Research Research Digest Media and Research Digest (004) Friday 8th June 2018 Welcome to the Fourth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – ME/CFS is Chronically Underfunded in the UK Link: https://www.thecanary.co/discovery/analysis-discovery/2018/05/25/the-truth-about-nhs-research-funding-that-should-shame-the-government/ The extent to which ME/CFS is underfunded when compared with other health conditions has been revealed during Parliamentary Question time in the UK. It is estimated that, since 2007, only £10 million pounds was allocated to ME/CFS research, a condition which affects an estimated 250,000 people nationwide. By comparison, Multiple Sclerosis (MS) which affects 100,000 people in the UK, received £74 million during the same time period. Further highlighting the disparity in funding, in the previous financial year (2016-2017), only £130,958 was spent on ME/CFS. This represents just 50p per patient. This emphasises that there is a dire need to drastically increase funding for ME/CFS to match current needs and circumstances. 2 – Love Means Never Having to Say… Anything Link: https://www.nytimes.com/2018/05/25/style/modern-love-means-never-having-to-say-anything.html This heart-warming article tells the story of a couple in the US who both have ME/CFS and how, despite their debilitating health issues, they still find ways to express their love for each other. Writer Jamison Hill developed ME/CFS when he was 21. Now 29, he is in a committed relationship Shannon who suffers from the same illness. Despite Shannon living over 2000 miles away, she has risked her health to visit him. Jamison is so adversely affected that he is unable to speak. During visits, the couple communicate via text message as both lie bedbound. They share a strong empathic relationship which transcends many of the physical obstacles placed on them due to their illness. 3 – Summary of Current Status of ME/CFS Link: https://theconversation.com/what-causes-chronic-fatigue-what-we-know-dont-know-and-suspect-94395 This article by Melbourne based researcher Mark Guthridge provides an excellent, 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 four times more likely to develop ME/CFS than men, and the chance of suffering doubles if a first-degree relative has ME/CFS. However, the role of genetics is currently unknown. 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 – Evidence of Hypocortisolism in ME/CFS Patients Link: https://www.sciencedirect.com/science/article/pii/S0018506X1730569X Researchers in the Netherlands conducted a study on short term and long term cortisol levels for ME/CFS patients as compared to healthy controls, and found that they have altered dynamics of Hypothalamic-Pituitary-Adrenal (HPA) axis functions. Results indicate that patients had reduced cortisol awakening response (a rise in cortisol level in the morning) but that overall cortisol output throughout the day is similar to that of healthy individuals. In addition to this cortisol levels – as measured in hair amongst a subset of ME/CFS patients – is lower than that found in healthy controls. 5 – The ME Show Link: http://www.meassociation.org.uk/podcast/ The ME show is a weekly podcast hosted by Gary Burgess and sponsored by the ME Association (UK) which discusses anything to do with MECFS. It features “interviews with patients, carers and advocates as well as clinicians, scientists and notable guests.” Please visit the link above to access the podcasts.