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

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

 

The closest they get to referencing ME.

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

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

 

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.

 

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.

 

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.

 

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).

 

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.

 

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

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.

"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.

 

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.

 

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.

 

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.

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.

 

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.