Long Covid – The illness narratives, 2021, Rushforth, Greenhalgh et al

[Andy]

Highlights

• Long Covid is a patient-defined illness which gained legitimacy in online communities.
• We analysed long Covid narratives using socio-narratology.
• Narrators used literary devices to make sense of illness and persuade their audiences.
• A unique feature of many narratives was absence of a professional therapeutic witness.
• Storytelling may be a key means by which online communities achieve collective action.

Abstract

Callard and Perego depict long Covid as the first illness to be defined by patients who came together on social media. Responding to their call to address why patients were so effective in making long Covid visible and igniting action to improve its care, we use narrative inquiry – a field of research that investigates the place and power of stories and storytelling. We analyse a large dataset of narrative interviews and focus groups with 114 people with long Covid (45 of whom were healthcare professionals) from the United Kingdom, drawing on socio-narratology (Frank), therapeutic emplotment (Mattingly) and polyphonia (Bakhtin).

We describe how storytelling devices including chronology, metaphor, characterisation, suspense and imagination were used to create persuasive accounts of a strange and frightening new condition that was beset with setbacks and overlooked or dismissed by health professionals. The most unique feature of long Covid narratives (in most but not all cases) was the absence, for various pandemic-related reasons, of a professional witness to them. Instead of sharing their narratives in therapeutic dialogue with their own clinician, people struggled with a fragmented inner monologue before finding an empathetic audience and other resonant narratives in the online community. Individually, the stories seemed to make little sense. Collectively, they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story. Evolving from individual narrative postings to collective narrative drama, long Covid communities challenged the prevailing model of Covid-19 as a short-lived respiratory illness which invariably delivers a classic triad of symptoms; undertook and published peer-reviewed research to substantiate its diverse and protracted manifestations; and gained positions as experts by experience on guideline development groups and policy taskforces.

Open access, https://www.sciencedirect.com/science/article/pii/S0277953621006584

 

[Andy]

The closest they get to referencing ME.

The absent clinical witness in early long Covid narratives also contrasts with the many examples in the literature of illness narratives—including HIV, chronic fatigue and related syndromes, and some mental health conditions—in which the clinical witness has been depicted negatively as unsympathetic, disbelieving and wedded to a different model

and here they convert CFS/ME into "chronic fatigue".

Sociological research on illness narratives can be divided broadly into three types. First, the autobiographical monologue as exemplified by Frank's (1995) classic story of testicular cancer and heart disease as a young man. Second, research undertaken by clinicians or social scientists who interview a purposive sample of patients about their illness, with or without an ethnographic component – for example, chronic pain (Werner et al., 2004) or chronic fatigue (Whitehead, 2006).

And we could offer insight here but Greenhalgh et al seem to want to steer clear of us as much as possible.

6. Conclusion

This study has affirmed long Covid as a patient-defined illness which gained legitimacy largely through the stories and actions of online communities. Using a socio-narratology lens, we surfaced how these groups achieved therapeutic emplotment and a strong collective identity by the telling, re-telling and affirmation of stories.

Since we completed our data collection (October 2020), long Covid patient communities in the UK have earned a place at the policy table, with their members invited to join national guideline groups and task forces as ‘experts by experience’. While some people with long Covid remain unwell with no clear path to recovery, accounts of full and partial recovery are beginning to appear. It will be interesting to revisit the long Covid narratives in the future to see what new dialogues are occurring between those who have recovered and those who have not.

 

[Trish]

'we surfaced how these groups achieved therapeutic emplotment'

Alphabet soup at its finest.

 

[Peter T]

Is this methodology inherently liable to imposing its own ‘narrative’ on what is being studied, especially given Long Covid describes a group of related phenomena making up what is likely to turn out to be a fuzzy set.

Though vague about how all the patients were selected, we do know a proportion were entirely self selected, and surprisingly we are not told about their ongoing symptoms, what proportion have identified organic damage and what proportion had ME type symptoms, leaving us very unclear how the authors themselves ‘narrated’ Long Covid and how that may have impacted the study.

 

[NelliePledge]

Socio-narratology

- mmm well all I take from it is a classic example of specialised academic language and terminology seriously hampering communication.

 

[rvallee]

Pointless word salad. Basically academic parody. Stop getting high off your own farts, dammit.

It seems custom-built to be cited as part of a biopsychosocial narratives model. Which I assume is the only reason to write this meandering navel-gazing nonsense.

 

[chrisb]

You can see where this is going. Perhaps Greenhalgh will soon be chairing a symposium on long-covid. After all, someone thought that Kleinman would be a good choice for the one on CFS.

 

[Snow Leopard]

Individually, the stories seemed to make little sense.

That seems like a rather nasty and condescending thing to say...

 

[SNT Gatchaman]

Individually, the stories seemed to make little sense.

That seems like a rather nasty and condescending thing to say...

Agree, might have been worded better. In context, I think the authors are saying that any one patient's story was not explainable (with "our" current knowledge), but in aggregate demonstrated that this was a real "new" disease. (Obviously not a new disease/symptom complex).

Individually, the stories seemed to make little sense, but collectively they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story.

 

[Sean]

...and a powerful call for action to fix the broken story.

Not fix the broken medical system?

 

[Joan Crawford]

I can almost hear the build up to a 'new' CBT (or similar) 'understanding' of the 'broken story'. And claims if rewriting scripts to regain health

I thought the piece was pretty patronising. If I had long Covid and has used precious energy and time to take part in the project I suspect that I would be pretty pissed off. And what of subgroups and those with objective pulmonary issues post hospitalisation!

It does somewhat read as though the academics have foisted their own biases and beliefs on the situation. Circumstances are what they are in a pandemic and if patients cannot be seen by their doctors to witness what has happened to them, it kind reads they are suggesting that the symptoms / phenomenon is therefore less legitimate. Do others read it that way? That's kinda just nasty and misrepresentates the difficulties, losses and horribleness of the predicament patients find themselves in. Is it just me, but it is starting a narrative that it is OK to be skeptical and disbelieving about patients and their suffering. Aka it's OK to gaslight. Ugly.

 

[SNT Gatchaman]

...and a powerful call for action to fix the broken story.

Not fix the broken medical system?

I interpret the "broken story" here to actually be the deficient medical system.

I can almost hear the build up to a 'new' CBT (or similar) 'understanding' of the 'broken story'.
[...]
Do others read it that way?

In all honesty, I'm reading it quite differently. I think the authors are recognising and highlighting these very unusual circumstances where a new (not really) disease develops and is identified by patients in the absence of the normal medical reviews. That these patients then connected remotely, validating their experiences and defining the symptom commonalities. This grass-roots patient group then went on to name the new condition: "Long Covid", a name that in all likelihood will dominate the officially sanctioned "PASC".

I think the purpose of the paper is to try and understand how the patients have been so effective at overcoming the limitations of medical knowledge at that point in time.

Maybe the paper, which is so focused on the power of language and social narratives, suffers a little with some word choices: e.g.

Responding to their call to address why patients were so effective in making long Covid visible and igniting action to improve its care

"Address" here might have been better as "understand" or "learn" and lose the implication that something needs to be done to stop this happening again.

 

[NelliePledge]

It suffers a lot with word choices but I’m repeating myself.

 

[Trish]

I can almost hear the build up to a 'new' CBT (or similar) 'understanding' of the 'broken story'. And claims if rewriting scripts to regain health

It does somewhat read as though the academics have foisted their own biases and beliefs on the situation. Circumstances are what they are in a pandemic and if patients cannot be seen by their doctors to witness what has happened to them, it kind reads they are suggesting that the symptoms / phenomenon is therefore less legitimate. Do others read it that way? That's kinda just nasty and misrepresentates the difficulties, losses and horribleness of the predicament patients find themselves in. Is it just me, but it is starting a narrative that it is OK to be skeptical and disbelieving about patients and their suffering. Aka it's OK to gaslight. Ugly.

In all honesty, I'm reading it quite differently. I think the authors are recognising and highlighting these very unusual circumstances where a new (not really) disease develops and is identified by patients in the absence of the normal medical reviews.

It is fascinating reading the article through the lens of having ME for over 30 years with almost no clinical engagement from anyone, and the little I've had superficial, useless or actively harmful. So much of this long covid story applies equally to ME, but for different reasons. I wonder whether Greenhalgh et al. are prepared to acknowledge that parallel. They tell this as if it were an entirely new phenomenon.

As Charon has commented, the traditional therapeutic dialogue embraces both trust (the patient makes themself vulnerable through telling their story) and obligation (the clinician incurs ethical duties through hearing it) (2008). Long Covid calls for socio-narratological examination as a novel illness where both trust (on the patients' part) and obligation (on their doctors') went awry.
...

The absent clinical witness in early long Covid narratives also contrasts with the many examples in the literature of illness narratives—including HIV, chronic fatigue and related syndromes, and some mental health conditions—in which the clinical witness has been depicted negatively as unsympathetic, disbelieving and wedded to a different model (Dumit, 2006; Foster, 2016; Schermuly et al., 2021; Woods et al., 2019).

my bolding. I'm not sure whether an absent clinical narrative is worse or better than a negative and disbelieving one as we've had and still have.

Veracity – we were interested in why and by whom the long Covid narratives had been believed and disbelieved. We studied stories about the narratives – in particular, narrators’ accounts of thwarted attempts to tell their stories and recruit health professionals to engage with, and act on, them.

Same for ME/CFS.
Read all the following quotes with ME/CFS instead of long Covid, and it's the same story. The only difference is that a lot of Covid happened at once and online community was a possibility from the start.

As they shared their narratives and discovered the common experience of both shame and blame, a collective sense of anger developed towards unjust treatment from a society that had prematurely defined what was ‘normal’ for this illness.

Metaphors were telling: people talked of going ‘one step forward, one step back’, of ‘crashing’, and of being ‘stuck’. In all these storylines, the cruelty of hope axiom replays: there is desire, effort and anticipation towards a recovered future state, repeatedly dashed by lack of improvement, setbacks or the retrospective realisation that recovery has not even begun.

Schei (2006) has defined this combination of therapeutic continuity, empathy, and willingness to learn as the essence of clinical leadership. It was a recurring source of frustration and hurt in long Covid communities that many clinicians in the narratives were unable or unwilling to take on this role.

Gaslighting – deliberately psychologically tormenting and undermining the patient's account of their illness – was mentioned in several interview and focus group accounts. Clinically-trained participants in our sample tended to be more knowledgeable of the pressures within the system and keen to avoid accusations of mismanagement or ‘gaslighting’ of patients by their doctors. Rather, they were keen to use their combined clinical and experiential knowledge to help redesign services—a topic we have covered elsewhere (Ladds et al., 2020a)).

In contrast to widespread (though by no means universal) rejection of patients’ accounts by clinicians, the online community was considered a safe space in which stories could be shared and believed. More practically, it was also a forum for exchanging knowledge about recovery practices (especially self-help treatments such as diet and nutritional supplements, and approaches to exercise and pacing), as well as discussing research.
Many commented that joining online support groups had made them more knowledgeable than the healthcare professionals with whom they were interacting – a situation which is known to generate awkward interactional dynamics in clinical consultations.

A group of doctors with long Covid set up their own group as they found what they termed ‘doctor bashing’ on some of the other support sites tiresome.

Some online communities became a springboard for action to establish long Covid as a legitimate disease in medicine, healthcare, and wider society – thus enacting a collective version of Frank, 2010, Frank, 1998, Frank, 1995 quest narrative. Long Covid stories convey knowledge about a novel and complex condition – and impart moral lessons about what needs to be done to support people with it.

More generally, the groups sought to dispel myths, ensure that patients developing symptoms of long Covid would be forewarned with knowledge about the condition and the system, and use their lived experience to redesign services.

My bolding. Good luck with that.
And the final paragraph:

Since we completed our data collection (October 2020), long Covid patient communities in the UK have earned a place at the policy table, with their members invited to join national guideline groups and task forces as ‘experts by experience’. While some people with long Covid remain unwell with no clear path to recovery, accounts of full and partial recovery are beginning to appear. It will be interesting to revisit the long Covid narratives in the future to see what new dialogues are occurring between those who have recovered and those who have not.

My bolding. Wait until you want a guideline that rules against GET published and the Royal Colleges throw a hissy fit.

 

[Hutan]

Individually, the stories seemed to make little sense, but collectively they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story.

The most annoying thing about this article, beating even the language that is used, is this idea of Long Covid being a 'new illness'.

Putting the idea of Long Covid being an umbrella term for various sorts of post-infection issues aside for a moment, "post-infection syndromes that look like ME/CFS" have been happening for a long time, and after many illnesses. Surely these people (ed. the authors) are aware of that; of the people badly affected after other coronavirus infections even, like SARS1 and MERS.

That ignored real-world context rather blows a hole in the socio-narratology of the authors, resulting in their emplotment falling into a void where truth has no purchase.

 

[Trish]

That ignored real-world context rather blows a hole in the socio-narratology of the authors, resulting in their emplotment falling into a void where truth has no purchase.

Brilliant summing up.

 

[rvallee]

That seems like a rather nasty and condescending thing to say...

Also revealing about the authors. It's precisely by reading the stories that it became obvious to me. But that's because I don't interpret everything through ideological lenses and I have actual knowledge of the issue to compare to. As early as April 2020 the patterns were obvious to me. That they are not obvious to them with a full year of hindsight says it all about pervasive inability to learn from experience that is common in medicine.

In fact it's remarkably consistent when you consider the overall patterns. But it would never make sense to someone who rejects reality and substitutes their own. So as usual this is about them, their perspective, their misunderstanding and how it matters more than actual reality.

 

[rvallee]

I can almost hear the build up to a 'new' CBT (or similar) 'understanding' of the 'broken story'. And claims if rewriting scripts to regain health

I thought the piece was pretty patronising. If I had long Covid and has used precious energy and time to take part in the project I suspect that I would be pretty pissed off. And what of subgroups and those with objective pulmonary issues post hospitalisation!

It does somewhat read as though the academics have foisted their own biases and beliefs on the situation. Circumstances are what they are in a pandemic and if patients cannot be seen by their doctors to witness what has happened to them, it kind reads they are suggesting that the symptoms / phenomenon is therefore less legitimate. Do others read it that way? That's kinda just nasty and misrepresentates the difficulties, losses and horribleness of the predicament patients find themselves in. Is it just me, but it is starting a narrative that it is OK to be skeptical and disbelieving about patients and their suffering. Aka it's OK to gaslight. Ugly.

The writing on the wall suggests ACT will be the hill they die on, frankly.

So, literally the opposite of what they have been pushing for decades, and no one will skip a beat during their flip, not even observers who clearly know better and suspend disbelief.

 

[SNT Gatchaman]

Putting the idea of Long Covid being an umbrella term for various sorts of post-infection issues aside for a moment, "post-infection syndromes that look like ME/CFS" have been happening for a long time, and after many illnesses. Surely these people (ed. the authors) are aware of that; of the people badly affected after other coronavirus infections even, like SARS1 and MERS.

Two of the six authors have long Covid, by which I presume they have ME/CFS. The patient stories they describe in the paper are nearly all those of ME/CFS symptom development/recognition, with only a few references to, e.g. long term lung damage, post ICU type scenarios as a counterpoint.

The authors quite possibly did not (do not??) recognise the diagnosis of ME/CFS in themselves, which seems to reflect the state we find the world, with a disease so atrociously mismanaged and denied.

Gaslighting – deliberately psychologically tormenting and under- mining the patient’s account of their illness – was mentioned in several interview and focus group accounts.

participants recounted to one another their accounts of describing their symptoms but being disbelieved or dismissed.

Even where specialist services existed, not all clinicians seemed aware of them and referral pathways were exclusionary or non-existent.
[...]
The gambling metaphor depicted both the rare existence of fit-for-purpose assessment and rehabilitation services and the fact that actually receiving such a service was (at the time of the study) unlikely.

As I read this paper, I found myself thinking it could have been written by some of our own group members, but my take may be strongly biased by my medical background!

If this paper turns out to be useful, it is probably as a support to the concept of the "patient-expert" in policy making.

long Covid patient communities in the UK have earned a place at the policy table, with their members invited to join national guideline groups and task forces as ‘experts by experience’.

 

[Andy]

A UK-centric subtly that you might not be aware of @SNT Gatchaman , is that one of the authors, Trisha Greenhalgh, has a history of being dismissive towards ME. This thread, Trisha Greenhalgh on ME/CFS and Long Covid, will probably give you all the background information that you might want on her.