By Ruth Falkenberg
I have been lying in bed with Long Covid for nearly three months now. Even small tasks are incredibly exhausting for me. I have constant pains, and I am basically unable to continue my PhD, which I would so much like to move forward. This is not what this short piece is about, but I want to disclose from the beginning from what position I am writing these reflections.
In the past weeks, I’ve been thinking a lot about Long Covid research as it is currently unfolding, about papers that have been brought to my attention (‘did you see this new article yet?’ ‘oh, my colleague is also doing research on this, take a look!’), as well as about discussions and activism happening on social media platforms. I want to share some of these bedside reflections here.
On the one hand, it is certainly most welcome that research on Long Covid is accelerating now, after the condition itself, people’s suffering, and the lack of adequate treatment options have been ignored in so many spaces for far too long. More research on the condition is most welcome, not only by people suffering from Long Covid, but also by those who are dealing with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – a condition that has existed as a medical diagnosis for decades (Rogers 2022). Nevertheless, patients and their suffering have remained mostly unacknowledged, uncared for, and even gaslit by large parts of the medical system.
On the other hand, I all too often find myself stumbling across papers – from a broad spectrum of sciences, including social sciences and humanities – that tend to present as new findings what people suffering from ME/CFS and Long Covid have known and tried to bring to attention for years. For example, yes, both patients and those few doctors that are experienced with seeing and taking seriously patients with ME/CFS and Long Covid have soon recognized the often greatly overlapping symptom constellations of the two conditions. Yet, it sometimes seems that such insights that have been gained and gathered by patients and practitioners – personally but also in Facebook groups, internet fora, or different kinds of associations – are now being heralded as ‘breakthrough findings’ in academia. Of course, it makes sense to further strengthen and substantiate existing insights of patients and practitioners with clinical data and to develop biomarkers for diagnosing ME/CFS and Long Covid, etc. Nevertheless, from reading respective articles, my impression is that such research is mostly done without much contact with the knowledge cultures and existing insights of those most affected.
Research in Science and Technology Studies (STS) has pointed to problems of lacking exchange and mutual learning between different knowledge cultures – but also the potential latent in such exchanges – for decades (see, e.g., Wynne, 1989). Yet, being deeply affected by this current case myself, I find it hard to witness how academia oftentimes seems to present as cutting-edge findings that seem crystal clear to patients and experienced practitioners. I am thus increasingly asking myself what would need to happen in order to bring about more mutual learning between biomedical and other kinds of research and the experience-based knowledge that patients and practitioners have accumulated, cultivated, and shared over the past years and decades. Effectively building on these existing experiences would be particularly important for moving on much quicker to conducting pharmacological and other kinds of treatment studies that are so urgently needed. At the moment, ‘pacing’ – the extremely strict management of one’s anyways severely limited energy resources – is the best strategy there is to offer to patients with both (or the same?) conditions.
In my view, more mutual learning and contact between medical and patient- and practitioner-based knowledge cultures could also do a lot for such treatment studies themselves. Often, I hear utterances such as ‘there is no proper evidence’, ‘we need (larger) randomized controlled trials’, etc… and, sure, it would be great to create this kind of evidence. But patients with Long Covid and ME/CFS are taking tons of off-label drugs, prescribed by a handful of caring practitioners, while alternatives with a better evidence base lag behind demand. They are thus effectively creating their own evidence bases, derived from what helps and what does not. Instead of ignoring these evidence bases and sticking to dominant medical evidence hierarchies (on the latter see, e.g., Timmermanns and Berg, 2003; Trnka & Stöckelová, 2019; or Falkenberg 2019), researchers could at least try to gather them in retrospective cohort studies, or even case study series.
Sometimes, these days, I have been reminded of Steven Epstein (1996) and others’ writing on the AIDS uprisings, with people desperately calling for studies to be done differently, faster, with drugs being approved earlier, etc. I by no means want to compare the suffering of people back then with that of people today, as these are simply completely different conditions and contexts we find ourselves in. However, I feel that some re-thinking of medical evidence regimes and better communication between patient-based and academic knowledge cultures might also in the present case not be a bad idea – given the immense suffering going on, the fact that people are already taking experimental drugs, and that doctors are trying out every option that seems remotely useful to alleviate, if not causes, then at least symptoms. Once again, there are evidence bases that are built up in these experience-based knowledge cultures that should be more closely integrated with those of biomedical and other research.
STS research could play an important role here, in analysing and advocating for these issues with an active voice present in public discourse. Certainly, ME/CFS and Long Covid are also simply fascinating case studies from an STS perspective. Yet, I feel there is a danger also for STS to fall back into the all-too-comfortable mode of just writing another paper, packaging existing wisdom from other knowledge cultures in fancy analytic terms and publishing it in a disciplinary journal. While such publications might turn out to be an interesting read for other STSers and a valuable asset in the CV, it might not be of much help to affected people. I have, already at the beginning of the Covid pandemic, written about how important it is, especially in situations where there is so much suffering going on, to truly reflect on what kinds of research are actually needed and will help affected people. While jumping onto the next trendy topic may be tempting, already existing wisdom and embodied knowledge should not be ignored.
Overall, in my opinion, much more coordination work in research on Long Covid and ME/CFS is needed in the (social) sciences, but also in STS – and potentially facilitated by STS. STS researchers could actively take up an important role in bringing together the different implicated knowledge cultures and even call for a re-thinking of medical evidence hierarchies in this particular case. Such an active engagement from actors other than those affected would be particularly important since patients with Long Covid and ME/CFS hardly have the energy and capacity to engage in any kind of activism themselves. As Rogers (2022, p. 413) simply but appositely put it, “activism involves action, and people with ME/CFS can’t really do that”. It thus needs other actors to take up this task. And while this blogpost surely cannot draw a comprehensive picture of what would be needed to better bring together those different knowledge cultures, and in the end to better orient research in a way that it can truly support affected people, STS research and engagement could take important steps in such a direction. Coordination work from the field of STS may, amongst others, entail extensively exploring, with eyes wide open to things beyond usual academic horizons, how to build on existing knowledges and how to better coordinate the knowledge cultures of patients and practitioners with those of biomedical and other research. This might provide one step in bringing about research that truly helps affected people and integrates their embodied experience and long-standing engagement, rather than bluntly ignoring it.
Epstein, Steven. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.
Falkenberg, R.I. (2019). Downward-facing dog meets randomised controlled trial. Investigating valuations in medical yoga research. Master Thesis: University of Vienna
Rogers, E.L. (2022), Recursive Debility: Symptoms, Patient Activism, and the Incomplete Medicalization of ME/CFS. Medical Anthropology Quarterly, 36: 412-428. https://doi.org/10.1111/maq.12701
Timmermans, S., & Berg, M. (2003). The gold standard: the challenge of evidence-based medicine and standardization in health care. Philadelphia: Temple University Press.
Trnka, S. and Stöckelová, T. (2019), Equality, efficiency and effectiveness: going beyond RCTs in A. L. Cochrane’s vision of health care. Sociol Health Illn, 41: 234-248. https://doi.org/10.1111/1467-9566.1281
Wynne, B, (1989) Sheepfarming after Chernobyl: A Case Study in Communicating Scientific Information, Environment: Science and Policy for Sustainable Development, 31:2, 10-39, https://doi.org/10.1080/00139157.1989.9928930
Ruth Falkenberg is a doctoral candidate at the Research Platform for Responsible Research and Innovation in Academic Practice. In her work she is concerned with the intertwinements between (e)valuation of research and epistemic developments, focusing specifically on innovativeness and relevance as increasingly important evaluative registers. In doing so, she pursues a broader interest in neoliberal governance in academia, cultures of knowledge production, and research for social-ecological transformation.