The contested meaning of “long COVID” – Patients, doctors, and the politics of subjective evidence, 2021, Roth et al

Highlights
Experiential knowledge can fill crucial gaps in the pandemic discourse.

Long COVID online self-advocacy provides a rich source of subjective evidence.

Patient subjective evidence is challenging the normative role of clinical evidence.

Activism made long COVID diagnosis as a requirement for recognition obsolete.

Abstract
In our article, we reconstruct how the patient-made term “long COVID” was able to become a widely accepted concept in public discourses. While the condition was initially invisible to the public eye, we show how the mobilization of subjective evidence online, i.e., the dissemination of reports on the different experiences of lasting symptoms, was able to transform the condition into a crucial feature of the coronavirus pandemic. We explore how stakeholders used the term “long COVID” in online media and in other channels to create their illness and group identity, but also to demarcate the personal experience and experiential knowledge of long COVID from that of other sources. Our exploratory study addresses two questions. Firstly, how the mobilization of subjective evidence leads to the recognition of long COVID and the development of treatment interventions in medicine; and secondly, what distinguishes these developments from other examples of subjective evidence mobilization. We argue that the long COVID movement was able to fill crucial knowledge gaps in the pandemic discourses, making long COVID a legitimate concern of official measures to counter the pandemic. By first showing how illness experiences were gathered that defied official classifications of COVID-19, we show how patients made the “long COVID” term. Then we compare the clinical and social identity of long COVID to that of chronic fatigue syndrome (ME/CFS), before we examine the social and epistemic processes at work in the digital and medial discourses that have transformed how the pandemic is perceived through the lens of long COVID. Building on this, we finally demonstrate how the alignment of medical professionals as patients with the movement has challenged the normative role of clinical evidence, leading to new forms of medical action to tackle the pandemic.

Keywords
COVID-19, Subjective evidence, Illness experience, Patient knowledge, Chronic fatigue syndrome, Social movements, Social media, Co-production

Open access full text
https://www.sciencedirect.com/science/article/pii/S0277953621009515

 

I find this tedious. It isn't. Clinical evidence comes primarily from the subjective evidence from the patient - the history - and always has.

Using that evidence to build understanding of disease is then something that requires scientific rigour rather than social memes.

I am not sure Long Covid has been a good meme. It has obscured the fact that ME-type illness seems to be common following Covid-19 and that any attempt at 'rehab' after Covid should take that into account.

 

Which can be heavily biased due to the preconceptions of practitioners and researchers - case in point "CFS" research.