pacing and symptomatic management for severe ME/CFS that are not evidence-based (due to a lack of evidence). Outside the UK, any national health authority would presumably review and respond to stakeholders' comments, including the Dutch Health Council.

With this consideration, it seems that the author meant that patient representatives with a non-biomedical, psychosocial viewpoint would be dismissed. However, it is the reverse that has certainly been true for decades -- patient representatives with a biomedical viewpoint being attacked (including in media outlets) when they have criticized BPS research with valid scientific arguments. The controversy around the Lightning Process in Norway is an ongoing example.

Patient representatives with a BPS viewpoint are going along with the prevailing medical understanding of ME/CFS (i.e. their views are automatically going to be taken into account), which health authorities have long adopted in their clinical guidelines (e.g. in the Netherlands, Belgium, UK). It should not be forgotten either that some patient associations have helped recruit participants for trials of behavioral interventions on ME/CFS. It seems unlikely, then, that health authorities would discriminate against them, or at least not in the foreseeable future. But as has been done, they may claim to be so when they are instead facing scientific rebuttal against unsupported claims on a theoretical psychogenic basis to ME/CFS and on the efficacy of behavioral interventions.

An up-to-date counter-example to this theoretical discrimination is to be found in recent guidelines for "medically unexplained syndromes" in most countries, such as chronic primary pain (including fibromyalgia), IBS or FND. They are typically rooted in a strong biopsychosocial approach, and the representatives of the patient associations that adhere to this approach are listened to in the development of these guidelines. Some of them even get to be interviewed for articles in the press or in medical journals.

The author's perspective would have been more balanced had she gone over history to see that her worry is unfounded. Unfortunately, the persisting, unidirectional power play from medical BPS proponents against patients with a stigmatized illness is reflected in her article.

 

We get it. You don't like patients and think we're stupid. Not worth writing about, though.

 

Strange. The author seems concerned with 'epidemic injustice' but then starts misrepresenting the views of patient representatives, saying that they should not focus solely on a biomedical model (without explaining clearly why this would be problematic).

She seems to base her information on documents received from a freedom of information request, but I doubt that she interviewed and talked to the actual patient representatives who were part of the Health Council.

I would argue that her paper is a good example of epidemic injustice.