Research Research Digest Research Digest 1/11/19 Welcome to the 34th 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. Editorial: Advances in ME/CFS research and clinical care Authors: Friedman KJ, Bateman K, Bested A, Nahle Z. Link: https://www.frontiersin.org/articles/10.3389/fped.2019.00370/full This editorial provides an overview of a collection of 24 articles on ME/CFS published in the journals Frontiers in Neurology and Frontiers in Pediatrics. The collection, published between September 2018 and July 2019, sought to explore new and rejuvenated areas of ME/CFS research, as well as whether there have been improvements in clinical care. The editorial summarises the advances in ME/CFS research and clinical care over the last few decades, outlining the current lack of diagnostic methods and effective treatment for the illness and highlights the historical misunderstandings which patients have had to endure.However, despite setbacks, advances are being made through the determination and compassion of those working in the field. The collection includes: three papers that evaluated potential clinical biomarkers such as hand-grip strength, two-day cardiopulmonary exercise, and tilt-table testing for diagnosing postural orthostatic tachycardia syndrome (POTS) current research into ME/CFS patient pathology, including microbiome, neuroinflammation and cytokines, cardiovascular symptoms, and the establishment of biobanks to identify additional tissue abnormalities research into how ME/CFS affects adolescents, and what treatment and support benefited them the most. The authors note the lack of articles in the collection that focus on those who are severely unwell, despite making up 25% of the ME/CFS patient population. However, as a result of the interest in the papers in this collection, the editors have been invited to create another collection, called 'ME/CFS – the severely affected', which will focus exclusively on severe patients. Exercise therapy for chronic fatigue syndrome – Cochrane amended review of the effectiveness of graded exercise therapy Authors: Larun L, Brurberg KG, Odgaard‐Jensen J, Price JR. Link: https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome Cochrane is an independent, international network of researchers, clinicians, patients, carers and others interested in health, which publishes systematic reviews of research into health interventions. Cochrane is very well-respected, and its reviews are highly influential. The Cochrane review of exercise therapy for ME/CFS (Larun et al, 2017) has been the subject of a formal complaint about its science and methodology. This complaint led to an update of the review, which Cochrane has now published. The updated review concludes that there is low-moderate certainty about the evidence that exercise therapy may alleviate some symptoms of ME/CFS, and recommends further research. The review acknowledges that: the therapy’s long-term effectiveness is uncertain due to a lack of follow-up in many studies the risk of serious side effects and the effects of exercise therapy on pain, quality of life, and depression is uncertain, due either to lack of evidence or low-quality evidence most studies are based on broader diagnostic criteria than are currently recommended for use, and that 'people diagnosed using other criteria may experience different effects'. Overall, the review concludes that there is limited evidence that exercise therapy may provide short-term benefit to some patients, based on older, and broader diagnostic criteria for ME/CFS. In addition, Cochrane is uncertain, or very uncertain, about the long-term benefits of exercise therapy and its associated risks. Importantly, Cochrane has committed to publish a full update of this review, which will include the establishment of an independent advisory group that 'will involve partners from patient-advocacy groups from different parts of the world'. Work will commence in 2020 and Emerge Australia has requested that they should be a part of this work. Patients with fibromyalgia and chronic fatigue syndrome show increased hsCRP compared to healthy controls Author: Groven N, Fors EA, Reitan SK. Link: https://www.sciencedirect.com/science/article/pii/S0889159119302089 ME/CFS and fibromyalgia (FM) both have clinical aspects that resemble inflammatory disorders and, in both conditions, it is thought that the immune system may play a role. C-reactive protein (CRP) is a blood marker that measures inflammation. This study used a high-sensitivity CRP (hsCRP) test, which is more sensitive than standard CRP tests, to examine CRP levels in both conditions as compared to healthy controls.Results showed hsCRP levels were significantly higher for both the ME/CFS and FM groups, compared to healthy controls and there were no differences between the two patient groups.Overall, the higher hsCRP levels suggest inflammation is present in ME/CFS and FM patients, which may contribute to symptoms, as inflammation is a well-known cause for fatigue and pain. The researchers note that inflammation could be a target for treatment, as well as a marker to monitor the effectiveness of treatment. Breaking through the stigma of chronic fatigue syndrome Author: Handley K. Link: https://www.abc.net.au/radio/newcastle/programs/mornings/chronic-fatigue/11645618 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.