Research Research Digest Research Digest 4/10/19 Welcome to the 33rd 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. Myalgic encephalomyelitis/chronic fatigue syndrome: From pathophysiological insights to novel therapeutic opportunities Authors: Morris G, Puri BK, Walker AJ, Maes M, Carvalho AF, Walder K, Berk M. Link: https://www.sciencedirect.com/science/article/abs/pii/S104366181 This article summarises existing literature on ME/CFS and provides an overview of the potential therapeutic opportunities for its treatment. The authors present a summary of identified physiological abnormalities that have been found in ME/CFS patients, including a pro-inflammatory state, increased oxidative and nitrosative stress, disruption of gut mucosal barriers, and mitochondrial dysfunction. The authors note that there have been attempts to treat ME/CFS by focusing on reducing inflammation or oxidative stress, or improving mitochondrial function, and they provide an overview of the research on the most common of these: coenzyme Q10, melatonin, curcumin, molecular hydrogen and N-acetylcysteine. Finally, the article also mentions that both cognitive behavioural therapy and graded exercise therapy may result in modest temporary improvements when using broad diagnostic criteria (which do not require post-exertional malaise), but that they don’t result in any objective increase in fitness or capacity for exercise. Additionally, numerous patient surveys suggest GET poses a risk of harm to many patients. Work rehabilitation and medical retirement for myalgic encephalomyelitis/chronic fatigue syndrome patients. A review and appraisal of diagnostic strategies Authors: Vink M, Vink-Niese F. Link: https://www.mdpi.com/2075-4418/9/4/124 ME/CFS leads to severe functional impairment and work disability in a considerable number of patients. This paper explores ME/CFS from a work rehabilitation point of view, and outlines the factors that have a negative impact on recovery and return to work, including: insufficient rest at the onset of the illness older age illness duration having a psychiatric disorder alongside ME/CFS illness severity (being homebound, dependent on others). Emerge Australia’s 2018 Health and Welfare Survey was cited in this paper – 74% of individuals surveyed had to cease working due to their condition, and this was usually around one year after symptom onset. Occupational physicians are advised to understand post-exertional malaise and how this can affect the ability to work, including absenteeism and suitable return to work planning. Workload and hours of work are recommended to be 'dramatically reduced' in order to create a sustainable plan. Pushing through symptoms is counterproductive and strongly advised against. Small modifications in workplaces can make a big difference to the individual’s symptoms, including creating a quiet area to rest or allocating a parking space near the entrance of the building. The fluctuating nature of the illness is also noted as a challenging aspect of returning to work, and should, therefore, be accounted for. The authors also analysed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) studies and found that these treatments do not restore the ability to work, and patients should not be forced to undergo them. Getting a diagnosis continues to be a challenge for patients, with an estimated 90% of patients affected remaining undiagnosed. Early detection is of utmost importance, as well as enforced rest at the time of symptom onset. This paper is from the Emerge Australia sponsored special ME/CFS issue of Diagnostics. Dr Ron Davis gives an update on ME/CFS research Author: Davis R. Link: www.youtube.com/watch?v=rtVtH-cwhBY In this short (8-minute) video, Dr Ron Davis from Stanford University, and Director of the Open Medicine Foundation's Scientific Advisory Board, gives a brief update of his team’s ME/CFS research. Dr Davis relayed that his team has discovered that every ME/CFS patient they’ve studied has a mutation in a gene called IDO2. Many biochemists and geneticists believe the gene mutation is not a necessary factor to developing ME/CFS, because many healthy people also carry this mutation but haven’t developed ME/CFS. However, Dr Davis believes the fact that this mutation is present in every ME/CFS patient they’ve studied means it is necessary for someone to develop the condition. Dr Davis’s team is now testing an hypothesis involving IDO2, the Metabolic Trap Hypothesis, to see if it could be the mechanism underlying ME/CFS. Dr Davis refutes this theory as it is a commonality between all ME/CFS patients. With an emphasis on international cooperation and data sharing, Dr Davis remains optimistic that although ME/CFS is a 'complicated disease and [scientific progress] will take some major effort', the research will result in better treatments and hopefully, a cure. Medical Research Future Fund win for Emerge Australia: Epidemiology and health economic impacts of ME/CFS Link: https://emerge.org.au/medical-research-future-fund-win-for-emerge-australia-epidemiology-and-health-economic-impacts-of-me-cfs/ The impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the focus of new research which includes Emerge Australia CEO Dr Heidi Nicholl as a co-Chief Investigator to ensure that patient voices are heard. The project is led by the Menzies Institute for Medical Research and also includes Deakin University. Funded by the Medical Research Future Fund (MRFF) Targeted Health System and Community Organisation Research Grant Opportunity, the ANCHOR Project will look at the prevalence and economic costs of ME/CFS in Australia and its far-reaching impacts on patients, carers, the broader community and the health system. The Anchor group comprises researchers from across the University of Tasmania, Deakin University and Emerge Australia – the national consumer support and advocacy group. Menzies Health Economics Researcher and project lead Dr Barbara de Graaff said the effects of ME/CFS were greatly underestimated. The project is supported by $155,000 in funding from the Medical Research Future Fund (MRFF) and is one of four projects recently announced in the Targeted Health System and Community Organisation Research Grant Opportunity round.