Research Research Digest Research Digest 24/09/21 Welcome to the 77th Emerge Australia Research Digest, where you will find summaries of some of the latest research and information about ME/CFS, with links to the complete articles. You can also join our community and choose to have the Digest delivered straight to your inbox every fortnight on a Friday afternoon by signing up to our mailing list here. We appreciate the support of everyone who reads the Digest – we encourage regular subscribers to support us with a monthly suggested donation of $2. You can sign up for monthly giving here. _______________________________________________________________________________________________________ Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient‑Centred N‑of‑1 Observational Designs: A Protocol for a Feasibility and Acceptability Study Authors: McDonald S, Tan SX, Banu S, vanDriel M, McGree JM, Mitchell G, Nikles J (Uni. of Qld, Australia) Publication: The Patient – Patient-Centred Outcomes Research Link: https://link.springer.com/article/10.1007/s40271-021-00540-0 The heterogenous nature of ME/CFS and the wide range of symptoms that patients experience, including between individuals and within an individual over time, makes effective management of the conditions challenging. Hence, findings from randomised controlled trials (RCTs), which focus on average results of interventions, may not be applicable for every individual living with ME/CFS, and these authors argue that RCTs may not be the best approach to studying treatments for ME/CFS. Research using a quantitative N-of-1 observational design involves taking repeated outcome measurements from an individual over a period of time, generating individual-specific conclusions on symptom patterns and triggers. The authors present a proposal for exploring the feasibility and acceptability of using novel patient-centred N-of-1 observational designs, to explore ME/CFS symptom fluctuations and triggers at the individual level. The authors propose recruiting 20 participants with a diagnosis of ME/CFS (Canadian Consensus Criteria). The proposed measurements are to be completed via a wrist-worn electronic diary, three times per day for 6-12 weeks recording fatigue, stress, mood and cognitive demand. Physical activity will be recorded via an integrated accelerometer. Feasibility and acceptability of this design will be assessed by the percentage of diary entries completed, recruitment and retention rates, feasibility of collecting and analysing the data and participant feedback. Individual patient data will be compared to validated data on healthy individuals and will also be analysed to identify associations between triggers and symptoms. Participants will be provided with a personalised feedback report with a descriptive summary of their data and any statistically significant associations between measured symptoms and triggers. It is hoped that this study will both identify inter and intra individual variability symptomatology to improve the understanding and management of ME/CFS, as well as evaluate the feasibility and acceptability of using N-of-1 observational studies to assess symptom exacerbations and triggers, at the individual level. _______________________________________________________________________________________________________ Causal attributions and perceived stigma for myalgic encephalomyelitis/chronic fatigue syndrome Authors: Froehlich L, Hattesohl DB, Cotler J, Jason LA, ... Behrends U (Tech. Uni. of Munich, Germany) Publication: Journal of Health Psychology Link: https://journals.sagepub.com/doi/full/10.1177/13591053211027631 As ME/CFS is poorly understood, people with ME/CFS experience stigma and delegitimisation of their lived experience, resulting in loss of status, discrimination, stereotyping, and being perceived as inferior to others. This study drew on attribution theory to explore the relationship between higher perceived stigma and lower functional status found in ME/CFS. According to attribution theory, stigmatised conditions are perceived differently depending on whether the condition is thought to be controllable (ie: the outcome is within the individual’s control) and stable (low chance of recovery), with uncontrollable and stable conditions eliciting more sympathy than those perceived to be controllable and unstable. Four hundred and ninety-nine participants with self-reported ME/CFS and who met Canadian Consensus Criteria, completed questionnaires measuring their own and their perception of others’ attributions of the controllability and instability of ME/CFS, as well as psychological and physiological causes of the condition. Participants were also asked about perceived stigma, functional status, and satisfaction with social roles and activities. Participants rated others’ perception of ME/CFS as uncontrollable and unstable, and more likely to have psychological than physical causes. However, participants’ own attributions were towards uncontrollable, stable and more physical causes. Higher perceived others’ controllability and instability attributions were related to lower functional status and satisfaction with roles and increased perceived stigma. The authors call for further research in those with diagnosed ME/CFS, longitudinal studies, and the impact of educational programs about ME/CFS on perceived attributions of the condition. _______________________________________________________________________________________________________ Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management Authors: Bateman L, Bested AC, Bonilla HF… Yellman BP (Bateman Horne Center of Excellence, USA) Publication: Mayo Clinic Proceedings Link: https://www.sciencedirect.com/science/article/pii/S0025619621005139 Clinical guidance for ME/CFS has been scarce and at times harmful. As a result, many patients with the condition are either undiagnosed or misdiagnosed, and many receive inappropriate treatment. The lack of adequate clinical guidance has become more problematic with the advent of long-COVID. This article presents the consensus clinical guidance recommendations of a group of 21 expert ME/CFS clinicians from the US. The article provided an overview of the epidemiology, prognosis and pathophysiology of ME/CFS. The authors outlined the clinical diagnostic criteria (Institute of Medicine/National Academy of Medicine), and provided an assessment guide for clinicians, including testing recommendations. The importance of both ruling out alternative diagnoses and identifying comorbid conditions was emphasised. The authors acknowledged that while in the past graded exercise therapy (GET) and cognitive behaviour therapy (CBT) have recommended, these treatments are based on a model of ME/CFS which does not match the biological evidence and GET and CBT studies have been criticised for their flawed methodology. As a result, these treatments are no longer recommended. The authors recommend that management of ME/CFS focus on validating the patient’s experience, assessing their needs and provide support, teaching pacing to help patients limit their energy expenditure, and treating symptoms where possible. The authors noted that, while there are currently no evidence-based treatments for ME/CFS, there are many steps which clinicians can take to improve the quality of life of their patients with ME/CFS. The authors suggested that patients with lingering symptoms following COVID-19 but who do not fully meet the diagnostic criteria for ME/CFS may also benefit from these recommendations. _______________________________________________________________________________________________________ What is long covid and what are the symptoms? Publication: ABC News Link: https://www.abc.net.au/news/2021-08-29/what-is-long-covid-and-what-are-the-symptoms/13518830 Well-respected ME/CFS doctor, Dr Richard Schloeffel, who is now studying long-COVID at Macquarie University, was interviewed by ABC News recently about the risks of developing long-COVID. “Long-COVID is going to be a far greater problem to the world, and probably Australia, than any other problem we’ve faced with this coronavirus. Long-COVID is not dissimilar to post-viral syndromes, chronic fatigue syndrome, and even what’s known as Lyme disease in America.” Interview runs for 8 minutes.