Research Digest 12/07/19 Welcome to the 27th 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 at the bottom of this page. 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. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service (NHS) specialist centres in England Authors: McPhee G, Baldwin A, Kindlon T, Hughes B. Link: https://journals.sagepub.com/doi/abs/10.1177/1359105319854532?journalCode=hpqa& Researchers from England surveyed specialised ME/CFS clinics across the country to gauge how they detected and monitored harm following graded exercise therapy (GET), as well as to monitor how patients were warned of potential harm. The researchers sent 57 clinics standardised information requests, under the United Kingdom’s Freedom of Information Act. Thirty-eight clinics responded and, overall, clinics had inconsistent approaches to treatment-related harm, and provided little or no information on the risk of harm to both staff and patients. Furthermore, 'no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment'. The findings illustrate the need for standardised protocols for anticipating, recording and remedying harms, and these protocols should allow treatment to stop when harm is identified. Innovation in assistive technology: Voice of the user Authors: Buchanan R, Layton N. Link: https://www.mdpi.com/2075-4698/9/2/48 An open letter, co-authored by an Australian patient advocate and assistive technology (AT) user Ricky Buchanan, suggests that assistive technology can be improved by focusing on developing AT systems, rather than AT products. This involves sound implementation and evaluation of existing ATs. Ensuring sound implementation could include integrating different components of a user’s ATs so that they can be controlled via a single user interface. Evaluation of existing ATs should include a fresh consideration of the user’s role in creating and using AT. Users should be involved in the creation of AT, and more flexible and 'hackable' ATs should be made to allow for user adaptation of the technology to their specific needs. Overall, shifts in the possibilities of AT, the way it is being used, and, most importantly, consideration of the abilities of users, all require a change in the way AT is created and implemented. Unemployment and work disability in individuals with chronic fatigue syndrome/myalgic encephalomyelitis: A community-based cross-sectional study from Spain Authors: Castro-Marrero J, Faro M, Cleofé Zaragozá M, Aliste L, Fernández de Sevilla T, Alegre J. Link: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7225-z This study looks at the relationship between unemployment and work disability with ME/CFS. ‘Work disability’ is the inability to engage in substantial gainful activity due to physical or mental impairments, as defined by Wunderlich, Rice & Amado (2002). In this study, the authors relate work disability as being unemployed specifically due to having ME/CFS, as opposed to unemployment for other reasons. The study recruited 1086 ME/CFS patients who lived in Spain aged between 18 and 65 years. Results showed that 41.4% were employed and 58.6% were unemployed. Pain, autonomic dysfunction, neurological symptoms, higher scores of fatigue, psychopathology, depression and sleep dysfunction were all associated with a higher risk of work disability due to illness. Patients over 50 at the time of diagnosis, and those with a later onset of fatigue and pain, have a higher risk of being unemployed. The presence of fibromyalgia also increased a person’s likelihood of unemployment. Wunderlich G, Rice D, Amado N, 2002 The Dynamics of Disability: Measuring and monitoring disability for social security programs, Washington, DC, The National Academies Press: https://doi.org/10.17226/10411. 9 News South Australia – New test could revolutionise diagnosis of chronic fatigue Author: Stanley J. Link: https://www.9news.com.au/national/south-australia-news-chronic-fatigue-study/d25d98fb-5c96-472a-ad2e-fccf813c3e0a The article by 9 News South Australia outlines Aimee De Lurant’s battle with ME/CFS and how it has significantly impacted her life. It then focuses on the work of Dr Mike Musker from South Australian Health and Medical Research Institute (SAHMRI), whose current study is focusing on inflammatory markers throughout the day in ME/CFS patients, as compared to healthy controls. A second study is also looking at bloods taken from the same patient on good and bad days. Dr Musker’s research has the potential to lead to biomarkers. Dr Musker stated that patients are often too unwell to participate in studies and that 'I’m willing to go to their home and take their blood when they’re feeling really unwell'. The article ends with Ms De Lurant stating how important these research areas are as they provide hope for all ME/CFS patients. For more information on the trial, visit www.sahmri.org.