[...] Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre, 2025, Sarma et al

[forestglip]

‘We Don't Have to Prove to People How We're Feeling’: Understanding the Role of Peer Support Groups in Countering Epistemic Injustices in Long COVID at a US Centre

Nandini Sarma, Sam Gage, Catherine L. Hough, Aluko A. Hope

Background
Long COVID, an infection-associated chronic condition characterised by new or worsening signs or symptoms for more than 3 months after a SARS-CoV-2 infection, is a chronic debilitating illness which remains poorly understood. Epistemic injustice in healthcare describes the unique harms or wrongs done to a person in their capacity to share and acquire knowledge about their illness. Although the concept of epistemic injustice has been described in other chronic conditions, few studies have explored these concepts in Long COVID.

Objectives
(1) To understand the lived experience of epistemic injustice in adults with Long COVID who were participating in a peer support group intervention and (2) to describe the potential impact of the support group on these experiences in participants.

Methods
Qualitative analysis utilising inductive analysis of semi-structured individual interviews of patients with Long COVID who participated in a peer support group intervention at an academic medical centre in Oregon, USA.

Results
We identified three themes that captured the lived experiences of epistemic injustice in Long COVID support group participants: (1) dismissal and disregard; (2) episodic and unpredictable symptoms and impairment, and (3) knowledge and interpretation practices. We also found that the peer support potentially impacted these experiences of epistemic injustice through (1) recognition and validation; (2) solidarity and community, and (3) information exchange and expectation setting.

Conclusions
Long COVID patients are at risk of experiencing epistemic injustice in seeking healthcare for this complex condition. Peer support programmes may be one approach to help counter these experiences and should be further studied as a complex intervention for improving patient-centred care in Long COVID.

Link | PDF (Health Expectations) [Open Access]

 

[rvallee]

Peer support programmes may be one approach to help counter these experiences

I don't follow. What does that have to do with anything? The problem isn't with peers, it's with health care systems and the medical profession, who do explicitly require us to prove to them how we're feeling, even though they have no such tools, don't accept it, and don't even understand what we're telling them.

And the whole thing started explicitly through peer support communities. Literally. This is what the patient communities are and do: provide the only source of meaningful understanding and relevant information, however little of it there is. All this would do is formalize something that had to sprung up organically, but under the control of therapists, on a far smaller scale, since resources obviously don't exist to do this for most patients. Hell probably not even for 10% of patients.

There have already been dozens of papers and hundreds of news reports showing how bad things are. It's the medical profession that isn't listening or doing something about it, doing dozens more won't change anything. Especially if their solution is literally, as is tradition, to take what was already built, out of necessity, by the patient community, and claim it as their own.

Nope. This is not good enough. At this point they need to stop asking us, and start asking them why they aren't doing anything useful, have not managed to produce anything of value so far?

 

[Utsikt]

I don't follow. What does that have to do with anything? The problem isn't with peers, it's with health care systems and the medical profession, who do explicitly require us to prove to them how we're feeling, even though they have no such tools, don't accept it, and don't even understand what we're telling them.

And the whole thing started explicitly through peer support communities. Literally. This is what the patient communities are and do: provide the only source of meaningful understanding and relevant information, however little of it there is. All this would do is formalize something that had to sprung up organically, but under the control of therapists, on a far smaller scale, since resources obviously don't exist to do this for most patients. Hell probably not even for 10% of patients.

There have already been dozens of papers and hundreds of news reports showing how bad things are. It's the medical profession that isn't listening or doing something about it, doing dozens more won't change anything. Especially if their solution is literally, as is tradition, to take what was already built, out of necessity, by the patient community, and claim it as their own.

Nope. This is not good enough. At this point they need to stop asking us, and start asking them why they aren't doing anything useful, have not managed to produce anything of value so far?

Instead of making the abuser stop their abuse, we propose to rely on victims of ongoing abuse for helping themselves and other victims.

 

[Peter T]

Instead of making the abuser stop their abuse, we propose to rely on victims of ongoing abuse for helping themselves and other victims.

I suppose it is one step up from the abusers blaming support groups for the harm they themselves inflicted.

 

[Utsikt]

I suppose it is one step up from the abusers blaming support groups for the harm they themselves inflicted.

I think they still do. It’s just that the observers of the abuse don’t think it’s pertinent to make the abusers stop.

 

[jnmaciuch]

While I'm genuinely sympathetic to discussions of epistemic injustice in ME/CFS, I think this paper should have clarified the difference between testimonial and hermeneutical injustice, since there's going to be substantially different effect of something like a peer support group depending on which one you're talking about.

Testimonial injustice involves systemic lack of credibility afforded to a speaker based on elements of their identity. Hermeneutical injustice involves a lack of conceptual framework for understanding and talking about one's experience.

I think peer support groups are massively useful for the latter, since they provide the environment for information sharing, discussion, and collective theorization. They might even provide a small bubble where one can experience freedom from testimonial injustice among their peers.

But without that clarification, I think it can come across like they're saying peer support groups can fix testimonial injustice. Which is sort of definitionally impossible.

A missed opportunity, since I think a paper exploring the hermeneutical injustice angle [edit: more explicitly] would have been wonderful and probably would have avoided the wrong implications.

 

[rvallee]

I suppose it is one step up from the abusers blaming support groups for the harm they themselves inflicted.

It is! Seriously, the state of things is so bad, that this tiniest of giving in to reality is actually a significant step forward for the industry. It's really notable that it really marks a positive change. It's so tiny that it can only be measured using an electron microscope, but it's still a step some of them have managed to achieve. After several decades of what can probably be described as the medical equivalent of "Rock and or Roll will turn our children into savages" and "Dungeons and Dragons will lead the youth to commit human sacrifices".

Small steps. Steps for ants, but steps anyway.

 

[rvallee]

since there's going to be substantially different effect of something like a peer support group depending on which one you're talking about

One of the most significant differences I can see in who is struggling, and who is doing disastrously, is life partners. Spouses, especially. The value of support is invaluable here. But peers cannot provide this support. It's not realistic to help someone who is drowning while we are drowning ourselves. And of course there is within this a huge difference between supporting partners, and those who aren't, or the sometimes inevitable shift from supporting partners to them giving up.

It makes such a huge difference. But this isn't. This is so far from being it.

 

[jnmaciuch]

One of the most significant differences I can see in who is struggling, and who is doing disastrously, is life partners. Spouses, especially. The value of support is invaluable here. But peers cannot provide this support. It's not realistic to help someone who is drowning while we are drowning ourselves. And of course there is within this a huge difference between supporting partners, and those who aren't, or the sometimes inevitable shift from supporting partners to them giving up.

It makes such a huge difference. But this isn't. This is so far from being it.

I think that the term “epistemic injustice” can be misleading for anyone who isn’t familiar with it from philosophy—it has a specific definition relating to injustices of knowledge building and sharing.

I totally agree with you that support groups won’t help injustices against pwME in general.

However, the paper isn't trying to say that—they're specifically talking about epistemic injustice. They should have clarified that they're talking about hermeneutical epistemic injustice in particular, but they aren’t claiming that support groups would help anything beyond this communal knowledge-building dimension.

 

[Trish]

I wish there were simpler words for these concepts. I'm grateful for the explanation, it helps the abstract make sense, but as soon as I see words like epistemic and hermeneutic my brain freezes, and you might as well be talking Martian.

I must have looked them up dozens of times over the years but I can't retain their meaning for more than a few seconds, and I normally enjoy learning new words.

 

[Utsikt]

Is it epistemic injustice to use language that is difficult to understand when studying and describing the consequences of not being understood?

 

[jnmaciuch]

Is it epistemic injustice to use language that is difficult to understand when studying and describing the consequences of not being understood?

I’m aware this is a joke but in a way, yes actually. Hermeneutical injustice—lack of appropriate (and accessible, it should be added) schema to understand and talk about one’s experience. Ironic!!

 

[Utsikt]

I’m aware this is a joke but in a way, yes actually. Hermeneutical injustice—lack of appropriate (and accessible, it should be added) schema to understand and talk about one’s experience. Ironic!!

I found this via Wikipedia.

Epistemological violence refers to the interpretation of social-scientific data on the Other and is produced when empirical data are interpreted as showing the inferiority of or problematizes the Other, even when data allow for equally viable alternative interpretations.

https://compass.onlinelibrary.wiley.com/doi/10.1111/j.1751-9004.2010.00265.x

Made me think of this comment that was made by a nurse’s supervisor in the FINE trial:

There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better”...I think it’s a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.’ (Supervisor)

https://www.s4me.info/threads/brain...d-discussion-thread.40713/page-21#post-602016

 

[jnmaciuch]

I found this via Wikipedia.

https://compass.onlinelibrary.wiley.com/doi/10.1111/j.1751-9004.2010.00265.x

Made me think of this comment that was made by a nurse’s supervisor in the FINE trial:


https://www.s4me.info/threads/brain...d-discussion-thread.40713/page-21#post-602016

Yup I think that’s a great example. A closely related concept that I think is particularly relevant in ME/CFS is willful hermeneutical ignorance—basically the idea that if someone (in a position of epistemic authority) has a strong preformed notion, any information they receive to the contrary can be flipped and misinterpreted as supporting their notions instead.

Aka we yell and scream that our illness is not psychosomatic, and they say “the illness is characterized by denial of psychosomatic origins.”

 

[Sean]

Aka we yell and scream that our illness is not psychosomatic, and they say “the illness is characterized by denial of psychosomatic origins.”

Which is a nasty double-bind par excellence.

It is exactly the sort of fundamental methodological error that psychs in particular should understand and do everything they can to avoid placing the patient in it.

Yet they instead ruthlessly exploit it to cover up their ignorance, incompetence, and lack of ethics.

 

[jnmaciuch]

Which is a nasty double-bind par excellence.

It is exactly the sort of fundamental methodological error that psychs in particular should understand and do everything they can to avoid placing the patient in it.

Yet they instead ruthlessly exploit it to cover up their ignorance, incompetence, and lack of ethics.

You’ve perfectly outlined what the “willful” part of willful hermeneutical ignorance is about here. The contrary evidence is always accessible to the people making these judgements, they’re just not listening.

Similar concepts of confirmation bias are often viewed as a passive process in that you’re not aware of doing it. But I think this concept shows the ways in which it is also a really active choice to continually misinterpret, deflect, and manipulate.

They could stop at any time, the resources are all at their disposal. But the phenomenon explains why so few actually come around—their privileged epistemic position creates a frame of reference where their active choices never feel active to them.

The people challenging them aren’t credible anyways, so the person in authority [edit: doesn’t even blink when they hear it]. To them, they’re simply calling it like it is, because they’re the only ones who can see it clearly.

Of course they’re going to claim that anyone calling them out for ruthless manipulation is simply a misguided crusader. It’s the most logical explanation that fits with everything else they believe.

I bet if you could open up their minds and objectively evaluate their thoughts, you wouldn’t find an ounce of shame because so many don’t even register what they’re actually doing.

[Edit: some may have some level of awareness and are just trying to cover their behinds, I’m sure. But the beauty of this concept is that it shows how a very active dynamic is often perpetuated without any conscious intention or awareness of wrongdoing.]

 

[rvallee]

Which is a nasty double-bind par excellence.

It is exactly the sort of fundamental methodological error that psychs in particular should understand and do everything they can to avoid placing the patient in it.

Yet they instead ruthlessly exploit it to cover up their ignorance, incompetence, and lack of ethics.

Hey, everyone knows that only guilty people claim innocence, therefore it's a long-standing legal principle that declaring one's innocence is a de facto admission of guilt.

Oh, wait, no it's literally the other way around nevermind haha funny thing about that, imagine if people had already been sentenced in irreversible ways that would be sooo awkward and totally a sign of a healthy functioning system.

 

[Jonathan Edwards]

I wish there were simpler words for these concepts.

And there are.

I totally agree with your disconbobulance, even though I did an MA in philosophy.
Hermeneutic makes me think of some sort of Dyson vacuum cleaner. I managed epistemic on the metaphysics course and injustice on the ethics course but never got my head around the combination.

Leibniz is much easier.