Research Research Digest Media and Research Digest (002) Friday 11th May 2018 Welcome to the Second Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Dr David Tuller and Professor Andrew Lloyd discuss CBT and GET Link: http://www.virology.ws/2018/04/04/trial-by-error-a-post-about-andrew-lloyd/ Dr David Tuller interviews Professor Andrew Lloyd during which they discuss their disagreements about Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Professor Lloyd’s reinstated belief in GET. Professor Lloyd did reject the de-conditioning hypothesis and stated his belief that ME/CFS is a “physiological disorder linked to aberrant neurological response in the central nervous system.” Professor Lloyd hypothesizes that this could result in ME/CFS patients being hypersensitive to stimuli. He believes that “a bio-marker related to microglial activity in the brain could eventually be found but that investigations of blood in other parts of the body will ultimately prove fruitless.” He believes that ME/CFS patients should receive social benefits – once they have gone through the rehabilitation program. 2 – Disequilibrium and orthostatic intolerance in patients with ME/CFS Link: https://www.prohealth.com/library/disequilibrium-orthostatic-intolerance-patients-cfs-79582 A study done by the Japanese college of Cardiology found that disequilibrium (instability when standing) may contribute to ME patients’ orthostatic intolerance (OI) more than postural orthostatic tachycardia syndrome (POTS). Orthostatic intolerance is a common symptom amongst ME patients, as it significantly limits a person’s functionality. In this study, a neurological examination and a 10 minute standing test were conducted on a small group of ME patients. The results found that most patients suffered from standing and sitting intolerances. In addition to this they found that those exhibiting disequilibrium were more likely to fail the standing test compared to those with POTS. They conclude therefore that disequilibrium is an influential contributing factor to Orthostatic Intolerance. 3 – 11-year-old girl with Chronic Fatigue Syndrome Link 1: http://metro.co.uk/2018/05/01/an-11-year-old-has-become-one-of-the-youngest-people-to-suffer-with-me-7512031/ Link 2: http://www.tv3.ie/xpose/article/real-life/266473/Mum-reveals-how-daughter-went-from-active-11yearold-to-a-recluse-after-being-diagnosed-with-ME Libby Seath, an 11-year-old living with ME/CFS, has transformed from being an active sport-loving girl to one too tired to even go to school. Libby got her diagnosis from a paediatrician at the Countess of Chester Hospital who concluded that she succumbed to ME/CFS after contracting glandular fever. Libby faces many challenges including not having many people from the same age group for self-help support, not being able to keep up with her friends and not having the energy even to watch her favourite TV shows. Research shows that ME/CFS can have a devastating impact on children in terms of quality of life, education, social life, and family function at a crucial time of development in their life. More research needs to be done – not only involving adults with ME/CFS, but also including children and adolescents. 4 – Study finds Epstein-Barr virus alters Immune System Responses Shedding light on a possible mechanism of ME/CFS. Link: https://www.nature.com/articles/s41588-018-0102-3 A recent study published in Nature Genetics has shed light on how the Epstein-Barr virus (EBV) alters a person’s immune system responses, which could help explain the underlying mechanics of ME/CFS. EBV is a complex virus which can lead to glandular fever and is a common trigger for ME/CFS. The virus avoids elimination from the body by invading our immune cells. It does this by remaining dormant to avoid detection and reactivates periodically to infect other cells. We are well equipped to deal with EBV during childhood but, as we get older, our immune system can struggle to deal with such a potent virus. This study found that EBV while latent can still alter genes in our cells. This ‘gene switching on effect’ increases our risk of developing autoimmune diseases including Lupus, Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Juvenile Idiopathic Arthritis (JIA), Inflammatory Bowel Disease (IBD), Celiac Disease, and Type 1 Diabetes. Previous research in 2005 found that ME/CFS may be a prolonged immune response to EBV. This new study explains the underlying mechanisms of EBV which creates new research opportunities for many autoimmune and chronic illnesses including ME/CFS.