Fri 10th August 2018
Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Welcome to the Eighth Emerge Australia Media and Research Digest!
We wanted to take a moment to thank everyone who participated in last weeks screening of Unrest at Bio21 in Melbourne. MP Adam Bandt gave a barnstorming opening address and the event was expertly MC’d by PBS’s Owen McKern. You can watch the opening of the event and listen to the speech here:
We had a wonderful turnout on the night with around one hundred and fifty Australian researchers, patients and the broader community getting together to collaborate, share research, insights and enjoy a glass of wine!
We’ve also had 3.4K views so far, for our Facebook live video of the Q&A which featured Dr Don Lewis (medical doctor, ME/CFS Discovery clinic), Dr Chris Armstrong (researcher, Bio21), Daniel Missailidis (PhD student, La Trobe), Fiona Marsden (patient and ME/CFS activist) and Heidi Nicholl (CEO, Emerge Australia). If you’d like to take a look the whole (90min!) Q&A video is available here:
We hope that you enjoy the digest. Thanks for reading!
– Dr Heidi Nicholl, CEO Emerge Australia
1. Center for Disease Control updates ME/CFS website content
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 curriculumsand 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
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
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”.
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