Research Research Digest Media and Research Digest (012) Friday 12th October 2018 Welcome to the Twelfth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Neuroinflammation in the brain found in ME/CFS patients Author: Johnson, C. Link: https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/ It has long been thought that low-level neuro-inflammation might be a contributing factor in the overwhelming fatigue experience by patients with ME/CFS. In 2014, Japanese researchers identified just that using Positron Emission Tomography (PET) scans. The initial study involved only 19 test subjects, although larger studies have been done subsequently which have corroborated the results. Recently, a new non-invasive method to map neuroinflammation in the brain has been created by Professor Jarred Younger from the University of Alabama. The method detects slight variations in temperature caused by inflammation. Professor Younger has developed a method which uses magnetic resonance spectroscopic thermometry (MRSt) to create a heat map of the brain. The results clearly show that ME/CFS patients suffer from neuroinflammation in the brain. The areas identified are virtually the same as those studies from the Japanese researchers. Professor Younger also found lactate, a product of anaerobic metabolism, in the brain. It is thought that microglia cells, a type of immune cell, may be responsible for the inflammation as they are highly sensitive and will produce many different types of inflammatory mediators in response to various stressors. These findings could have dramatic treatment implications and “lead the scientific and medical communities to focus less on drugs that target the nervous system and more on ways to reduce inflammation”. 2 – Guidelines for ME/CFS outdated and dangerous Author: Nelson, F. Link: http://medicalrepublic.com.au/guidelines-mecfs-outdated-dangerous/16761 Writing in The Medical Republic, Felicity Nelson discusses how NICE guidelines, based on the controversial (2011) PACE trials, currently recommend graded exercise therapy (GET) and cognitive behavioural therapy (CBT). CBT should only be used to support patients and not to perpetuate the myth that ME/CFS is a psychological disorder, medical ethicist Heidi Nicholl, the CEO of Emerge Australia, said. “We don’t support research based on an assumption that ME/CFS is based on deconditioning or a fear of exercise,” she said. NHMRC has an advisory committee currently in place investigating ME/CFS. The committee is expected to release a report for public consultation at the end of 2018. Dr Donohoe, a GP based in Sydney, is quoted as saying that GET is not suitable for many ME/CFS patients and that new guidelines “ought to provide GPs with a practical list of treatment options that they could work through with the patient to address symptoms such as pain and sleep problems”. 3 – Tireless work on Chronic Fatigue Syndrome Author: Regan, K. Link: https://www.ithaca.edu/news/tireless-work-chronic-fatigue-syndrome The Workwell Foundation, a research group in California, has been successfully verifying ME/CFS using two consecutive days of VO2 Max tests which measure maximum oxygen use during intense exercise. This gauges a person’s cardiovascular and aerobic endurance. People with ME/CFS show a dramatic decrease in VO2 on the second day when compared to controls. Word of this successful method of verifying the disease eventually spread (via a friend with ME/CFS) to Professor Betsy Keller of Ithaca College. Professor Keller has now tested about 150 ME/CFS patients giving her an incredible depth of experience with the condition. She is now amongst the leaders of a new collaborative ME/CFS research centre encompassing multiple prestigious medical institutions. This new research centre has recently received a $9.4 million NIH grant which will cover 5 years of multi-faceted research which it is hoped will pinpoint the cause of ME/CFS. The new research will involve 3 years of VO2 tests at multiple locations. Each patient will have additional comprehensive measurements taken including MRI scans, blood, urine tests and electrocardiograms. This data will then be distributed for further investigation in three main areas: Research into the role of extracellular vesicles Sequencing of RNA of the white blood cells of patients before and after exercise to see immune system responses Study of brain scan images, looking for signs of neuroinflammation and oxidative stress 4 – In the USA, Chronic Fatigue Syndrome Advisory Committee Dissolved Link: http://go.solvecfs.org/webmail/192652/80108809/88b66a0e49f980f57955ed3c964bfa02a41f6037809e51d52a289cfbb02d7ec9 On the 7th of September 2018, the Department for Health and Human Services in the USA announced that the charter for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) should be allowed to expire. Carol Head of the Solve ME/CFS Initiative explains, “Formed in 2002, CFSAC was the only federal entity focused entirely on ME/CFS. It included many relevant federal agencies, including NIH (National Institutes of Health), CDC (Centers for Disease Control and Prevention), the VA (Veteran’s Administration) and the SSA (Social Security Administration)”. “Sadly, out of all the discretionary committees under Health and Human Services, it seems that CFSAC was the only committee that the administration has chosen to eliminate”. The Solve ME/CFS Initiative has launched a ‘call to action’ to help patients to ask Congress to pass legislation to ensure ME/CFS is both funded and represented and that a new committee be established.