Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden, 2025, Bredström and Jämterud

[SNT Gatchaman]

Post Covid-19 Condition as a Diagnosis: A Qualitative Study on Epistemological Tensions Among Experts in Sweden
Anna Bredström; Sofia Morberg Jämterud

BACKGROUND
At the onset of the Covid-19 pandemic, it became clear that some individuals experienced lingering symptoms after the infection. This condition, known as post Covid-19 condition (or long Covid), is defined by WHO as persistent or new symptoms 3 months after the initial infection, lasting for at least 2 months, and not attributable to another diagnosis. Hence, the definition is very broad.

AIM
This study aims to examine how post Covid-19 condition as a diagnosis is viewed and interpreted by Swedish stakeholders, showing how these understandings carry a range of epistemological tensions. The study also seeks to understand the implications of these epistemological tensions for treatment and care organisation.

METHODS
Qualitative interviews with 36 experts and key individuals in Sweden have been conducted.

RESULT
Experts agree that post Covid-19 condition is a complex syndrome and that persons who suffer are in need of care. However, several tensions in post Covid-19 condition as a diagnosis can be discerned. Most experts agreed on the gender and racial disparity where white women with Swedish background were a majority of post Covid-19 sufferers, while migrant patients and the elderly are largely absent. In relation to social categories, the question if children can have post Covid-19 condition is here a highly contested question. There is also disagreement on the aetiology of post Covid-19 condition, with some experts viewing it as a new, unique condition requiring specialised treatment, while others see it as similar to other post-viral conditions, treatable in primary care.

CONCLUSION
The article concludes that experts are divided in their understanding and that this affects Swedish policy on post Covid-19 care and treatment, showing that post Covid-19 condition is not only a medical issue but also a political battleground where science, expert opinion and patient experience shape policy.

PATIENT AND PUBLIC CONTRIBUTION
The article focuses on studying stakeholders perspectives as these are key for informing public opinion and policy. In this article, all main organisations and authorities involved in post Covid-19 care are represented. We also see patients as crucial stakeholders and representatives of patient organisations, as well as representatives of some migrant communities, who have been interviewed. The latter were included to gain insights from groups that were largely absent in post Covid-19 care.

Web | PDF | Health Expectations | Open Access

 

[Utsikt]

Both adequate knowledge and the right attitude were seen as crucial to the ability of the post Covid patient to get the help they need to get well. Focusing only on treating the symptoms, without a deeper understanding of post Covid, could actually have undesirable effects. A recurring example was when exercise was suggested as part of the treatment for symptoms of fatigue and depressed mood, symptoms that overlap with other diagnoses such as burn-out and major depression. Not knowing the cause of the symptoms, or not having the correct diagnosis, could lead to a worsening of the symptoms rather than treatment:

This is actually a fairly reasonable take, ignoring the exercise fetish in general.

This discourse of separating post Covid from other complex illnesses with overlapping symptoms was also surrounded by theories of underlying biomedical causes. The idea that post Covid was a result of residual virus in the body was one such theory. While the common definition saw post Covid as something that happened after the initial infection had healed, both patient advocates and some prominent doctors challenged this narrative and saw post Covid as an ongoing disease process:

I don’t see how these two views contrast. PVF and ME/CFS are ongoing disease processes that persist after the acute infection. PVF and ME/CFS can still be active disease processes even though the infection has ended. It’s wild to me if someone thinks it’s impossible for an infection to have long lasting effects that go beyond what happened during the acute infection. Maybe I’m not understanding something here?

Similarly, these experts did not consider it as important as the experts above to distinguish between post Covid and diagnoses with similar symptoms. On the contrary, they saw similarities and overlaps as important information. For example, several felt that the over-representation of well-educated, middle-aged women among post Covid patients may well be related to the fact that there are many who have an underlying vulnerability due to previous experience of burn-out or depression, diagnoses where the same category of patient is also over-represented:

Their ignorance is showing. Both that they believe in the psychosomatic theories and that they are not aware of systemic biases against minorities, etc.

Finally, there is also less focus on cure in these interviews, instead emphasising adaptation and time, that is, that ‘most people get better eventually’. It was also felt to be ethically unacceptable to prioritise post Covid over other conditions, especially as the degree to which a post Covid patient is affected by their symptoms varies greatly. Therefore, in their view, and in contrast to the experts above, primary care would be the obvious place to treat post Covid, and it is also well placed to deal with comorbidities and complexity, they argued:

But somewhere in this we know very little about the disease and therefore it is also the case that the role of primary care is to hold the whole together somewhere. So it is clear that there are few people who do not have something else with them in this as well. And that's another reason why the entrance is still via primary care […] there is a general direction that the hub is still in primary care, but that some may need to be referred onwards.

It scares me that these views appears to be prevalent in healthcare. It’s blatantly obvious that they are completely unaware of how neglected this area of medicine is.

 

[rvallee]

After 5.5 years, this is pathetic, but definitely worth putting down in writing for how truly mediocre this is. Not nearly scathing enough, though. A kind of anatomy of a disaster where the disaster is simply not acknowledged and decades could pass with only those suffering the consequences ever caring about it directly.

For sure this does not describe experts doing a proper job, it describes a chaotic mess of ineptitude and systemic paralysis. Nothing's happening because nothing is being done about it. How some physicians are still in denial about children is definitely political, though, no question there.

Assuming this is a quote from a physician:

But for me it is not a new disease. This has existed … post-viral […] We see the same problems with MERS, SARS, influenza. This fatigue has also existed after other infectious diseases or other diseases. So I don't think it's particularly strange.

And you didn't do anything about it either, do not know how to treat it, in fact systematically discriminated against it, a known and well-documented fact, hence why things are stuck. Funny how that doesn't work.

There appears to be a significant split of expertise, leaning strongly on the patients remaining the real experts because medicine does not have a plan B, or even a plan A.

The other group of experts, by contrast, seek to avoid exactly that link; by referring to ME, burn-out and depression and anxiety, they seem to think, post Covid risk losing its status and become one of those female-dominated non-specific disorders that have struggled to gain legitimacy and resources within health policy and care.

How about fixing both? No? Neither it is, then? Let's keep doing nothing, that's sure to not work, but who cares, uh? Why have they struggled to gain legitimacy and resources? How is that even a thing?!

So, as a study, this is fairly good, but it, again and again, evokes a disaster that is completely mishandled.

 

[Sean]

and that they are not aware of systemic biases against minorities, etc.

Agree, though worth adding that not all bias is against minorities. Women are not the minority of the population.