Research Research Digest Media and Research Digest (005) Friday 22nd June 2018 Welcome to the Fifth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Quantitative and qualitative study of Post-Exertion Malaise amongst ME/CFS patients Link: http://www.workwellfoundation.org/wp-content/uploads/2018/05/PEM-Poster-Lariel-6-002.pdf A study carried out by the University of Health and Exercise in California has quantified Post-Exertion Malaise (PEM). The study compared patients with ME/CFS patients to healthy controls. 49 ME/CFS patients and 10 sedentary controls were subjected to a two-day maximal cycle exercise test. Results were gathered in the form of self-reported questionnaires to gauge conditions at various points after the tests. It found that ME/CFS patients reported significantly higher symptoms in all categories, especially in decreased function, cognitive dysfunction, cardiopulmonary issues, and light-headedness. As for recovery, 49% of ME/CFS patients recovered after 4.5 days and 51% didn’t recover after 7 days. The control group recovered after only 1 day. The study concluded by suggesting that understanding PEM may provide clues to the underlying factors causing ME/CFS. 2 – Today Tonight Segment on ME/CFS Link: https://www.youtube.com/watch?v=o0Tjke45R2A ‘Today Tonight’ – a current affairs programme which airs in Adelaide and Perth recently broadcast a short segment on ME/CFS. The piece began with the story of Josh Roberts, a once active young “Mini Action Man” who suffered the flu which developed into ME/CFS. Speaking with both Josh and his mother the segment portrays his struggles with the illness and the dramatic impact ME/CFS has on his life. This was followed by an interview with Professor Don Staines, co-director of the NCNED research facility (National Centre for Neuroimmunology and Emerging Diseases) at Griffith University who has been working on the illness for the last 10 years. They discussed that they have linked ME/CFS to a faulty receptor (transient receptor potential melastatin 3 or TRPM3) on immune cells. This receptor is responsible for bringing calcium into the cell which helps to destroy infections. As the TRPM3 receptor is found in virtually all cells, it may explain the severe immune response and varied symptoms of ME/CFS. The team is currently developing a blood test and trialling potential drugs for ME/CFS treatments. 3 – What Causes Chronic Fatigue Syndrome Review Link: https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 This article by Melbourne based researcher Mark Guthridge gives a current summary of ME/CFS. It is estimated that around 200,000 people in Australia have ME/CFS, with people suffering from an extensive range of symptoms. The condition remains widely misunderstood both here in Australia and abroad, with a recent UK study finding that more than 85% of patients go for up to two years without a diagnosis. Data shows that women are up to 4 times more likely to develop ME/CFS than men, with this figure doubling if a first-degree relative has suffered from ME/CFS. Whilst the role of genetics is currently unclear it is known that ME/CFS patients have immune disruptions, abnormal inflammatory responses, and metabolic defects; however the underlying cause is still unknown. Dietary changes and nutritional supplements have seemed to have some limited benefits, with “supplements involved in generating metabolic energy seem[ing] to improve some ME/CFS symptoms”. It is clear that further research and funding are needed, and Australian scientists are currently taking a leading role in developing diagnostic markers. 4 – Funding to replicate and validate Dr Mark Davis’ remarkable findings Link: https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/ A team from Edinburgh University, led by Professor Chris Ponting, have received £90,000 in funding to conduct additional research expanding on Dr Mark Davis’ T-cell research on ME/CFS. In August 2017, Dr Mark Davis from the Open Medicine Foundation (OMF) found strong evidence of T-cell immune activation in ME/CFS patients. T-cells are immune cells which target a specific antigen and undergo clonal replication when the threat is identified. These cloned T-cells then fight off the threat to defend the body. Additionally, T-cell replication in ME/CFS patients was compared to Lyme disease and Multiple Sclerosis patients which showed similar results. This is in contrast to healthy controls who do not show such underlying pathology. The next step in the research is to identify the specific antigen that is triggering this response. While these results are not yet published, the research seems promising and this additional funding for Edinburgh University should shed further light on these findings.