Postviral Ethics - RCPS & PCNN

Conference report and recordings

0. What is Long Covid? 

Medically, Long Covid (also often referred to as Post Covid) entails a range of often severely disabling symptoms that persist for more than 3 months after a SARS-COV-2 infection. Long Covid is a biomedical disease caused by a SARS-Cov-2 viral infection, that often includes immune dysregulation, cardiovascular problems, haematological issues, viral persistence and organ damage amongst others. Long Covid is a severe multisystemic disorder that affects the entire body, and often leaves patients house- and bedbound for months and years on end. Reinfections are dangerous as they both worsen the state of existing patients, and increase the risk of developing Long Covid for everyone. The number of Long Covid patients are currently estimated to exceed 400 million people worldwide, and it continues to grow. 

What are the ethical challenges of Long Covid?

Long Covid and PAIS not only constitute a medical challenge but also raise many extremely important ethical questions. 

1. The Psychologization of Post Viral Illness

The first ethical dilemma of post viral illness is its psychologization: its depiction and perception as a psychological rather than a physical illness, with stigmatising and other harmful effects.

Dr Paula Muhr (University of Zurich) explained that psychologization has its historical roots in Freudian analysis, and particularly the idea of hysteria. The label “hysteria” is often still applied to those suffering from medically unexplained illnesses, including post viral illnesses such as Long Covid and MECFS. This directly contributes to patients’ stigmatisation and misrecognition. 

Ms Ronja Büchner (University of Leipzig) showed, through her extensive survey analysis in Germany, that stigmatisation and psychologization occurs very frequently. It both hinders biomedical research and constitutes a significant emotional burden for post viral patients.

Prof. dr. Georg Schomerus (University of Leipzig) explained that psychologization entails a social power relation, wherein patients are kept down (by portraying them as hysterical women), the problem is kept away (by not talking about it) and others are kept in (by demonising patients who demand resources). 

Prof. dr. Vivienne Matthies-Boon (Radboud University) argued that psychologization is the flipside of the critique of medicalisation. The critique of medicalisation sought to liberate patients from a reductionistic medical view of disease. Yet the holistic BioPsychoSocial (BPS) model that then emerged not only regarded patients with suspicion (as faking their illness), it also often led to a severe deterioration of patients’ physical state (even up to the point of death). Matthies-Boon thus explained that we urgently need to rethink this holistic model and particularly the values of individual responsibility and individual autonomy within healthcare. 

Prof. dr. Naomi Head (University of Glasgow) explained how social relations are structured by emotions, and that in the case of Long Covid, vulnerability is often met with fear, stigmatisation, and denial, which in addition to their physical illness impose a further existential burden on patients. 

2. The invisibility of patients

The second ethical challenge of post viral illness is the invisibility of patients. 

Prof. dr. Tamar Sharon (Radboud University) argued that there was a relatively high amount of spontaneous collective pandemic solidarity in the early years of the pandemic. Yet, when this started to wane, the Dutch government failed to institutionalised social solidarity and resorted to a policy of individual responsibility instead. This meant that in addition to the physical invisibility of the illness itself, and the social invisibility of patients (due to their house/bed boundedness), patients also suffered from political invisibility. Politically ignored, Long Covid patients continue to fall through the cracks of clinical care, employment protection, and welfare systems.

Prof. dr. Vivienne Matthies-Boon (Radboud University) complemented Prof. dr. Sharon’s talk with a selection of patient narratives of invisibility. These include narratives of both adults and children from the Netherlands and Germany. 

3. Epistemic injustice and the denial of patient expertise

The third ethical challenge of post viral illness is epistemic injustice and the denial of patient expertise.

Dr Charlotte Blease narrated how Long Covid patients face epistemic injustice: they are not believed, their testimony is discredited, and their lived expertise is dismissed. This affects how research is conducted, how services are designed, and who is seen as a credible source of knowledge. She insisted that an ethical model of knowledge production is needed wherein patient involvement in research is valued, and wherein adjustments are made so as to avoid doing medical harm through participation. 

Guus Liebrand and Hermien Lankhorst from the patient activist group Niet Hersteld reflected on the difficulties they experienced as a patient group of making patient voices heard, and also of the struggle of diversity representation within patient activism. 

4. Children and post viral illness

The fourth ethical challenge of post viral illness is that the worst affected group, children and young people, often suffer the most misrecognition and are the last to receive care.

Dr Vivek Bhatt (NYU – Liberal Arts) explained that Long Covid has implications for children’s rights to education, health, and a private and family life, among others. Children also have a right to have their best interests taken into consideration in policy-making processes relating to long COVID. Dr Bhatt thus urged us to take these human rights implications seriously.

Ms Sandra Bleyenberg from the patient group Children with Long Covid (Kinderen met Long Covid) then spoke about the challenges she faced as a mother of two children with Long Covid, both in terms of medical care, education and the social security system. She also spoke about the kinds of activism Children with Long Covid are engaged in to make the plight of children with Long Covid more visible. 

5. Post viral illnesses in the broader context of climate change and planetary health

The fifth ethical dilemma is the failure to regard post viral illnesses in a broader context of climate change and planetary health

Dr Ernst Jürgens, MD, explained how Long Covid and postinfectious illness are part of the issue of planetary health, and how we need an systemic alteration in thinking about these illnesses in this context. For not only will there be an increase of postinfectious chronicity in light of climate change, the distinction between communicable and non-communicable illnesses will also disappear.

Acknowledgements

Making this workshop a success was of course also due to the moderators, and in that context we would also like to thank: Prof. dr. Anske van der Bom, Tom Molmans (MD), Dr Guilel Treiber, Dr Tamar Sharon and Dr Marcel Becker.