Research Research Digest Media and Research Digest (010) Friday 7th September 2018 Welcome to the Tenth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – ME/CFS Syndrome and the Biopsychosocial Model Authors: Geraghty, K. & Blease, C. Link: https://www.tandfonline.com/doi/abs/10.1080/09638288.2018.1481149?journalCode=idre20 A paper has been published in Disability and Rehabilitation which analyses the shortcomings of the biopsychosocial model often used to treat ME/CFS patients. Evidence has been growing that there are significant physiological and cellular abnormalities in ME/CFS. Yet despite this, many medical practitioners continue to use the biopsychosocial model to guide treatments. This can result in numerous harms including difficulty reaching an acceptable diagnosis, misdiagnosis, trouble accessing medical care and social support, negative responses to controversial therapies (cognitive behavioural therapy and graded exercise therapy which have questionable success rates); and psychological harm. The study concludes by recommending that medical practitioners should adopt a more patient-centred approach and should “give greater prominence to patient narrative and experience of illness” as this will result in less overall harm. 2 – Presentation of Research to MPs in Canberra Author: Hutchinson, S. Link: https://ishoblog.com/2018/08/22/parliamentarians-learn-about-ground-breaking-science-on-debilitating-neurological-disease/ Griffith University Professors Don Staines and Sonya Marshall-Gradisnik presented their research on ME/CFS for multiple MPs and dozens of policy advisors in Canberra on 21st August 2018. The presentation was hosted by Green’s senator Jordon Steele-John who has an interest in ME/CFS. Their research has identified a group of genes (TRPM3 Markers) which are threat receptors found throughout the body. These genes can be triggered by illness, chemicals, stress and cell stretching as well as by other factors. The researchers reported that tests had been done to gauge gene expression between ME/CFS patients and healthy controls. Their results showed that cells containing these genes produced a lower capacity for calcium ion transfer between and within cells. As calcium is vital for cellular energy production, the researchers believe that this could explain the varying symptoms of ME/CFS patients and their severity. Don Staines said that given these findings, “recommendations to exercise patients are wrong” as it places additional demand for calcium in cells and therefore graded exercise therapy would actually make patients worse. At this stage, $13 million is needed to expand the research. Half of this has already been raised through philanthropic donations with calls for an additional $6.5 million in federal funding to be made. While the professors are reluctant to give timelines for advances in diagnostic tests and therapeutic drugs, “they were working with a leading Australian pathology service provider with a timeline of three years for both projects”. 3 – Open Letter Calling on The Lancet to Review the Pace Trials Link: https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh The Times UK published an article on August 21st reporting on the publication of an open letter calling for The Lancet to review the “Flawed” PACE trials. The letter was signed by more than a hundred academics, ten MPs and a number of patient groups including Emerge Australia and Emerge CEO Dr Heidi Nicholl. The PACE trial has been under increasing scrutiny, having received wide criticism, especially from ME/CFS sufferers. The letter states that the “2011 Pace trial, which recommended therapy and exercise as a treatment for the condition, had ‘major flaws’ and ‘unacceptable methodological lapses' greater prominence to patient narrative and experience of illness” as this will result in less overall harm. 4 – David Tuller Podcast Author: Tuller, D. Link: http://www.microbe.tv/twiv/twiv-special-david-tuller-paceman/ David Tuller returns to provide an update of his investigative work to expose the methodological and ethical problems with the PACE trial for ME/CFS.