key: cord-0290388-pgglfg12 authors: Miyake, E.; Martin, S. title: Long Covid: quantitative and qualitative analyses of online Long Haulers' experiences, emotions and practices in the UK date: 2020-10-04 journal: nan DOI: 10.1101/2020.10.01.20201699 sha: 95fd462e29f940108b63758c984bcbcc1c7d3d9c doc_id: 290388 cord_uid: pgglfg12 RESEARCH QUESTION What are the experiences, emotions and practices of Long Haulers dealing with Long Covid symptoms and rehabilitation in the UK? AIMS & OBJECTIVES * to identify competing definitions of Covid-19 through quantitative and qualitative analyses of online Long Covid narratives in the UK; * to map UK Long Haulers' experiences, emotions and practices as articulated online; * to encourage further dialogue between patients, doctors and researchers to reassess existing definitions of Covid-19, with the collective aim of improving care and support for Long Haulers. DESIGN A rapid qualitative mixed methods study combining social media data (n=144,637 posts) with quantitative sentiment analysis and qualitative discourse analysis of themed post samples. SETTING Social media data studied were posts from people who self-reported having long-term symptoms of Covid-19. Data was analysed from the UK. All posts were anonymised to fit within ethics guidelines. No interventions were made. RESULTS Quantitative analysis found an output of 7,099 social media users who posted 144,637 posts. 27% of posts had negative sentiment, 12% were positive, 59% were neutral. The qualitative results demonstrate the negative impacts of competing definitions of Covid-19 for Long Haulers in the UK. These are mainly: time/duration; symptoms/testing; emotional impact; support and resources. CONCLUSIONS Through our analysis of UK Long Covid narratives online, we identify four main areas that need further urgent attention and reconsideration to improve support for Long Haulers: a) the time-frames assigned to Covid-19; b) the range of symptoms, which affects testing/diagnoses; c) the emotional/intellectual impact on Long Haulers; d) lack of resources and information. • Through social network sampling, we provide an initial mapping of the experiential, emotional and practical impacts Long Covid has had and continues to have on individuals in the UK, and the Long Hauler community as a whole. • We contribute towards the existing body of work conducted by doctors, researchers, and patients calling for the reassessment of existing definitions of Covid-19; to better understand Long Covid in order to improve support, guidelines and social measures offered to Long Haulers and their carers. • Demographics: our sample only analysed UK posts mostly on one social media platform due to the majority of posts coming from Twitter, and thus is not representative of the global population. • This highlights the need for: a) further comparative global studies; b) studies ensuring representation from those who might lack digital access and/or literacy); c) specific longitudinal and in-depth studies involving interviews/focus groups; d) a systematic cross-platform analyses to capture a greater demographic online. "@LongCovidSOS @COVID19Tracking @BodyPoliticUK @itsbodypolitic @UKCovid19Stats So, am a longhauler at week 24 with ongoing complex symptoms & liver, heart damage. Tested w/no antibodies. Trying new supplements so added NAC, turmeric & selenium...can others share experiences too pls?" [poster provides link to blog photo of supplements] Tweet published on 17/08/2020 After the initial peak period of Covid-19 in the UK (March-April, 2020), news and social media have been at the forefront of raising public awareness of Long Covid, a term describing long-term symptoms that persist after initially contracting Covid-19. Reports are usually made on/by those suffering from Long Covid, usually defined as, 'Long Haulers'. 1 Such public discourses surrounding Long Covid have coincided, if not even led to, more patient-led and clinical research, 2 and improved NHS support services for long-term Covid-19 patients. 3 However, the term, 'Long Covid' does not always appear in 'official' heath communications; furthermore, there is still an alarming discrepancy between what we classify as general UK 'official' definitions of Covid-19 (those appearing in governmental and public health communications), 4 and 'unofficial' definitions as articulated online by Long Haulers. Such a disconnect can lead to negative consequences, for both the individual and wider society. For example, official recovery times for Covid-19 mean that not only are people potentially emerging from self-isolation too early and thereby risking further (re)infections, 5 but also, it can have repercussions on diagnoses: symptoms outside of the official recovery times become defined as post-Covid at best (is it a second stage or merely a continuation?), or non-Covid at worst, leading to Long Haulers experiencing frustration, confusion and further anxiety. Through online data collected between 1 January to 28 August, 2020, this study presents an anatomy of Long Covid online narratives to begin to understand some of the experiential, emotional and practical dimensions of Long Covid. Data was collected at the start of the pandemic and towards the end of the first wave, to pinpoint the moments in the timeline when terms like 'Long Covid' or 'Long Haulers' began to gain significance. This gives us a better understanding of how 'long' is defined. As the above quote demonstrates, typically, Long Hauler narratives follow a consistent pattern that nearly always includes the following information: a) reference to the length of Covid-time endured in days/weeks/months; b) an articulation of symptoms and reference to an official testing and/or diagnosis (or lack thereof); c) emotional/intellectual response to Long Covid; d) sharing of information and resources. Using quantitative and qualitative analyses, this study therefore asks: What are the experiences, emotions and practices of Long Haulers dealing with Long Covid symptoms and rehabilitation in the UK? In answering this question, we make two urgently needed and significant contributions to Covid-19 research. Firstly, through a critical analysis of Long Covid themes, we identify key discrepancies between official and non-official accounts of Covid-19 in the UK that require urgent consideration from a medical, governmental and social perspective. Secondly, we provide an initial mapping of the experiential, emotional and practical impacts that Long Covid has had and continues to have on individuals and the Long Hauler community as a whole. Ultimately we argue that official definitions and understandings surrounding Covid-19 -from concepts of 'duration', 'symptoms', 'recovery' to 'containment' -need further urgent reconsideration as they seem to, at present, be inadequate in describing and meeting the needs of Long Haulers. In this way, we join the increasing number of doctors, researchers, and patients who are calling for a better understanding of Long Covid in order to improve support, guidelines and social measures offered to Long Haulers and their carers. Social media data was collected using media monitoring software Meltwater ™. 6 Posts were collected where there were mentions of long-term symptoms experienced after initially contracting , between the period of 1 January to 28 August, 2020. A boolean search term (see Appendix 2 for terms), including keywords and hashtags used to refer to people's experiences of long-term symptoms was used to sample data from Twitter, public Facebook pages, Reddit, Blogs, Forums and other smaller platforms. Sentiment analysis was used to measure the range of positive, negative and neutral feelings expressed by people towards their experience of symptoms, and any help received in managing those symptoms. Discourse analysis was conducted using text network analysis software Infranodus to measure themes and patterns occurring in discussions around Long Covid, as well as the betweenness centrality of subtopics -analysis of connections between subtopics that might link different types of conversation clusters together (e.g. discussions of persisting fever that also mention headaches, where mentions of headaches also occur in conversations about low blood pressure). While data was collected across all platforms, the majority of data found was on Twitter (143,000) with Facebook (1,081), Blogs (220), News posts on social media (174), Reddit (76), Forums (56) and other platforms (20) giving less results. Facebook posts sampled were at the overview level, with the number of posts recorded, but for ethics and restricted data access, full data from closed Facebook groups was not able to be analysed. In this case, open Twitter, forum and blog data was used. Once particular key themes were identified, individual posts were selected for textual analysis in order to draw out specific issues for a more qualitative interrogation of problematic issues at hand. 6 https://www.meltwater.com/en/products/social-media-monitoring . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020 . . https://doi.org/10.1101 As we move further in time away from the original peak of the pandemic in March-April 2020, more literature is emerging in attempts to specifically define Long Covid (Alwan, 2020; Mahase, 2020; Fraser, 2020; Geddes, 2020) . These are crucial in placing Long Covid as a term in its own right -especially as a medical condition -yet there are fewer studies on how Long Covid is understood and experienced by the general population i.e. the Long Haulers themselves. 7 The following provides a brief and quantitative overview as a background of Long Covid. Out of a total of 146,000 posts collected between 1 January to 28 August 2020 (Appendix 3a), the long-term/persistent symptoms of Long Covid were mentioned an average of 607 times a day. Mentions of long-term symptoms started around 19 May, and peaked with around 8,500 mentions 6 August, with continued activity until the end of the sampling period (28 August). The timing of mentions correlates with the peak of the pandemic's first wave (March -May 2020) , where the majority of these posts are from -see Appendix 3c). The reporting of long-term symptoms that had not resolved after initial onset of viral infection would then likely pick-up from May onwards, if people realised that they were indeed not feeling better, and were not alone in this after a period of 6-8 weeks of ongoing symptoms. The majority of Twitter mentions of Long Covid (Appendix 3) were retweets (91.3k), followed by quoted (commented upon) tweets (31.4k) and 9.21k replies, these shares were centred around 6.13k original tweets. The demographics below reflect the makeup of people posting across all platforms. The majority of people posting about Long Covid were female (59.4%), followed by males (40.6%, Appendix 3b), with the highest age range of posters re. Long Covid was 25-34 years old (47.4%), then 18-24 (29.1%) and then 35-44 (17.2%) -(Appendix 3). While the main occupation of people posting was as a health care worker, some identified as having additional roles, such as Author/Writer = 8.8%, Consultant = 8%, Executive manager = 7.2%, and Student = 4.8% (Appendix 3b). Discourse analysis of the conversations about Long Covid (Figure 1 ), found that social network discussion was quite diverse, with a fairly biased network structure, focused mainly on 7 topics (see below). Key themes of discussion were: is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint 1. Quantification of symptoms: type, duration and intensity; 2. Access to Covid Support Groups 3. Discussion of similarities of long-term chronic illness diseases such as ME and Chronic Fatigue Syndrome with Long Covid 4. Shared recovery rates 5. Anti-Covid-19 conspiracies 6. Discussion of overall acute Covid-19 symptoms mortality rates 7. Sharing of emerging research studies, experiences of interactions with doctors and health facilities and shared knowledge re. self-care with supplements and holistic practices. Chan (2020) explores how Covid-19 has changed the lived experiences of time --'pandemic temporalities' --one that is increasingly divergent and at times, creating new inequalities. We begin at a similar point of problematising the rise of various Covid-19 temporalities; in our case, the discrepancy between official and non-official ways of understanding and measuring Covid-19 as a temporally assessed medical condition, status and identity. UK Government guidelines define how long Covid-19 should last, how long one should selfisolate, and how long recovery lasts. These dominant temporalities officiate, regulate and define Covid-19 bodies in ways that cause confusion, distress and frustration amongst suffers of both short and long Covid-19: for example, as one poster states, 'thought I'd be ill for two weeks, instead it's been half a year'. Such typical posts indicate there is clearly a disconnect between the chronology of official ('two weeks') and non-official ('instead it's been half a year'-italics ours) Covid-19. This section explores how and why online Long Covid narratives expose the discrepancy between such official and non-official temporalities in the UK, but most importantly, how addressing this gap is an urgent matter for not just providing better support for Long Covid patients but for the understanding of Covid-19 itself. (i) Temporal status: symptoms, containment and recovery In the UK, at the peak of the first wave of the pandemic was between March-April (Appleby, 2020) , the official governmental guidelines stated that if one experienced any of the official symptoms (at this point on 12 March 'a new persistent cough' and 'a high fever', 8 one must self-isolate for 7 days. If the high fever persisted, one must keep isolating until the fever broke; however, one could emerge from self-isolation if the cough continued. As from 30 July, the self-isolation official guidelines changed, whereby one must keep isolating for 10 8 https://www.bbc.co.uk/news/uk-51857856 . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint days, 9 and can emerge from self-isolation if one 'feels ok' but must continue if one 'feels unwell'. 10 Such guidelines provide an official time-frame for everyone to (self)measure the duration of and recovery (and more recently, immunity) period from Covid-19. However, whilst governmental and health advice is crucial when monitoring, managing and controlling Covid-19, official narratives also produce normative temporalities against which sufferers of Covid-19 are measured and defined. Those displaying symptoms beyond official temporal parameters at best become defined as Long Haulers, or at worst, become diagnosed with another non-Covid-19 condition -sometimes as part of a Covid-19 diagnosis, but more often than not, as an independent diagnosis -falling within a given 'appropriate' timeframe, in this example, with hyperthyroidism, mitral valve disease & pericariditis (Appendix 4a). Similarly, official time-frames given on how fast and/or how long it should take to recover from Covid-19 also have an impact on both sufferers' wellbeing and the safety of the wider community. For example, there are many online reports of fevers lasting beyond the official expected time: how long should such individuals self-isolate? As such, sufferers' ability and timing of when they can leave home, when to return to work, when to seek further medical advice will be based on official 'normal' Covid-temporalities, which in the case of the above poster, was detrimental as she had to be admitted to hospital after the 'normal' period deemed safe (2 weeks). This brings to the forefront critical questions relating to safety and risk posed on both the individual, as well as society as a whole. (ii) Temporal self-identity: quantifying and qualifying the Covid-19 Self In the UK, official narratives of Covid-19 have also given rise to new alternative ways in which Covid-19 sufferers have self-measured, self-monitored, self-documented and selfexpressed their condition through counter-temporal narratives. In the absence of a clear temporal definition of Long Covid (when does Covid-19 become Long Covid?), 11 typical online narratives contain attempts to both quantify (Lupton, 2016a (Lupton, , 2016b Walker-Rettberg, 2014 ) and qualify the Covid-10 Self. Most online posts begin with either the number of days an individual has suffered from Covid-19 (e.g. 'Day 135') -a continuous temporal articulation with no 'cut-off' to Covid-19 -or reference to the exact date/month when their symptoms began. Other sites like the Body Project -a patient-led research project -have channels that define Covid-19 temporally, according to patients' temporal experience, as opposed to the official 'normal' timeframe: channels are divided into #over30-days, #over90-days, #over120-days, #over150-days, #over180-days. Such temporal articulations of Long Covid challenge official time-frames, and ultimately, definitions of Covid-19 by extending its temporal shelf life. Whilst the long-term effects of Covid-19 have become increasingly acknowledged by the medical profession --the recent NHS service dedicated to Covid-19 recovery being an example --such narratives often view Long Covid as a proceeding stage after the completed event of recovery: hence 9 https://www.bbc.co.uk/news/uk-53588709 10 https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-and-treatment/how-long-to-selfisolate/ 11 At the time of writing, there is even a lack of clarity regarding how long immunity lasts. The NHS website states: ''You probably have some immunity to coronavirus but it's not clear how long it will last.' https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-and-treatment/what-to-do-ifyou-get-symptoms-again/ . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint terms like 'post-Covid' or the phrasing 'Supporting your recovery after Covid-19' (italics ours). 12 By understanding Covid-19 as a cumulative, rather than finite temporal condition, Long Hauler narratives call for a reassessment of official time-frames that are sequential rather than continuous. This reassessment is crucial if we are to understand the process of recovery and containment in more effective ways that consider individual support and wellbeing as well as overall impacts on safety upon society. Similarly, these temporal narratives of Long Covid often attempt to qualify the Covid-19 self temporally by including a biographical timeline that describes and contrasts a point before and after the personal Covid-19 date: 13 the cited tweet (Appendix 4b) from Virgin Media News refers to the 'once fit and healthy' man who 'is still struggling'; many similar examples can be found mostly on news media: The Guardian has run a number articles on Long Covid and Long Haulers, 14 as has the BBC. 15 As time has moved on from the initial onset of the global pandemic, more and more (self)documented stories have emerged not just in social media but the wider popular media discourse that have helped to qualify the Covid-19 self as a body living through a continuous and unbroken pandemic temporality. Such discourses have provided a means to narrativise alternative autobiographical temporal trajectories (Giddens, 1991) , where the process of temporal self-reflection is indeed continuous. In discussing the chronological dimension of disease, Foucault states, 'the course of time occupies in the structure of this new knowledge the role in classificatory medicine of the flat space of the nosological picture' (italics by Foucault, 1963 Foucault, [2003 ): 96). Indeed, Long Covid narratives reveal the importance of considering time: to understand the various competing temporal narratives and experiences of Covid-19, and how these impact on the way an individual feels, is diagnosed, acts and makes sense of their condition. Considering the course of time as a source of knowledge is crucial as it can mean the difference between, for example, a diagnosis/ mis-diagnosis or returning to work/remaining in selfisolation. b) Individual articulation of symptoms: making Long Covid a collective phenomenon The previous section explored and problematised the discrepancy between official and nonofficial ways of measuring, defining and documenting Covid-19 chronology in the UK. In this section, we explore another key area in which there is a disconnect between official and non-official Long Haulers' definition of Long Covid: the articulation of symptoms. On the one hand, there are 'officially' recognised symptoms that are used to (self)diagnose Covid-19: at the peak of the pandemic, the UK communicated these as a 'new and continuous cough' and 'high fever'; as from 18 May, 16 'loss or change to your sense of smell or taste' was also 12 https://www.yourcovidrecovery.nhs.uk/ 13 We refer to the idea of 'qualified self' (Humphreys, 2018). 14 'Lingering and painful: the long and unclear road to coronavirus recovery' (1 May 2020); 'The coronavirus "long-haulers"' show how little we still know' (28 Jun 2020); 'I'm a Covid-19 "long-hauler". For us, there is no end in sight' (26 July, 2020); 'Brain fog, phantom smells and tinnitus: my experience as a Covid "long hauler"' (5 Aug 2020); 'The Covid long haul: why are some patients not getting better? (10 Aug 2020). 15 'Long Covid: 'Life might never be normal again' (15 Aug, 2020); 'Long Covid' patients need treatment programme, doctors say (8 Sep 2020); 'Covid 19: The Long Road to Recovery' (13 Sep 2020). 16 https://www.bbc.co.uk/news/health-52704417 . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10. 1101 included in the criteria, as well as other secondary symptoms (Flu-like with no fever; Flu-like with fever; Gastrointestinal; Fatigue (severe level one); Confusion (severe level two); Abdominal and respiratory (severe level three). 17 However, Long Covid sufferers report a whole other range of symptoms which do not officially fall under the Covid-19 criteria, something that has also been specifically observed and highlighted in the Covid-19 'Long Hauler' Symptoms Survey Report (Lambert et al, 2020) . As can be seen from Appendix 4b, online narratives of Long Covid show a much wider gamut of symptoms that suggest what is considered as "normal" needs reconsideration. This is a point that has been increasingly raised by doctors and researchers alike . Furthermore, Appendix 4b shows an example of the negative consequences to ignoring the gap between official and non-official symptom-based definitions of Covid-19: some have been mis-diagnosed; some have had existing chronic conditions collapsed into Covid-19; others have been dismissed by the medical profession altogether. Related, and perhaps most disturbing of all, as can be seen from these above tweets, there are extremely negative consequences to ignoring the gap between official and nonofficial symptom-based definitions of Covid-19: some have been mis-diagnosed; some have had existing chronic conditions collapsed into Covid-19; others have been dismissed by the medical profession altogether. These tweets -of which there are many -serve to highlight how understanding the discrepancy between official and nonofficial symptoms is a matter of critical importance if we are to provide more effective support and care, testing and other control measures, and effective use of medical and health resources. Whether contagious or not, an epidemic has a sort of historical individuality, hence the need to employ a complex method of observation when dealing with it. Being a collective phenomenon, it requires a multiple gaze; a unique process, it must be described in terms of its special, accidental, unexpected qualities (Foucault, 1963 (Foucault, [2003 ): 25) If the 'medical gaze' is directed through a very narrow symptomatic lens -just three criteria for Covid-19 -then all other symptoms, knowledge and diagnoses become individualised, rather than being considered as a collective phenomenon of the singular epidemic. Individual 'long hauler' narratives on social media brought into public existence the very concept of Long Covid. But such a discursive production of Long Covid should not be viewed as just an ontological matter; individualised articulations of symptoms are part of a collective phenomenon that suggest a more multiplicitous gaze needs to be adopted to understand the sheer range of Covid-19. As Stewart (2020) describes in his article written as a Long Hauler, 'the isolation of experience is like suffering the whole thing a second time '. 18 As such, understanding how and why Long Covid needs to be a collective, rather than individualised issue becomes crucial. 17 https://www.bbc.co.uk/news/health-51048366; these have also been communicated more recently via their Covid-19 recovery site: https://www.yourcovidrecovery.nhs.uk/ 18 Apart from the journalistic accounts already cited, also refer to Garner (2020) . is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint c) Affective Long Covid: mapping the emotional field One of the key considerations of Long Covid that needs urgent attention is the negative emotional consequences of being misdiagnosed and/or dismissed by the medical professions on grounds that an individual does not fit the 'normal' criteria for Covid-19. As the Twitter poster highlights in the tweet in Appendix 4.c), there is a real emotional cost of not just suffering from Long Covid, but being a victim of, for example, 'not being believed & getting labelled with anxiety'. If we are to provide better support and care for Long Covid sufferers, recognising the Long Hauler as an affective patient is crucial. In the following, we map out the emotional field of Long Haulers through an online analysis of the most used corelated hashtags used in posts about Long Covid experiences, and an analysis of emojis and how they are used to express emotions towards the symptoms/self-care of Long Covid. Figure 2 shows that the majority of sentiment around Long Covid was neutral as the increase of news articles with neutral headlines mentioning in general terms (e.g. "New national study on long-term health impacts of Covid-19 launched", or "Survey reveals impact of long-term Covid-19 symptoms on patients and doctors") the emerging occurrence of Long Covid was shared (between 29 July and 16 August). The rest of social media sentiment mentions, including posts by those experiencing Long Covid and news headlines -was overall negative (n= 39k posts) between the end of May and the end of August. In comparison, there were 15.1k positive posts, many of which discussed the growth of Long Covid support groups and knowledge about self-care ( Figure 3) . Therefore, analysis of the emotional field of Long Covid experiences on social media shows that while there was a peak of neutral sentiment between July and August -overall emotional sentiment towards Long Covid between June and August 2020 was negative. [ Figure 3 . Sentiment Key Drivers: Keywords behind topics of concern re. Long Covidcoloured by sentiment (red = negative, orange = neutral, green = positive)] Figure 3 shows a coloured word cloud, which visualises the range and mix of sentiment around specific keywords used with reference to Long Covid. Some words are not clearly red for negative, orange for neutral or green for positive -but are coloured with a gradient of red, moving through to orange then yellow, and then to green. This shows a mixed range of sentiment towards how Long Covid was discussed on social media and peoples' reaction to events, as they shared or quoted original posts discussing/describing worry about the lingering and sometimes changing types of symptoms of Long Covid (from muscle pain, to overall pain, brain fog, phantom smells, tinnitus, feeling exhausted and more -as well as counting the weeks and days that symptoms have been occurring for. There was also discussion of the lack of knowledge about recovery from Covid-19. Within the green and positive keywords, people spoke favourably of how helpful joining recommended support communities were, especially those on Slack (see the words "body" and "politic" at the top and bottom of the green wordcloud section). There were also discussions of similarities that Long Covid had to other chronic illnesses, such as Chronic Fatigue Syndrome/ME (Myalgic Encephalomyelitis). Therefore, discourse analysis looking at the sentiment of keywords used with reference to Long Covid shows two thirds of all posts (143,000) included a mixture of . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint negative to neutral (Figure 3 : red-orange-yellow), with one third of keywords using positive terms. [ Figure 4 . Collection of top emojis used in relation to posts mentioning Long Covid, and discourse behind them] The majority of emojis used within discussions regarding Long Covid were symbols that related to the range of emotions of confusion, sadness, crying, alarm, frustration, anxiety, and active lay investigation of the reasons behind Long Covid (as well as celebration -at being recognised by the medical establishment or final recovery from Long Covid). These emotions were generally represented by various smiley faces used in posts (Figure 4) . Other emojis used are linked to the nationality of Long Haulers , by a range of flags, from Swedish, to Italian, to Australian, Canadian, American, French, Greek, German, Israeli, Iranian and British (to name a few). Emojis were also linked to symbols for sending support and good vibes (e.g. shamrock, hearts, sunshine, flowers and praying hands), while others are linked to symbols for alarm, request for support or the hospital (SOS sign, siren and white cross in red square). Finally, some emojis used were symbols/arrows and fingers pointing towards links to articles, videos or other resources shared between users ( Figure 4) . Therefore, analysis of social media posts finds that emojis were used in quite expressive ways overallwith smiley faces showing a range of expressions of anxiety and confusion, and a strong link to national identity via flags, and the sharing of knowledge via links and podcasts. Overall, social media posts show that the topic of Long Covid is quite an emotional one, where sentiment, emotive words and expressive emoticons all range from negativity towards symptoms suffered, and a determination to share links and knowledge that might help others within the Long Hauler community. In all the actions and performance of the 'affective patient' in quantifying, sharing and supporting the experience of Long Covid seems to convey a very much embodied and emotive process. In the absence of sufficient and widely accessible medical knowledge surrounding Long Covid (as opposed to Covid-19 more generally) -not to mention the competing definitions of Covid-19 in the UK, as explored above -news and social media have taken its role as an important if not the only information resource on Long Covid. Social media has not only become a site for the articulation and documentation of Long Covid from the affective patient, but also where one can find patient-led knowledge through the sharing of resources. This is particularly the case with initiatives like the Body Politic Project 19 which specifically promotes itself as a patient-led research project, 20 encouraging contributions from all Covid-19 sufferers. We have identified four main types of information Long Haulers in the UK share on social media as a direct result of an absence within official channels and domains of knowledge: is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint • News media: as Appendix 4c(ii) demonstrates, there are a significant number of posts that share news media articles, usually as a way of validating a Long Hauler's experience. This is particularly concerning when new media sources are used in contrast to official diagnoses or guidelines, presented as a more realistic reflection of Long Covid. • Support network: with an image of the countryside track against a blue sky, a doctor posts: "170 days (~6 months) after the onset of #COVID_19 I have just managed 7.7 miles and 2250ft of ascent in 3h 37m in the Yorkshire Dales. Maybe tomorrow I will go back down with #CFS #LongCovid? I don't know who does, but I mention this to give hope to all those suffering it." Two types of quantitative self-tracking information come together to form a qualitative message of hope: the Day-based temporal articulation of Long Covid, alongside the data generated by the exercising Self. • Practical hints and tips: Appendix 4d brings many aspects discussed thus far together: the individualised and communal date-based Covid-19 temporal narrative ('Day 198'); the sharing of a news/media article in the absence of official/medical guidance ('thefirstepidemic.com') ; support offered to the community through the affective patient's sharing of experience ('to all those still struggling: keep the faith. With time (and supplements) you will heal'); and lastly, the sharing of practical advice ('I was taking many of the supplements he mentioned: Glutathione and NAC made a big difference. I also took Zinc, C, D etc.' (Appendix 4d)) We hope that by highlighting these areas, we reinforce the arguments presented more recently by doctors and clinicians: that indeed, there is 'a frustrating lack of access to appropriate investigations for symptomatic individuals and their GPs due to lockdown and a reduction of services', and most importantly, how despite the best efforts, 'many affected individuals have been dismissed with the label of "anxiety" and have endured incredulity and a lack of sympathy or support' (Lokugamage et al, 2020) . More consideration needs to be given towards acknowledging and communicating information regarding Long Covid more effectively, as well as providing better patient support that aids physical and emotional wellbeing. As outlined in the Introduction, there is a promising increase in the number of studies and research on Long Covid and improved Long Covid patient care in the UK. However, as our article has hopefully demonstrated, there is still a way to go in closing the gap between official definitions of Covid-19 and those articulated by Long Haulers. Lessening this gap is crucial in order to not just understand Long Covid, but Covid-19 itself: from its temporal and symptomatic dimensions, emotional and practical impacts, right through to the way health communication frames the condition and guidelines for Long Haulers and their carers. Our analysis of UK Long Covid narratives online contributes towards understanding some of the experiential, emotional and practical dimensions of Long Covid, identifying four main areas that need further urgent attention and reconsideration: a) the time-frames assigned to Covid-19; b) the range of symptoms which affects testing/diagnoses; c) the emotional/intellectual impact on Long Haulers; d) lack of resources and information. Whilst is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020 . . https://doi.org/10.1101 services and support groups have begun to emerge in the UK, we argue that until official definitions and understandings surrounding Covid-19 are reconsidered, doctors and other services will be limited in their capacity to provide better support, guidelines and social measures for those suffering from Long Covid, as well as their carers. Please refer to Appendix 5. This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. PATIENT CONSENT FORM: n/a DATA SHARING: As our raw data consists of social media posts, this data is non-shareable in accordance with GDPR protocols and related ethical issues. Please refer to our Protocol (Appendix 5) SUPPLEMENTARY AND RAW DATA: As our raw data consists of social media posts, this data is non-shareable in accordance with GDPR protocols and related ethical issues. Please refer to our Protocol (Appendix 5) . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020 . . https://doi.org/10.1101 Appendix 1 We aim to gather accounts of the experiences of people experiencing Long Covid and the challenges and constraints they might encounter during (and possibly after) the Covid-19 pandemic. Definition of Long Covid: Long-term symptoms of Covid-19 after initial infection with the virus. • Post contains indecision, uncertainty about symptoms/support/other-experiences of Long Covid. • Post contains both disapproving and approving information. • Post communicating overall trust and satisfaction with help/support/recovery/selfcare from Long Covid in the context of the Covid-19 pandemic. • Posts are affirming of Long Covid recovery and experiences of support/selfcare/guidance. • Post describes the importance of Long Covid. • Post contains negative attitude(s)/arguments against current Covid-19 treatment / guidelines / support / Long Covid. • Post discourages the following of recommended treatment / guidelines / support related to Long Covid. • Post shares bad experiences of the effect/support/recovery/treatment of Long Covid. • Post contains no elements of uncertainty, positive or negative content. . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint • Post contains general statement(s) or link(s) to item(s) (e.g. news articles/papers) with no expression of sentiment. • Post includes factual statements/recommendations about Long Covid, but no other sentiment. Boolean Search term for Long Covid (("coronavirus" OR "#coronavirus" OR "corona" OR "Covid-19" OR "COVID 19" OR "COVID19" OR "#COVID19" OR "COVID_19" OR "COVID" OR "severe acute respiratory syndrome coronavirus 2" OR "severe acute respiratory syndrome coronavirus 2" OR "2019-nCoV" OR "SARS-CoV-2" OR "2019nCoV" ) AND ("longcovid*" OR covid1in10 OR covid1in20 OR longhaulcovid)) . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint Post by health care professional discussing the time-frame of their experience of Long Covid "1/ I was COVID positive in April, thankfully only had mild symptoms and returned to work on the COVID wards after 2 weeks. In the last month, I've been admitted to hospital twice and been diagnosed with hyperthyroidism, mitral valve disease & pericariditis…" Post published on 14/07/20 Tweet thread (one "Long Hauler") quantifying symptoms duration, number and intensity. Tweet 1. "#Long Covid over 170 days: tremors, chest pain, burning sensation, pin and needles pain, face twitching, brain fog, chronic fatigue, abdominal pain, ginger discoloration, double vision being blurry vision, tingling, neuropathy, GI problem, headache, nausea, -" Tweet 2. "..pain in back between shoulder blade, shortness of breath, left arm weakness, sinusitis, some of the symptoms have subsided, and some have persist" Tweet published on 28/08/20 Original tweeted statement from GP/researcher: "Point taken, but hear the patients who are screaming "this is real". We need to listen to them, partner with them. They know this disease better than we do. #longcovid" Tweeted reply (from GP): "We should listen to patients and their narratives, but at the same time (as you know) that doesn't make them doctors. We are supposed to know things they don't although they have an experience we don't. They don't know disease and medicine better then we do." Tweeted replies (from GP with Long Covid): 1. "@X @X Some patients unfortunately do. Some of us were misdiagnosed and left at home in life threatening conditions, repeatedly, because we didn't match the #COVID19 symptoms MDs considered relevant. Not a case that the persistence of symptoms in #Long Covid was recognized by patients" 2. "Some #COVID19 patients are also MDs themselves, or researchers, or experts in illness/disability from . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020 . . https://doi.org/10.1101 different perspectives, or had a training in medicine. They can read scientific papers, including the early Chinese papers that were disregarded by MDs in the West #LongCovid" 3. "Many #COVID19 left at home in said life threatening conditions were also forced to experiment with medication and feed themselves with medicines they had at home, taking them off label with no medical guidance, in the absolute unknown #Long Covid" Tweet calling for patients and doctors to work together, rather than patients being attacked for not fitting within the standard medical diagnosis model: ..so I dragged myself back in Manhattan to be disbelieved by another doctor" I've read so many accounts like this. The dominant patient experience of #longcovid is *being disbelieved*. Fellow doctors, we need to acknowledge and address this problem. Tweet published on 05/08/20 Post discussing concern re. chronic illness definitions being mixed up with general fatigue definitions currently related to Covid-19: I'm so unbelievably sick of people conflating #MyalgicEncephalomyelitis/#ME, which is a disease of the nervous system and sometimes referred to as #ChronicFatigueSyndrome/#CFS, with the common symptom of #ChronicFatigue. They are NOT the same thing. #PwME #Long Covid #Medtwitter is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020 . . https://doi.org/10.1101 Example of frustration with interesting potential term to use in paper "covid gaslighting" by doctors who trivialise long term symptoms as general anxiety: Feel awful about #LongCovid gaslighting. Doctors & others treated me w/respect in immediate (sic) aftermath of a viral infection in 2015, but months later, those same symptoms were transferred into an "anxiety" (read: "hysteria") "diagnosis" from which it's impossible to escape. Post published on 02/08/20 Discussion thread of self-care of Long Covid symptoms with supplements, and emerging research into these practices by clinicians. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint BACKGROUND After the initial peak period of Covid-19 in the UK (March-April, 2020), news and social media have been at the forefront of raising public awareness surrounding 'Long Covid' and the experience of 'Long Haulers'. 21 Whilst such public discourses surrounding Long Covid has coincided, if not even led to, more patient-led and clinical research and improved support services for long-term Covid-19 patients, there is still an alarming discrepancy between official definitions of Covid-19 and those articulated online by Long Haulers. Through quantitative and qualitative analyses of data collected between 1 January to 28 August, 2020, this study identifies key areas where official and non-official narratives of Covid-19 in the UK differ, highlighting the negative consequences these can have on Long Haulers. What are the experiences, emotions and practices of Long Haulers dealing with Long Covid symptoms and rehabilitation in the UK? • to identify competing definitions of Covid-19 through quantitative and qualitative analyses of online Long Covid narratives in the UK; • to map UK Long Haulers' experiences, emotions and practices as articulated online; • to encourage further dialogue between patients, doctors and researchers to reassess existing definitions of Covid-19, with the collective aim of improving care and support for Long Haulers. In this study, we will use a mixed methods (quantitative and qualitative) rapid appraisal design. Rapid appraisals were developed to collect and analyse data in a targeted way within limited timeframes (Green and Thorogood 2013) . A rapid appraisal design often combines two or more methods of data collection and then uses triangulation from different sources as a form of data validation (Harris et al. 1997) . It is based on an iterative process of collection and analysis, where "the researchers begin with information collected in advance, and then progressively learn from each other and from information provided by semi-structured interviews and direct observations" (Beebe 1995: 48) . The study will combine social media data collection and both quantitative and qualitative analysis of social media. 21 https://www.nature.com/articles/d41586-020-02598-6 . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint We will carry out social media analysis using a rapid media analysis technique we have developed, which is informed by the qualitative news frame analysis method proposed by Linstrom and Marais (2012) . We will also use sentiment and hashtag analysis tools via the TalkWalker 22 platform to digitally quantify and assess sentiment and trends within the larger social media dataset. Textual analysis will be conducted on individual posts where appropriate. Qualitative text and discourse analysis will be conducted using text network analysis software Infranodus to measure themes and patterns occurring in discussions around Long Covid -analysis of connections between subtopics will be made to understand key themes that might link different types of conversation clusters together. This analysis aims to understand the experiences and views of those experiencing Long Covid in how they perceive their symptoms and healthcare delivery during the Covid-19 outbreak, through social media conversations. Our sample will concentrate on UK discussions across all social media platforms, including Twitter and relevant content on Reddit, Facebook (publicly available groups), blogs and forums from January to August 2020. Using the media monitoring software 'Meltwater', we will conduct a Boolean query keyword search. We will also conduct audience segmentation analysis to understand the biographies and interests of key influencers/groups within the social media Long Covid communityincluding analysis of ongoing support groups that convene via hashtag-chat sessions discussing key topics of concern re. Long Covid symptoms and rehabilitation availability and the real-world application of government health policy affecting the treatment of patients and their recovery from Long Covid. Once the initial coding is complete, we will clean the dataset of duplicates or semiduplicates. We will use semantic discourse and topic analysis in order to understand the most frequent, weighted and connected keywords, viral hashtags, emojis and prioritised themes of discussion, clusters of topics, with a primary focus on the UK. The analysis will be put into context of the experience of Long Covid outbreak situation in the UK, and the corresponding response of the government and public to the operation of the health system. All of the data obtained from social media sources will be analysed using the software packages TalkWalker. The analysis will explore the most frequent topics originating from the posts in relation to the research questions guiding this study. The data will be imported into Infranodus and analysed using discourse analysis . is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted October 4, 2020. . https://doi.org/10.1101/2020.10.01.20201699 doi: medRxiv preprint The researchers will maintain the anonymity of all public social media posts cited. Any identifying features such as the names or photos will be removed from posts and data retrieved from social media. In the study, the data will be anonymised and stored securely on password-protected computers. Social media data will be anonymised and cleaned of all username data, which will be replaced with numerical participant codes. The data can only be accessed and identified by University of Strathclyde and University of Oxford researchers. Dr Sam Martin will act as the data controller of such data for the study. She will process, store and dispose of all data in accordance with all applicable legal and regulatory requirements, including GDPR and DPA 2018. Data will not be transferred to any party not identified in this protocol and are not to be processed and/or transferred other than in accordance with the participants' consent. We aim to share the findings with different groups of stakeholders including such as the Guardian and The Conversation. 1 September 2020 Final report (completed) 23 September 2020 Chart of the week: The steep rise and slow decline of Covid-19 cases across the UK What exactly is mild Covid-19? BMJOpinion Covid 19: The Long Road to Recovery Long Covid: 'Life might never be normal again Coronavirus: Virus isolation period extended from seven to 10 days The coronavirus 'long-haulers' show how little we still know. The Guardian What are the long-term health impacts of coronavirus? Patient Pandemic temporalities: Distal futurity in the digital Capitalocene Coronavirus: 'Long Covid' patients need treatment programme, doctors say Brain fog, phantom smells and tinnitus: my experience as a Covid 'long hauler'. The Guardian Lingering and painful: the long and unclear road to coronavirus recovery. The Guardian Long term respiratory complications of covid-19 The Birth of the Clinic: an Archaeology of Medical Perception For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion Why strange and debilitating coronavirus symptoms can last for months Modernity and self-identity: self and society in the late modern age Management of postacute covid-19 in primary care The Covid long haul: why are some patients not getting better? The Guardian The Quantified Self. Cambridge and Malden: Polity Press Lupton, D (2016b) The diverse domains of quantified selves: self-tracking modes and dataveillance Covid-19: What do we know about "long covid InfraNodus: Generating Insight Using Text Network Analysis My experience of covid-19-not just another experience Seeing Ourselves Through Technology: How We Use Selfies, Blogs and Wearable Devices to See and Shape Ourselves Basic concepts and techniques of rapid appraisal Qualitative methods for health research Management of postacute covid-19 in primary care Rapid assessment procedures: A review and critique Qualitative news frame analysis: A methodology InfraNodus: Generating insight using text network analysis Appendix 4Appendix 5