Research Research Digest Media and Research Digest (008) Friday 10th August 2018 Welcome to the Eighth Emerge Australia Media and Research Digest! The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1 – Center for Disease Control updates ME/CFS website content Link: http://outbreaknewstoday.com/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-cdc-releases-updated-website-39387/ It is widely recognised that many health care providers remain largely unaware of ME/CFS. In the United States it is estimated that information about ME/CFS is provided in less than a third of medical curriculums and less than half of all medical textbooks. This lack of education and awareness within the medical community means that patients often struggle with symptoms for extended periods of time before finally getting a diagnosis. The Centers for Disease Control and Prevention (CDC) has now updated its website information about ME/CFS to guide clinicians on how to best help their patients to manage the illness. This is a big step forward for people with ME/CFS, and those campaigning for better awareness of the condition, as the CDC is a leading public health institute. It is hoped that this update will reach a large number of medical practitioners and improve rates of diagnosis for patients. 2 – Treating patients suffering from ME/CFS with Sodium Dichloroacetate Author: Comhaire, F. Link: https://www.ncbi.nlm.nih.gov/pubmed/29602463 An open-label, proof-of-principle pilot trial from Belgium was recently done involving 22 patients diagnosed with ME/CFS. They were treated with a nutriceutical consisting of 400 mg of sodium salt of dichloroacetate (DCA) plus 100 mg Vitamin B1, with alfa-lipoic acid (ALA), acetyl-1-carnitine, and the oxidoreductase ubiquinone Q10. The aim of the study was to restore mitochondrial energy production, as suggested in hypotheses from other studies. DCA inhibits the pyruvate dehydrogenase kinase (PDHk) and exerts a direct stimulatory effect on the activity of pyruvate dehydrogenase, which boosts mitochondrial function and increases production of adenosine triphosphate (ATP). Trial results show that there was improvement in 10 patients, where their fatigue severity scale score reduced to almost half of that initially recorded. A number of co-morbidities were detected among the non-responders, which may affect the lack of response to nutriceutical treatment. 3 – Dr Shepherd provides an update on antibiotic use in ME and highlights concerns about quinolones and fluoroquinolones Link: https://www.meassociation.org.uk/2018/07/dr-shepherd-provides-an-update-on-antibiotic-use-in-m-e-and-highlights-concerns-about-quinolones-and-fluroquinolones-26-july-2018/ Dr Charles Shepherd, medical adviser for the UK based ME Association, has stated a number of concerns regarding the use of quinolones and fluoroquinolones for ME/CFS patients as they may cause side effects involving muscles and tendons. Dr Shepherd acknowledges that antibiotics, when used correctly, are an effective way of dealing with infection. This is especially important for ME/CFS patients as infections can be an important cause for relapse. However, a group of broad-spectrum antibiotics known as quinolones and fluoroquinolones can have adverse effects on pre-existing muscle disorders such as myasthenia gravis, as well as cause inflammation of the tendons (tendonitis). In addition to this, it is thought that these antibiotics act on the mitochondria and are reported to cause mitochondrial toxicity. The FDA has updated their warning related to these antibiotics to say “tendonitis, tendon rupture and irreversible nerve damage” and “risk of brain-related side-effects such as memory impairment, delirium, agitation and disorientation” might occur. The ME Association is recommending that “ where an antibiotic is required to treat an infection that is not related to ME/CFS, doctors should only use one of these drugs after careful consideration and if there is no equally effective alternative drug for that infection”.