Research Research Digest Research Digest 16/10/20 Welcome to the 57th 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. NHMRC announces $3m ME/CFS Targeted Call for Research grant recipients Author: National Health and Medical Research Council Link: https://www.nhmrc.gov.au/file/15682/download?token=xxUI-LiS Last week, the National Health and Medical Research Council (NHMRC) announced the successful applicants who will receive funding from the $3m ME/CFS Targeted Call for Research (TCR). The TCR was a recommendation of the NHMRC’s ME/CFS Advisory Committee’s 2019 report. Congratulations to the three successful grant applicants: Professor Sonya Marshall-Gradisnik - Griffith UniversityGrant: $1.46mProject title: Ion channel dysfunction in the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: diagnostic biomarkers, therapeutic targets and treatments Professor Ken Walder - Deakin UniversityGrant: $1.08mProject title: Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS Professor Paul Gooley - University of MelbourneGrant: $784,000Project title: Exploring the role of nitrogen metabolism, energy metabolism and mitochondrial function in the pathophysiological mechanisms of paediatric ME/CFS Emerge Australia is thrilled that this grant money all went to high quality biomedical research which has the capacity to help further our understanding of ME/CFS and may help to find effective treatments for people struggling with this disabling disease. Emerge Australia has relationships with all these groups and looks forward to supporting these research projects moving forward. Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36 Authors: van Campen CLMC, Rowe PC, Visser FCLink: https://www.mdpi.com/2227-9032/8/3/273 Rating the severity of ME/CFS patients’ symptoms and disease is important for clinicians and researchers. Patient self-reporting of symptoms can be influenced by age, gender, education level, disease duration and co-morbidities, and therefore lacks objective measures of disease severity. Disease severity is rarely reported in ME/CFS studies. The International Consensus Criteria (ICC) proposed a severity grading, from mild to very severe, in part to help stratify patient severity in ME/CFS research. The purpose of this study was to validate the ICC severity grading in ME/CFS using both a standardised questionnaire (physical activity subscale of the SF-36 questionnaire) and two objective measures of activity: cardiopulmonary exercise testing and physical activity tracking. The study sample included 289 ME/CFS patients who attended a cardiology clinic in the Netherlands, which specialises in treating ME/CFS, between October 2012 and January 2018. All patients met both the Fukuda criteria and ICC. Patients were included only if they also met the following three additional criteria: they had completed the SF 36 questionnaire, they had worn a Sensewear armband activity tracker for five days, and they had undergone a cardiopulmonary exercise test, all within a three-month period. The patients in the sample were categorised as mild (121), moderate (98) and severe (70), according to the ICC severity grading system. The results on the SF-36 and activity measures were compared across the three groups, to measure the validity of the severity ratings. There were significant differences between mild, moderate and severe patients on the physical function subscale of the SF-36 questionnaire, and objective activity measures such as the number of steps per day and measures of percent oxygen consumption at ventilatory threshold and at peak exercise. As expected, these all decreased significantly with increasing severity. The authors conclude that the results confirm the validity of the ICC severity grading. The authors note that there is some variability within each severity group, and recommend that grading based on self-report be strengthened by the use of these supplementary standardised measures. Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine Author: Bileviciute-Ljungar I, Schult ML, Borg K, Ekholm JLink: https://pubmed.ncbi.nlm.nih.gov/32488281/ The International Classification of Functioning, Disability and Health (ICF) is a set of health and related domains which describe functioning and disability. The ICF is the framework used by the World Health Organization (WHO) to categorise disability at both the individual and population levels. ICF Core Sets, lists of essential categories used to assess particular health conditions, have been developed for several conditions such as osteoporosis, heart disease and stroke. This study aimed to develop a preliminary ICF Core Set for ME/CFS using the ICF categories of Body Functions, Activity and Participation, and Environmental Factors, and to evaluate the Core Set in a clinical setting. A total of 100 ME/CFS patients (diagnosed according to both the Fukuda criteria and Canadian Consensus Criteria) who had been referred to a rehabilitation program in Sweden participated in the study. The authors used literature reviews to develop initial ICF Core Set. A range of questionnaires and other tests and clinical assessment by a multi-disciplinary team were used to assess patients’ function. For the Body Functions category, 82-100% of patients had impairments in energy, fatigue, physical endurance, fatigability, sleep and pain. At least half of the patients had impairments in higher cognitive functions, sound and light hypersensitivity, general hyper-reactivity and, impaired thermoregulatory functions. For the Activity and Participation category, more than 90% experienced frequent limitations in capacity for housework, assisting others and acquisition of goods and services. In addition, 87% had restricted remunerative employment, 83% had difficulty handling stressful situations, and around 80% experienced impairments in recreation, leisure and informal socialising. The authors acknowledge that usually ICF Core Sets are developed through a formal consensus process, which was not the case with this study, and is hence a limitation. They also acknowledge that the study only included patients who were well enough to participate in a rehabilitation program, thus excluding the more severely unwell patients. The authors recommend that future research is undertaken to validate the Core Set, and that home monitoring of patients’ function be used to improve and better operationalise it. Activity measurement in pediatric chronic fatigue syndrome Authors: Loiacono B, Sunnquist M, Nicholson L, Jason LALink: https://pubmed.ncbi.nlm.nih.gov/32806955/ Many ME/CFS diagnostic criteria require that patients have a substantial reduction in activity level. Despite this, most studies which have examined activity levels in people with ME/CFS have used only self-report measures rather than objective measures like accelerometers, and have focussed on adults. There are few studies which have examined activity levels in paediatric ME/CFS patients. The authors acknowledge that self-report of activity levels in children are further complicated by problems of recall and language. This study analysed and compared the objective and self-report activity data collected from children and adolescents in order to determine the reliability of self-reported data in young people with ME/CFS. The authors recruited young people aged 5-17 from the Chicago area, and the study sample included 35 young people with ME/CFS (diagnosed according to the Fukuda criteria) and 15 age and gender-matched healthy controls. Activity levels were quantified with an accelerometer (ActiGraph) worn around the waist for 24 hours, while self-reported activity levels were determined using the Modifiable Activity Questionnaire (MAQ) that asked participants to report how many minutes per day, days per week, and months per year they engage in 39 specified activities. Results indicated healthy children were more active than children with ME/CFS. Further, the authors also claim that the results show that children with ME/CFS had delayed onset of daytime activity and somewhat more night time activity than controls, potentially indicative of sleep disruption. There was a significant correlation between ActiGraph data and self-reported activity levels, as measured by the MAQ, suggesting child participants were able to provide an accurate account of their activity levels. However, there was no significant relationship between fatigue scores and ActiGraph data, which the authors suggest demonstrates that young people with ME/CFS may engage in activity regardless of fatigue, and contradicts assertions that young people with ME/CFS experience fatigue due to deconditioning from lack of activity. The authors suggest that the differences between ME/CFS and healthy children in both overall activity levels and diurnal/nocturnal activity levels should be considered in identifying appropriate supports and accommodations for children with ME/CFS.