Research Research Digest Media and Research Digest (015) Friday 11th January 2019 Welcome to the Fifteenth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Ten ME/CFS organisations ask US Congress to create legislation for ME/CFS Author: #MEAction Link: https://www.meaction.net/2018/11/09/ten-organizations-ask-congress-to-create-legislation-for-me-cfs/ #MEAction, along with a number of other ME/CFS organisations, submitted a letter to ME/CFS advocates in the House of Representatives in the US to request that Congress pass legislation to protect the interests of people with ME/CFS. This comes after the abrupt end of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) on 5th September 2018. In the letter the ME/CFS organisations urge the government to create a governing body to fill the void created by the loss of the CFSAC and to “address critical issues preventing proper diagnosis, treatment, and care for the approximately 1 to 2.5 million Americans afflicted with this horrific disease.” 2 – Chronic Fatigue Syndrome – the ‘missing people’ enigma Author: Dow, A. Link: https://www.smh.com.au/national/chronic-fatigue-syndrome-the-missing-people-enigma-20180929-p506u6.html This article, from the end of Sept 2018, describes the social impact of ME/CFS. Emerge member and ME/CFS patient Krista Callinan describes how she was forced to give up many of her former activities due to the effects of ME/CFS. Dr Heidi Nicholl, CEO of Emerge Australia, discusses the severity of ME/CFS and notes that about a quarter of patients are so unwell they “disappear from public view”. Dr Nicholl highlights that ME/CFS is not a psychosocial disease, and that overall there is evidence that graded exercise therapy is not an effective treatment for the illness. 3 – ‘I’m 33 and have been living in aged care for five years’ Author: Wooding, K. Link 1: https://www.theage.com.au/lifestyle/health-and-wellness/i-m-33-and-have-been-living-in-aged-care-for-five-years-20181016-p509ul.html Link 2: https://www.youtube.com/watch?v=yKoheNZlqXg This first-person piece, published in October 2018 by Ketra Wooding, a 33 year old ME/CFS sufferer who currently lives in an aged care facility in a dementia ward, gives a detailed insight into her experiences living with the condition. Before the illness struck, Ketra worked on luxury yachts and travelled the world. In the interview Ketra describes how, during her initial diagnosis, she was recommended to try Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Unfortunately, like many others, the treatment only made her worse. She was also recommended to carry on with her life and to ignore her symptoms. Her decline halted once the 2011 International Consensus Primer for Medical Practitioners for Myalgic Encephalomyelitis was published. “Three of Australia’s ME/CFS experts helped develop these guidelines and by following them, pacing, using energy conservation techniques and being mindful of my heart rate limits and anaerobic threshold, I stopped deteriorating and started to stabilise.” The piece concludes with Ketra hoping that the NDIS will one day enable her to live independently in a less demanding environment. 4 – Dr W. Ian Lipkin’s letter to the Fourth Annual Conference on Psychosomatics at Columbia University Author: Lipkin, W. I. Link: http://www.virology.ws/2018/10/18/me-cfs-is-not-a-psychosomatic-illness/?fbclid=IwAR3lOF7vcD-VgxR6lRSzjoR8XvUoBxzoN9lo7f2OvXrtT5R54nmmpQo42SQ This letter, written by Dr W. Ian Lipkin, Director of the Center for Infection and Immunity and the Centre for Solutions for ME/CFS at Columbia University (also John Snow Professor of Epidemiology; Professor of Neurology & Pathology, College of Physicians & Surgeons), outlines that current research in numerous fields gives evidence that patients with ME/CFS have biological abnormalities, and are not suffering from a psychosomatic illness. He ends the letter by reinforcing his goal to find immunological and metabolic causes for ME/CFS. 5 – A brightening future: the state of ME/CFS research Author: McGrath, S. Link: https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research This article presents a summary of current research and future hopes for ME/CFS. In the last few years, ME/CFS has gained more prominence in the media, and research into the disease has yielded some promising early results. A key focus for researchers has been evaluating the energy production of ME/CFS patients. Researchers have found that, in comparison to healthy controls, patients have a significant drop off in performance of tasks on the second day after initial exertion. Cellular research has also identified problems with energy metabolism. In other areas, researchers in Japan in 2014 found activation of the brain’s main immune cells, the microglia, which could explain the rest of the symptoms in the body. In 2017, Dr Mark Davis at Stanford University found “substantial levels of T-cell clonal expansion in patients, similar to that seen in multiple sclerosis and infections.” There have been significant increases in funding for research with the National Institute of Health planning to invest $35 million into three new collaborations and the Open Medicine Foundation raising over $14 million to be invested into ME/CFS research at Stanford University and Harvard University. Overall, the future for ME/CFS is promising.