The fragile process of Homecoming – Young women in recovery from severe ME/CFS

Abstract:

Purpose: To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present.

Method: A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants.

Results: The first story describes how one participant made a recovery by testing her body’s tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained.

Conclusion: Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.

Source: Krabbe SH, Groven KS, Schrøder Bjorbækmo W, Sveen U, Mengshoel AM. The fragile process of Homecoming – Young women in recovery from severe ME/CFS. Int J Qual Stud Health Well-being. 2023 Dec;18(1):2146244. doi: 10.1080/17482631.2022.2146244. PMID: 36367977. https://www.tandfonline.com/doi/full/10.1080/17482631.2022.2146244 (Full text)

Support amid uncertainty: Long COVID illness experiences and the role of online communities

Abstract:

Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored.

Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.

Source: Russell D, Spence NJ, Chase JD, Schwartz T, Tumminello CM, Bouldin E. Support amid uncertainty: Long COVID illness experiences and the role of online communities. SSM Qual Res Health. 2022 Dec;2:100177. doi: 10.1016/j.ssmqr.2022.100177. Epub 2022 Oct 4. PMID: 36212783; PMCID: PMC9531408. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9531408/ (Full text)

Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods

Abstract:

Some people experience prolonged symptoms following an acute COVID-19 infection including fatigue, chest pain and breathlessness, headache and cognitive impairment. When symptoms persist for over 12 weeks following the initial infection, and are not explained by an alternative diagnosis, the term post-COVID-19 syndrome is used, or the patient-defined term of Long Covid. Understanding the lived experiences of Long Covid is crucial to supporting its management. However, research on patient experiences of Long Covid is currently not ethnically diverse enough.

The study aim is to explore the lived experience of Long Covid, using qualitative interviews and art-based methods, among people from ethnically diverse backgrounds (in the UK), to better understand wider systems of support and healthcare support needs. Co-created artwork will be used to build on the interview findings. A purposive sampling strategy will be used to gain diverse experiences of Long Covid, sampling by demographics, geographic locations and experiences of Long Covid. Individuals (aged >18 years) from Black and ethnic minority backgrounds, who self-report Long Covid symptoms, will be invited to take part in a semi-structured interview.

Interviews will be analysed thematically. A sub-sample of participants will be invited to co-create visual artwork to further explore shared narratives of Long Covid, enhance storytelling and increase understanding about the condition. A patient advisory group, representing diversity in ethnicity and experiences of Long Covid, will inform all research stages. Stakeholder workshops with healthcare professionals and persons, systems or networks important to people’s management of Long Covid, will advise on the integration of findings to inform management of Long Covid. The study will use patient narratives from people from diverse ethnic backgrounds, to raise awareness of Long Covid and help inform management of Long Covid and how wider social systems and networks may inform better healthcare service access and experiences.

Source: Smyth N, Alwan NA, Band R, Chaudhry A, Chew-Graham CA, Gopal D, Jackson M, Kingstone T, Wright A, Ridge D. Exploring the lived experience of Long Covid in black and minority ethnic groups in the UK: Protocol for qualitative interviews and art-based methods. PLoS One. 2022 Oct 3;17(10):e0275166. doi: 10.1371/journal.pone.0275166. PMID: 36191007; PMCID: PMC9529129. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9529129/ (Full text)

Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives

Abstract:

Background: Healthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid.

Methods: Data were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved.

Results: The submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants’ creative narratives.

Conclusion: The results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms.

Patient and public contribution: Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts-based workshops specifically for people with Long Covid.

Source: Pearson M, Singh P, Bartel H, Crawford P, Allsopp G. Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives. Health Expect. 2022 Sep 23. doi: 10.1111/hex.13602. Epub ahead of print. PMID: 36148648.  https://onlinelibrary.wiley.com/doi/10.1111/hex.13602 (Full text)

Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment

Abstract:

While we know a lot more about Long Covid today, patients who were infected with Covid-19 early on in the pandemic and developed Long Covid had to contend with medical professionals who lacked awareness of the potential for extended complications from Covid-19. Long Covid patients have responded by labeling their contentious interactions with medical professionals, organizations, and the broader medical system as “gaslighting.” We argue that the charge of medical gaslighting can be understood as a form of ontological politics. Not only do patients demand that their version of reality be recognized, but they also blame the experts who hold gatekeeping power over their medical care for producing a distorted version of said reality.

By analyzing results from an online survey of Long Covid patients active on social media in the United States (n ​= ​334), we find that experiences of contention and their reframing as “gaslighting” were common amongst our respondents. In short answer responses about their experience obtaining medical care for Long Covid, our respondents described encountering medical professionals who dismissed their experience, leading to lengthy diagnostic odysseys and lack of treatment options for Long Covid. Even though we are limited by characteristics of our sample, there is good reason to believe that these experiences and their contentious reframing as medical gaslighting are exacerbated by gender, class, and racial inequalities.

Source: Au L, Capotescu C, Eyal G, Finestone G. Long covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment. SSM Qual Res Health. 2022 Sep 7;2:100167. doi: 10.1016/j.ssmqr.2022.100167. Epub ahead of print. PMID: 36092770; PMCID: PMC9448633.  https://www.sciencedirect.com/science/article/pii/S2667321522001299 (Full text)

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Abstract:

Purpose: To evaluate the psychometric properties of the patient-reported outcome measurement information system® (PROMIS) short forms for assessing sleep disturbance, sleep-related impairment, pain interference, and pain behavior, among adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: Data came from the Multi-Site ME/CFS study conducted between 2012 and 2020 at seven ME/CFS specialty clinics across the USA. Baseline and follow-up data from ME/CFS and healthy control (HC) groups were used to examine ceiling/floor effects, internal consistency reliability, differential item functioning (DIF), known-groups validity, and responsiveness.

Results: A total of 945 participants completed the baseline assessment (602 ME/CFS and 338 HC) and 441 ME/CFS also completed the follow-up. The baseline mean T-scores of PROMIS sleep and pain measures ranged from 57.68 to 62.40, about one standard deviation above the national norm (T-score = 50). All four measures showed high internal consistency (ω = 0.92 to 0.97) and no substantial floor/ceiling effects. No DIF was detected by age or sex. Known-groups comparisons among ME/CFS groups with low, medium, and high functional impairment showed significant small-sized differences in scores (η2 = 0.01 to 0.05) for the two sleep measures and small-to-medium-sized differences (η2 = 0.01 to 0.15) for the two pain measures. ME/CFS participants had significantly worse scores than HC (η2 = 0.35 to 0.45) for all four measures. Given the non-interventional nature of the study, responsiveness was evaluated as sensitivity to change over time and the pain interference measure showed an acceptable sensitivity.

Conclusion: The PROMIS sleep and pain measures demonstrated satisfactory psychometric properties supporting their use in ME/CFS research and clinical practice.

Source: Yang M, Keller S, Lin JS. Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms. Qual Life Res. 2022 Jul 27. doi: 10.1007/s11136-022-03199-8. Epub ahead of print. PMID: 35896905.  https://pubmed.ncbi.nlm.nih.gov/35896905/

DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Abstract:

Background: Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy.

Methods: Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants’ saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants’ genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology.

Discussion: The DecodeME study has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online ( www.decodeme.org.uk ). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

Source: Devereux-Cooke A, Leary S, McGrath SJ, Northwood E, Redshaw A, Shepherd C, Stacey P, Tripp C, Wilson J, Mar M, Boobyer D, Bromiley S, Chowdhury S, Dransfield C, Almas M, Almelid Ø, Buchanan D, Garcia D, Ireland J, Kerr SM, Lewis I, McDowall E, Migdal M, Murray P, Perry D, Ponting CP, Vitart V, Wolfe JC. DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome. BMC Neurol. 2022 Jul 19;22(1):269. doi: 10.1186/s12883-022-02763-6. PMID: 35854226. https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-022-02763-6 (Full text)

 

The teachings of Long COVID

Long COVID is the state of not recovering several weeks following acute infection with SARS-CoV-2, whether tested or not. It is a patient-made umbrella term for this condition, which may involve multiple pathologies. The underlying mechanisms are still largely unknown, but hypotheses include inflammatory or autoimmune processes, organ damage and scarring, hypercoagulability, endothelial damage, or even persistent viral protein in the body,. Based on the UK Office for National Statistics (ONS) estimates, the prevalence of Long COVID is around 1 in 7 people at three months from the infection, and it is most common in working-age adults, but also occurs in other age groups, including children. More recent ONS figures indicate that there are 376,000 people in the UK who have had Long COVID for at least one year. It has a wide range of symptoms, but the most common are exhaustion, breathlessness, muscle aches, cognitive dysfunction, including poor memory and difficulty concentrating, headache, palpitations, dizziness and chest tightness or heaviness. The nature of the symptoms is mostly relapsing, resulting in significant dysfunction and limitations in a relatively large proportion of sufferers,.

It seemed nobody had thought about the enormous implications of chronic disease as a result of letting SARS-CoV-2 spread through the community, assuming it would all be fine for those classed as non-vulnerable.

During the past year, I have been advocating for Long COVID, as well as doing research on it. I experienced it after developing COVID-19 symptoms in March 2020. My acute illness was not severe, so I did not go to hospital, as the medical advice at the time was to isolate at home, and that, like flu-like illness, one would be completely recovered within a week or two. This also meant I did not have access to testing to confirm infection, as community testing stopped in the UK on March 12, 2020. Although I felt improvements, the illness did not go away after several weeks. Some of my symptoms, the chest heaviness, muscle aches, and fatigue, remained fluctuating for months, while new symptoms, such as palpitations, also appeared. Every time I felt it was almost over, symptoms came back. I started recognising and avoiding some of the activities that triggered the symptoms, but I could not always work out what caused the relapses.

The constant cycle of disappointment at not completely recovering was devastating. The never-ending symptoms and their effect on my daily activities were a cause for worry. It was somewhat reassuring that so many others were posting similar stories on social media, but it was a struggle to get Long COVID recognised by governments and national health agencies as a serious problem back then. It seemed nobody had thought about the enormous implications of chronic disease as a result of letting SARS-CoV-2 spread through the community, assuming it would all be fine for those classed as non-vulnerable. As I wrote in a previous piece ‘death is not the only thing to count in this pandemic, we must count lives changed’. I urged public health agencies to quantify and define Long COVID,. Over the last year, I have been engaging in forums to raise awareness on its significance, impact, and scale. I have also worked with other people living with Long COVID to research the characteristics of the illness. Through this journey, I have learnt some lessons that apply not only to Long COVID but more widely to pandemic preparedness, equality, and social justice, and how medicine and society deal with similar chronic conditions.

The first lesson was how much our understanding, as scientists or physicians, can be enriched by patient experience. This includes genuine patient involvement in all stages of science and healthcare design, but may also include us wearing the two hats of patient and expert. Unfortunately, a lot of healthcare professionals and health scientists across the world caught SARS-CoV-2 with many suffering the consequences of Long COVID. In the UK, 3.6% of all healthcare staff were estimated to have Long COVID. The experience of the illness not only brings deep understanding and appreciation of its real-life impact, but also of the questions that need answering. People with lived experience must have a central role in shaping the research and services agenda because they are experts in living with the disease. Even with substantial patient involvement in shaping care and research, some sections of society will always have more representation in decision-making forums than others. Therefore, without seeking insight and input from those usually unheard, our response will always be inadequate.

Another lesson was that we need systems in place that measure morbidity in addition to mortality. We have always been better at measuring the acute over the chronic, but it is the latter that has the most long-lasting impact on societies. At the beginning of the pandemic, long-term illness and ensuing disability due to COVID were completely dismissed and did not shape policy decisions. This is partly because they were not adequately quantified, and the models informing policy and public opinion used short-term outcomes of hospitalisation and death. It is disheartening to still frequently see recovery confused with short-term survival or hospital discharge. We need systems to record recovery and continued illness following infection, accurately and universally. Disease registers have been employed for other chronic conditions such as cancer and could prove very valuable for Long COVID as well as other post-viral illnesses.

A third lesson was that we must challenge stereotyped narratives that tend to dominate the Long COVID discourse. Long COVID has been predominately pictured as something that mainly ails middle-aged women. However, the difference in the prevalence between women and men seems relatively small (15% vs 13% according to ONS estimates). Women have experienced not being believed about their symptoms with other similar chronic conditions, such as chronic fatigue syndrome and fibromyalgia. This has the potential to lead to stigma and institutional discrimination. When the dismissal of concerns and symptoms by service providers and employers is compounded by demographic, ethnic, social, and economic pre-existing structural disparities, the injustice is exacerbated. The stigma can become internalised potentially depriving people with lived experience of Long Covid from recognition, support, and services because they do not want to face the dismissal, disbelief, and denial. We must not repeat past mistakes of stereotyping and pushing those already disadvantaged away from seeking help.

To avoid the effect of stereotyping, stigma, and variation in recognition, and to measure the effect of Long COVID on systems, the economy, and the whole of society, we need to agree case definitions as soon as possible. Science on the topic is evolving and case definitions will need to be frequently updated, but we cannot afford to wait. People living with Long COVID need proper clinical assessments, medical investigations, and a diagnosis. A diagnosis is necessary not only for treatment and rehabilitation purposes, but also to maintain livelihoods. Without it, people with what are considered ‘unexplained symptoms’ may lose out on employment rights and benefits, leading to financial hardship that can exacerbate their illness. The diagnosis could simply be an umbrella term like Long COVID that encompasses some uncertainty about how it manifests. A case definition for research can be more stringent than that for the purpose of surveillance. Criteria used for clinical diagnosis must be the most inclusive because people’s lives depend on them (11). The case definitions must be based on clinical assessment and not be dependent on laboratory tests, since there is a range of problems with these, including access, affordability, and accuracy.

Though perhaps the most important lesson that Long COVID taught me, and I hope it can teach others, is that showing humility in the face of uncertainty is the first right step to deal with a phenomenon that we do not fully understand. Throughout the pandemic, I have seen uncertainty in science, medicine and public health communicated with certainty. This has been largely damaging, and that includes the case of Long COVID. The possibility that COVID-19 might not be a short illness for all, was entirely dismissed from public communication, despite multiple examples of devastating long-lasting effects of other viruses. Assumptions have been made about the nature, cause, and mode of treatment of Long COVID, despite a lack of evidence to support them. Acknowledging we do not know everything does not mean inaction. It means informed action with honesty, which may involve applying the precautionary principle until we know more.

The pandemic is not over, and it is peaking in many parts of the world. Therefore, preventing Long COVID should be high on everyone’s agenda. Long COVID messaging must be incorporated in all prevention policies including vaccination and non-pharmacological interventions. The effect of COVID-19 vaccines in modifying the course of Long COVID is still uncertain and under investigation. In the meantime, the primary purpose of vaccination in relation to Long COVID should be to prevent it in those who do not have it, and to prevent re-infection in those who do.

As for me, I am grateful that my Long COVID has been a lighter guest in 2021, with less frequent and shorter visits. This is sadly not the story of everybody who is living with it, with many not improving, or deteriorating over time. Let us, for their sake, not repeat past mistakes and learn from the global experience of this phenomenon to help all people living with similar under-researched chronic conditions, and prevent more from happening.

Read the full article HERE.

Source: Alwan NA. The teachings of Long COVID. Commun Med (Lond). 2021 Jul 12;1:15. doi: 10.1038/s43856-021-00016-0. PMID: 35602198; PMCID: PMC9053272. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9053272/ (Full text)

Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community

Abstract:

Background: In 2020, the long-lasting effects of the Covid-19 virus were not included in public messages of risks to public health. Long Covid emerged as a novel and enigmatic illness with a serious and life-changing impact. Long Covid is poorly explained by objective medical tests, leading to widespread disbelief and stigma associated with the condition. The aim of this organic research is to explore the physical and epistemic challenges of living with Long Covid.

Methods: Unlike any previous pandemic in history, online Covid communities and ‘citizen science’ have played a leading role in advancing our understanding of Long Covid. As patient-led research of this grassroots Covid community, a team approach to thematic analysis was undertaken of 66 patient stories submitted online to covid19-recovery.org at the beginning of the Covid-19 pandemic between April and September 2020.

Results: The overriding theme of the analysis highlights the complexities and challenges of living with Long Covid. Our distinct themes were identified: the life-changing impact of the condition, the importance of validation and how, for many, seeking alternatives was felt to be their only option.

Conclusions: Long Covid does not easily fit into the dominant evidence-based practice and the biomedical model of health, which rely on objective indicators of the disease process. Patient testimonies are vital to understanding and treating Long Covid, yet patients are frequently disbelieved, and their testimonies are not taken seriously leading to stigma and epistemic injustice, which introduces a lack of trust into the therapeutic relationship.

Patient contribution: The research was undertaken in partnership with our consumer representative(s) and all findings and subsequent recommendations have been coproduced.

Source: Ireson J, Taylor A, Richardson E, Greenfield B, Jones G. Exploring invisibility and epistemic injustice in Long Covid-A citizen science qualitative analysis of patient stories from an online Covid community. Health Expect. 2022 May 12. doi: 10.1111/hex.13518. Epub ahead of print. PMID: 35557480. https://onlinelibrary.wiley.com/doi/10.1111/hex.13518 (Full text)

An Unexpected Journey: The Lived Experiences of Patients with Long-Term Cognitive Sequelae After Recovering from COVID-19

Abstract:

This current study explored the lived experiences of patients with long-term cognitive sequelae after recovering from COVID-19. A qualitative design with in-depth interviews and an analysis inspired by Ricoeur’s interpretation theory was utilised. Contracting COVID-19 and suffering long-term sequelae presented as a life-altering event with significant consequences for one’s social, psychological and vocational being in the world in the months following the infection.

Patients living with long-term cognitive sequelae after COVID-19 were in an unknown life situation characterised by feelings of anxiety, uncertainty and concerns about the future, significantly disrupting their life trajectory and forcing them to change their ways of life. While awaiting studies on treatment, symptom management and recovery after persistent sequelae of COVID-19, clinicians and researchers may find inspiration in experiences of other health conditions with similar phenomenology, such as ME/chronic fatigue syndrome and chronic headaches.

Source: Loft MI, Foged EM, Koreska M. An Unexpected Journey: The Lived Experiences of Patients with Long-Term Cognitive Sequelae After Recovering from COVID-19. Qual Health Res. 2022 May 21:10497323221099467. doi: 10.1177/10497323221099467. Epub ahead of print. PMID: 35603563. https://pubmed.ncbi.nlm.nih.gov/35603563/