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Abstract Background Patients, their family members and caregivers have firsthand experiences of living with or supporting someone living with a disease or medical condition. This knowledge by experience cannot be replaced by the knowledge acquired by clinicians, researchers, or other professionals through study and/or work. The Therapies for Long COVID in non-hospitalised individuals (TLC) research project was funded in the UK by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation to investigate the impact of long COVID on affected individuals. This article focuses on the implementation of PPIE for the TLC project. It provides details on the methodological approach that was adopted, the evaluation and reporting of the PPIE for the project and some previously unreported challenges we faced. Main body A PPIE Lead was appointed to coordinate PPIE for the project and facilitate communication and relationship building with the patient partners. Our overarching approach was collaborative with patient partners actively involved in the various work packages of the project.. This was achieved by recruiting PPIE members from (1) direct contacts, (2) long COVID support groups (3) a local general practitioner (GP) surgery. Although we were unable to hold face-to-face meetings due to the social restrictions during the COVID-19 pandemic, we offered patients the choice of using virtual platforms like Zoom, telephone calls, and emails for communication. We adopted a 4-tiered model for the PPIE group with each tier providing different opportunities for contributing to the project. This model helped the PPIE Lead to effectively co-ordinate PPIE activities for the project as well as provide all patient partners the opportunity to contribute to the project whilst managing their condition. PPIE for the TLC project was co-evaluated with patient partners. Conclusions Despite the challenges we encountered with the pandemic, the TLC project provided a valuable opportunity for patients to shape the design, conduct and dissemination of the research findings. The information provided in this article may be useful to other researchers and patients when planning PPIE for future health research. The implementation of PPIE in healthcare research could help ensure that the outcomes of research are those valued by and relevant to the needs of patients and other end users.

Background COVID-19 disease results in disparate responses between individuals and has led to the emergence of long coronavirus disease (Long-COVID), characterised by persistent and cyclical symptomology. To understand the complexity of Long-COVID, the importance of symptom surveillance and prospective longitudinal studies is evident.Methods A 9-month longitudinal prospective cohort study was conducted within Scotland (n=287), using a mobile app to determine the proportion of recovered individuals and those with persistent symptoms and common symptoms, and associations with gender and age.Results 3.1% of participants experienced symptoms at month 9, meeting the criteria for Long-COVID, as defined by the National Institute for Health and Care Excellence terminology. The random effects model revealed a significant time (month) effect for infection recovery (p

Adaptive pacing (AP) is a self-management technique which seeks to balance energy and rest in individuals with chronic health conditions. Adaptive pacing can help people with myalgic encephalomyelitis/chronic fatigue syndrome learn how to manage their energy expenditure thereby reducing their risk of post-exertional malaise (PEM) and other symptoms. Given some symptom similarity, AP also has rehabilitation potential for people experiencing disability from long COVID. The purpose of this study was to explore patient experiences of an AP intervention (the “PaceMe” app) to determine its value for individuals experiencing long COVID. Twenty-five participants each took part in two narrative interviews (at intervention start point and at 3-6 months). Data were analyzed using narrative thematic analysis. Our analysis identified 4 themes relating to key benefits of the PaceMe app: (1) PEM management, (2) Support, (3) Validation, and (4) Control and Agency. By illuminating the critical facts and centring patient voices, these findings contribute a better understanding of the experiences and needs of those with long COVID and highlight the value of a digital health intervention as a vital component of rehabilitation.

ABSTRACT Introduction Long COVID is a life‐limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We set out to identify current research priorities for people with Long COVID, carers, healthcare professionals and researchers. Methods A systematic literature review and previous Long COVID priority‐setting exercises identified three broad under‐researched areas of Long COVID research within the fields of Public Health and Health Services Research: symptoms; managing day‐to‐day life; and the emotional impact of Long COVID. We disseminated an elicitation survey that asked for research questions in these areas; responses were analysed and summarised into 42 research questions. A survey was then disseminated, asking respondents to prioritise these 42 questions. Workshops were held with people with Long COVID, carers, healthcare professionals and researchers to analyse responses and agree the top 10 priorities. Results The top priorities in order were pharmacological treatment of Long COVID; understanding the pathophysiology; nonpharmacological symptom management; improving public and professional understanding of Long COVID; understanding of the long‐term risks of Long COVID; improving financial and social supports; improving understanding of postviral syndromes; diagnostics; service redesign/pathways; and the well‐being of children with Long COVID. Conclusion Four years into the pandemic, there is an emphasis on the need for research on treatment, understanding and support for people living with Long COVID. Patient and Public Contribution People with Long COVID and carers were involved in the study design, survey design, dissemination, data analysis, interpretation and reviewing and editing the manuscript.

Abstract Background Controversy over treatment for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a barrier to appropriate treatment. Energy management or pacing is a prominent coping strategy for people with ME/CFS. Whilst a definitive definition of pacing is not unanimous within the literature or healthcare providers, it typically comprises regulating activity to avoid post exertional malaise (PEM), the worsening of symptoms after an activity. Until now, characteristics of pacing, and the effects on patients’ symptoms had not been systematically reviewed. This is problematic as the most common approach to pacing, pacing prescription, and the pooled efficacy of pacing was unknown. Collating evidence may help advise those suffering with similar symptoms, including long COVID, as practitioners would be better informed on methodological approaches to adopt, pacing implementation, and expected outcomes. Objectives In this scoping review of the literature, we aggregated type of, and outcomes of, pacing in people with ME/CFS. Eligibility criteria Original investigations concerning pacing were considered in participants with ME/CFS. Sources of evidence Six electronic databases (PubMed, Scholar, ScienceDirect, Scopus, Web of Science and the Cochrane Central Register of Controlled Trials [CENTRAL]) were searched; and websites MEPedia, Action for ME, and ME Action were also searched for grey literature, to fully capture patient surveys not published in academic journals. Methods A scoping review was conducted. Review selection and characterisation was performed by two independent reviewers using pretested forms. Results Authors reviewed 177 titles and abstracts, resulting in 17 included studies: three randomised control trials (RCTs); one uncontrolled trial; one interventional case series; one retrospective observational study; two prospective observational studies; four cross-sectional observational studies; and five cross-sectional analytical studies. Studies included variable designs, durations, and outcome measures. In terms of pacing administration, studies used educational sessions and diaries for activity monitoring. Eleven studies reported benefits of pacing, four studies reported no effect, and two studies reported a detrimental effect in comparison to the control group. Conclusions Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing. Looking to the long COVID pandemic, our results suggest future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination (i.e. longitudinal studies), using the core outcome set for patient reported outcome measures. Until these are completed, the literature base is insufficient to inform treatment practises for people with ME/CFS and long COVID.

Objectives To explore the experience of accessing Long COVID community rehabilitation from the perspectives of people with Long COVID and general practitioners (GPs).Design Qualitative descriptive study employing one-to-one semistructured virtual interviews analysed using the framework method.Setting Four National Health Service Scotland territorial health boards.Participants 11 people with Long COVID (1 male, 10 female; aged 40–65 (mean 53) and 13 GPs (5 male, 8 female).Results Four key themes were identified: (1) The lived experience of Long COVID, describing the negative impact of Long COVID on participants’ health and quality of life; (2) The challenges of an emergent and complex chronic condition, including uncertainties related to diagnosis and management; (3) Systemic challenges for Long COVID service delivery, including lack of clear pathways for access and referral, siloed services, limited resource and a perceived lack of holistic care, and (4) Perceptions and experiences of Long COVID and its management, including rehabilitation. In this theme, a lack of knowledge by GPs and people with Long COVID on the potential role of community rehabilitation for Long COVID was identified. Having prior knowledge of rehabilitation or being a healthcare professional appeared to facilitate access to community rehabilitation. Finally, people with Long COVID who had received rehabilitation had generally found it beneficial.Conclusions There are several patient, GP and service-level barriers to accessing community rehabilitation for Long COVID. There is a need for greater understanding by the public, GPs and other potential referrers of the role of community rehabilitation professionals in the management of Long COVID. There is also a need for community rehabilitation services to be well promoted and accessible to the people with Long COVID for whom they may be appropriate. The findings of this study can be used by those (re)designing community rehabilitation services for people with Long COVID.

Background The persistence of symptoms for ≥12 weeks after a COVID-19 infection is known as Long COVID (LC), a condition with unclear pathophysiology and no proven treatments to date. Living with obesity is a risk factor for LC and has symptoms which may overlap with and aggravate LC. Methods ReDIRECT is a remotely delivered trial assessing whether weight management can reduce LC symptoms. We recruited people with LC and BMI >27kg/m2. The intervention was delivered remotely by dietitians, with online data collection (medical and dietary history, COVID-19 infection and vaccination, body composition, LC history/symptoms, blood pressure, quality of life, sociodemographic data). Participants self-selected the dominant LC symptoms they most wanted to improve from the intervention. Results Participants (n=234) in England (64%) and Scotland (30%) were mainly women (85%) of white ethnicity (90%), with 13% living in the 20% most deprived areas, a mean age of 46 (SD10) years, and median BMI of 35kg/m2 (IQR 32-40). Before starting the study, 30% reported more than one COVID-19 infection (82% confirmed with one or more positive tests). LC Diagnosis was mainly by GPs (71%), other healthcare professionals (9%), or self-diagnosed (21%). The median total number of symptoms was 6 (IQR 4–8). Self-selected dominant LC symptoms included fatigue (54%), breathlessness (16%), pain (12%), anxiety/depression (1%) and "other" (17%). At baseline, 82% were taking medication, 57% reported 1+ other medical conditions. Quality of life was poor; 20% were on long-term sick leave or reduced working hours. Most (92%) reported having gained weight since contracting COVID-19 (median weight change +11.5 kg, range -11.5 to +45.3 kg). Conclusions Symptoms linked to LC and overweight are diverse and complex. Remote trial delivery enabled rapid recruitment across the UK yet certain groups (e.g. men and those from ethnic minority groups) were under-represented. Trial registration ISRCTN registry (ISRCTN12595520, 25/11/2021).

Objectives This study aimed to explore the perceptions and experiences of barriers and facilitators to accessing Long COVID community rehabilitation.Design We used a qualitative descriptive design over two rounds of data collection with three participant groups: (1) people with experience of rehabilitation for Long COVID (PwLC); (2) National Health Service (NHS) staff delivering and/or managing community rehabilitation services (allied health professionals (AHPs)) and (3) NHS staff involved in strategic planning around Long COVID in their health board (Long COVID leads).Setting Four NHS Scotland territorial health boards.Participants 51 interviews: eight Long COVID leads (11 interviews); 15 AHPs (25 interviews) and 15 PwLC (15 interviews).Results Three key themes were identified: (1) accessing care for PwLC, (2) understanding Long COVID and its management and (3) strengths and limitations of existing Long COVID rehabilitation services.Conclusions Organisational delivery of Long COVID community rehabilitation is complex and presents multiple challenges. In addition, access to Long COVID community rehabilitation can be challenging. When accessed, these services are valued by PwLC but require adequate planning, publicity and resource. The findings presented here can be used by those developing and delivering services for people with Long COVID.

Objectives: The Remote Diet Intervention to Reduce Long COVID Symptoms Trial (ReDIRECT) evaluates whether the digitally delivered, evidence-based, cost-effective Counterweight-Plus weight management programme improves symptoms of Long COVID in people with overweight/obesity. Methods: Baseline randomised, non-blinded design with 240 participants allocated in a 1:1 ratio either to continue usual care or to add the remotely delivered Counterweight-Plus weight management programme, which includes a Counterweight dietitian supported delivery of 12 weeks total diet replacement, food reintroduction, and long-term weight loss maintenance. Randomisation is achieved by accessing a web-based randomisation system incorporated into the study web portal developed by a registered Clinical Trials Unit. We are using an innovative approach to outcome personalisation, with each participant selecting their most dominant Long COVID symptom as their primary outcome assessed at six months. Participants in the control arm enter the weight management programme after six months. We are recruiting participants from social media and existing networks (e.g., Long COVID Scotland groups), through newspaper advertisements and from primary care. Main inclusion criteria: people with Long COVID symptoms persisting > three months, aged 18 years or above, body mass index (BMI) above 27kg/m2 (>25kg/m2 for South Asians). The trial includes a process evaluation (involving qualitative interviews with participants and analysis of data on dose, fidelity and reach of the intervention) and economic evaluation (within-trial and long-term cost-utility analyses). Anticipated results: The recruitment for this study started in December 2021 and ended in July 2022. Project results are not yet available and will be shared via peer-reviewed publication once the six-months outcomes have been analysed. Trial registration: Current Controlled Trials ISRCTN12595520