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The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19, 2023, Cheston et al.

Discussion in 'Long Covid research' started by SNT Gatchaman, Nov 14, 2023.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    The Long or the Post of It? Temporality, Suffering, and Uncertainty in Narratives Following COVID-19
    Cheston, Katharine; Cenedese, Marta-Laura; Woods, Angela

    Long COVID affects millions of individuals worldwide but remains poorly understood and contested. This article turns to accounts of patients’ experiences to ask: What might narrative be doing both to long COVID and for those who live with the condition? What particular narrative strategies were present in 2020, as millions of people became ill, en masse, with a novel virus, which have prevailed three years after the first lockdowns? And what can this tell us about illness and narrative and about the importance of literary critical approaches to the topic in a digital, post-pandemic age? Through a close reading of journalist Lucy Adams’s autobiographical accounts of long COVID, this article explores the interplay between individual illness narratives and the collective narrativizing (or making) of an illness. Our focus on temporality and suffering knits together the phenomenological and the social with the aim of opening up Adams’s narrative and ascertaining a deeper understanding of what it means to live with the condition. Finally, we look to the stories currently circulating around long COVID and consider how illness narratives—and open, curious, patient-centered approaches to them—might shape medicine, patient involvement, and critical medical humanities research.

    Link | PDF (Journal of Medical Humanities)
     
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  2. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  3. bobbler

    bobbler Senior Member (Voting Rights)

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    Is this Katharine CHeston who is/was on the IAG for the Cochrane review ('recovered person') ?
     
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  4. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  5. Trish

    Trish Moderator Staff Member

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    Hmm. I have just read the article. It is based around the first person stories of a journalist, Lucy Adams, who suffered from Long COVID in 2020 and Laura Hillenbrand's account of her early suffering with ME/CFS decades earlier. They draw parallels between them.

    The story of Lucy Adams is all based on a couple of articles and a TV program from early in the pandemic, and includes several references to Paul Garner's articles and that she and he were in touch and his articles helped her.
    Then it stops. There is no filling in of the situation for either Lucy or PG after those first few months. PG's articles are in the reference list, yet there is no comment on his last one where he goes full on psychobabble.

    The 'conclusion' attempts to bring things up to date by contrasting the Natalie Shure poison about it being a social media generated illness, and the only thing the authors can find to rebut this is the newly found evidence that GWI is 'real' and the socially derived illness narrative was wrong. They sort of imply this might be true for ME/CFS and LC too, without expanding on the problem.

    I am left thinking this is not a satisfactory article because it leaves it open for PG and Shure's conclusions to be considered valid. By giving them both quite a prominent place as 'what happened next', while only telling a couple of stories of early 'long' disease, leaves it open for people to conclude that people are sick for a few months, then gradually recover, and maybe Shure and Garner are right.
     
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  6. kacheston

    kacheston Established Member

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    Hello, I'm the lead author of this paper, and thought I'd drop in and engage with any comments or questions about this piece. (I've done this before, and thought it was productive - but please do say if I should limit my engagement here to that of someone with experience/interest, rather than as a researcher. I originally signed up for an account on here so as to ask whether I should put myself forward for the Cochrane IAG - so my membership here predates this kind of engagement.)

    I just wanted to include an extended excerpt from the conclusion, in the hope that it might clarify some of the comments on this thread:

    '[...] In the first two years of the pandemic—during which Adams wrote and published her articles—there appeared to be an awareness of the need for such an open and curious approach, which centered the patient voice, and treated those living with long COVID as experts of both the symptoms they experience, and of the situation in which they find themselves (Miyake and Martin 2021; Anonymous 2020).

    As we write this, three years after the first lockdowns were imposed, the story appears to be changing. In December 2022, journalist Natalie Shure asked, in the New Republic,whether “We Might Have Long COVID All Wrong”—whether this might not be (as we read in Adams’s articles) a new disease caused by a novel virus, but instead might be “driven by psychosocial distress” or “triggered by the trauma of the pandemic itself” (Shure 2022). In January 2023, the authors of a comment, published in The Lancet Respiratory Medicine, similarly claimed that “a new paradigm is needed to explain long COVID” (Saunders et al. 2023). They propose a causal model in which biological, social, experiential, and psychological factors interact, and they include “available/legitimised illness narratives” as part of this causal model (Saunders et al. 2023). This is ambiguous—and the authors provide no elucidation—but the belief that illness narratives can be contagious or harmful is not novel (just as the constellation of symptoms of long COVID was no novelty to those who suffer from post-viral illnesses) (Showalter 2013). The authors of a 2008 paper on Gulf War Syndrome (GWS)—a contested condition naming persistent symptoms in veterans of the 1991 Gulf War—argued that “the transmission of rumour was a significant part of the very construction of the condition itself” (Cohn et al. 2008). The cause of GWS was ultimately (and recently) determined to be neither narrative nor rumor, however, but a gene-environment interaction, in which veterans with a weak variant of a particular gene were predisposed to experience chronic symptoms following low-level exposure to a nerve agent (Haley et al. 2022). Those living with GWS—whose testimonies were cited in the 2008 paper—were right all along: “something out there in the Gulf” (Cohn et al. 2008) really had made them ill. “It is crucial that those with [long COVID] are listened to in a way that, tragically, people with ME/CFS were not,” wrote the anonymous author of a Natureeditorial (Anonymous 2020). This is crucial indeed, and we must also ask: had Hillenbrand’s narrative been attended to with appropriate urgency, might Adams’s accounts have existed at all? These are cautionary tales: the literary critical approach that we have illustrated in this paper—which attends to narrative as a crucial insight into illness experience and analyses without imposing an ending or explanation—has never, it could be said, been more urgently needed.'

    I've highlighted what I felt were particularly relevant sections in bold, in the hope that it will make our critique clearer. We argue that the patient-centred approach that characterised early treatment of accounts of Long Covid was the correct one - and that we, collectively, are now veering off-piste and threatening to get things very wrong, all over again. (The reference to 'cautionary tales' speaks to academics - like Cohn et al, on which Wessely is an author - as well as to journalists like Shure.)
     
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  7. Trish

    Trish Moderator Staff Member

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    Thank you, @kacheston for joining the discussion. It is great to have you here and to be able to clarify your intentions with us. I did read very carefully through your conclusions section before I commented critically.

    Your article presents well its central narrative of an illness first coming to public and medical notice through patient's stories as told on social media, and the key role sufferers played in both naming and alerting medical authorities to their plight, and makes a neat parallel with the earlier situation with ME/CFS through quotes from Laura Hillenbrand. If you had stopped there, focusing your conclusion on what you draw from those two stories and the roles of Long COVID patient groups, I would have no problem with it.

    It's the introduction of a new slant in the 'Conclusion' that you had not explored at all in the main article as far as I remember that I find problematic, as making it the conclusion does not enable proper exploration of how problematic that approach is.

    Seeing the article from the perspective of someone with ME/CFS, I am pleased to see you tackling the question of legitimacy or otherwise of the Natalie Shure approach, and agree it's a serious problem which you have tried to highlight as a problem. However, I worry that such a brief reference to it that looks like an afterthought will not educate other readers that don't come to the article with the knowledge of this treatment of ME/CFS, GWI, LC and other long term diseases as psychogenic has been a problem for decades.

    I fear that raising the psychogenic/sociogenic version Shure promotes in the final paragraph with only a brief mention of the GWI story, may leave the overwhelming impression that the psychogenic argument has validity for LC and ME/CFS, even if not for GWI, especially if people are curious about Paul Garner and follow up the references to his articles including the last one where he basically throws us all under a bus and goes full on pyschobabble.

    Also, it's not true that the stuff about it being psycho/sociogenic only appeared in 2022 with Shure's article. It has been there all along, all over the media and medical articles, as we have documented on this forum with a long thread starting in July 2020, and lots of other threads.
    BPS attempts at psychologizing Long Covid

    The people who promote the psychosomatic view and treatment of ME/CFS have been all over it from the start. See, for example, this article about the problem from Prof Brian Hughes in July 2020.
    Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria

    As I said, it's a well written article and covers its main thesis well. It's the switch of focus in the conclusion without sufficient explanation that I find troubling.
     
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  8. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    By platforming Natalie Shure's article and Paul Garner's repetitive 'story' you invite readers to join in being literary critics all over our diseases. Some of us have not recovered the destruction and losses in our lives from Elaine Showalter's 1997 story-weaving 'Hystories'.

    We lost (or never accessed) even basic life-sustaining care while journalists, our friends and families, doctors and insurance and welfare assessors proclaimed Showalters literary narrative disease-denial ideas to be "Exciting" and "Thrilling".

    Frankly when Showalter published the press went berserk, reporting as if her literary criticism was groundbreaking science. ME was then taught on Literature courses as The example of 'Hysteria'. Responses to Shure's article was similar. How much more disease-denial and sidelining of proper science can the sick/disabled people with the named diseases survive? No more Literature in medicine. It's our lives at stake.
     
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  9. kacheston

    kacheston Established Member

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    Thank you, @Trish, for these comments. I really appreciate hearing your views (and, indeed, discussions on a previous thread on this site were instrumental in shaping how I frame my research in public fora - particularly in abstracts!)

    I do see your points about the conclusion. The critique is subtle - although I should add that it has come across strongly both to peer reviewers as well as to those attending the keynote upon which this paper was based. The material from Shure et al was introduced here, but its central argument (related to the approach to patient narrative, specifically those of Long Covid) was introduced in the first section, which ends with: 'Our suggestion here is that there remains a need to attend in detail, and with the tools of literary close-reading, to patients’ narratives qua narrative in order to develop more nuanced accounts of the phenomenology of long COVID and to understand the historical resonances in and of these experiences.' These references fit within this broader argument, which is essentially: let's not take these patient accounts out of context, or boil them down to quantitative data, or twist them to fit our own views and to the service of our own overarching narrative - but rather treat them as a unique and valuable source of insight into these experiences, and attend to them as such, with the tools of close and empathetic reading. My use of the first-person plural here is not accidental: in this paper we are speaking largely to academics within the critical medical humanities who may be influenced e.g., by the Lancet Respiratory Medicine piece cited from in the conclusion. Indeed there is a long history - such as the Cohn et al piece - of academics in other fields taking the 'illness narrative' concept, developed within the medical humanities, and using this for altogether more problematic aims. Of course the psychogenic explanation of Long Covid has been present from the start (and builds upon e.g., the historic and continued treatment of ME/CFS, as well as so-called "MUS"), but I felt that there did appear to be a significant change within academic circles at the time this article was submitted for publication (January 2023). I develop my critiques of these explanations further (and altogether less subtly!) in other pieces, including in the thesis I hope to submit in January 2024.

    This isn't at all to disregard or dismiss what you've said - which I absolutely take on board!
     
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  10. kacheston

    kacheston Established Member

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    Hi @LouBLou, thank you for your comment.

    The Showalter book remains deeply troubling - and an example to us all of how not to conduct this kind of research. This was how I framed this text in a recent conference presentation (at the Northern Network for Medical Humanities Research Congress, April 2023), which was well received.
     
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  11. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    There is no room for subtlety where narrative crosses over with disease-denial. Many of our personal illness stories are horrific, life and soul destroying, destructive of all sense of safety, not just losses but betrayals and rejections. The 'general public' appear to have an appetite for disease-denial narratives, and for comforting diversions from the hard and disturbing facts of abuses and cruelty inflicted on sick/disabled people when science and search for cures is displaced by diverse theoretical approaches to 'understanding' (and 'managing') long term illness.
     
    Last edited: Nov 15, 2023
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  12. kacheston

    kacheston Established Member

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    Nail on head here - and indeed one of the central threads of my PhD thesis (submitting soon).

    I hear you, and I know this to be true - experientially, as well as empirically.

    I also really do hear your points about subtlety. Bringing such a cutting, activist critique (as I have done e.g., in the Millions Missing demonstration I organised in Bristol, back in 2016) into academic spheres is a skill I am honing. I mean it with the greatest sincerity when I say that I am taking all of your insights on board.
     
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  13. Trish

    Trish Moderator Staff Member

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    Thanks for listening to our concerns thoughtfully, @kacheston. Best wishes with the thesis.
     
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