Journal of IiMER June 2024 What we have been doing Our research strategy is oriented to achieving the best and most rapid outcome with the resources we have – which is only possible via a coordinated, collaborative structure of biomedical research, using the capacity of Europe. Since the charity was formed it has concentrated on prioritising biomedical research as the quickest way to improve and effect better education and to galvanise advocacy. We concentrated, as best as we could, on setting up some of the key building blocks that would create sustainable and permanent change in how ME is researched and treated, by creating solid foundations for a research programme on ME research based on solving scientific questions to find treatments based on research evidence raising standards on all levels of patient care facilitating European and international collaboration changing attitudes toward ME from within institutes and organisations via funded researchers and medical students The Only Clinical Trial for ME in UK The charity is fully funding the only clinical trial for ME in the UK. This is being carried out at the centre in Norwich Research Park at the Quadram Institute. The Aim of the RESTORE-ME study is to undertake a clinical feasibility study of FMT in ME/CFS and determine if a full clinical trial is justified. This will be achieved by providing evidence for efficacy in this patient group, a mechanistic understanding of FMT in ME/CFS, the acceptability of the treatment for patients, the measurement properties of outcome measures, and to provide bounds for efficacy. A significant proportion of ME/CFS patients date the onset of their symptoms to a GI illness. FMT may be helpful in these patients. A study undertaken in a single centre in Australia reported significant clinical improvement in 70% of ME/CFS patients administered an FMT (Borody et al., 2012). Since gut dysbiosis might be a contributing factor in ME/CFS, particularly in those with IBS, replacing the gut microbiota could be an effective treatment. This is the hypothesis behind the RESTORE-ME clinical trial – a phase 2b, double blind and placebo controlled – which focuses on establishing safety and efficacy. A pilot study, called Light ME Up, is being supported by Invest in ME Research to assess the acceptability, safety and potential benefit of red light exposure in ME patients. It is a remote feasibility study that patients can undertake from their home. People with ME are reported to have reduced function of mitochondria, the powerhouses in our bodies’ cells that generate energy. Mitochondria can absorb red light and use this to boost energy production, so there is interest in using red light therapy to treat ME. This has been used to manage the symptoms of acne, muscle and joint pain, arthritis, blood circulation issues and hair loss; this will be the first study to assess the use of red light therapy on ME. Symptoms will be monitored for a couple of weeks before and after this period, to see whether the red light therapy provides any benefits. The Light ME Up study will trial objective Invest in ME Research Page 5 of 32
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