Friday 8th February 2019
Latest news and research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Welcome to the Seventeenth Emerge Australia Media and Research Digest!
1 – Estimating prevalence, demographics, and costs of ME/CFS
Authors: Ashley R. Valdez, Elizabeth E. Hancock, Seyi Adebayo, et al.
This study utilised big data and machine learning to examine the prevalence and cost of ME/CFS in the United States of America. The authors found that ME/CFS patients have up to fifty percent higher medical costs than those with multiple sclerosis (MS) or lupus, illnesses with similar characteristics to ME/CFS. The overall economic cost of the illness was estimated to be around $17 to $24 billion dollars (in 2008) with $9.1 billion attributed to loss of labour and household productivity.
The authors also found that ME/CFS had an incidence rate of 857 per 100,000 or 0.86% within the U.S. This rate was derived from the ME only diagnosis criteria, rather than the more common CFS criteria, which may include individuals with a CFS-like illness but whom do not qualify as ill with ME.
The paper concludes by calling for additional education for clinicians and other healthcare providers to support ME/CFS patients.
2 – Historic parliamentary debate shaped by people with ME/CFS
Authors: ME Action
Debate link: https://parliamentlive.tv/event/index/d7401af9-0971-4d2c-a875-a9170495bd8b?in=15:29:40
A historic ME/CFS parliamentary debate took place in London, United Kingdom on the 24 January 2019 where 40 members of the British Parliament introduced a motion to support ME/CFS in various forms.
The motion, which passed unanimously, asked for an increase in funding for biomedical research into ME/CFS, suspension of graded exercise therapy (GET) and cognitive behaviour therapy (CBT) as a means of treatment, and updating of training for GPs and medical professionals.
Overall, the debate represents a critical milestone for ME/CFS as the illness continues to gain worldwide recognition.
3 – Could the gut cure neuroinflammation? An MS and ME/CFS/FM inquiry
Authors: Cort Johnson
Recent research indicates that ME/CFS can be considered to be a neuroinflammation disorder and may be in the same broad category as multiple sclerosis (MS) and Parkinson’s disease. This study builds on these findings by exploring the gut and its prominent role in reducing neuroinflammation in MS patients.
Recent research into MS has discovered that the gut can make B-cells produce IgA antibodies which helps to reduces neuroinflammation. B-cells are white blood cells which are part of the immune system. Researchers found that B cells were transported to the gut where, when certain gut bacteria is triggered, they can produce IgA antibodies that fight off neuroinflammation.
While this research was predominantly looking at potential treatments for MS, Jarred Younger, an ME/CFS researcher, “believes that MS and ME/CFS could turn out to be close cousins” and “neuroinflammation present in both diseases may be similar”. Therefore, research into and potential treatments for MS could also benefit those with ME/CFS.
4 – The ME Show with Gary Burgess
Author: ME Association
Episodes one and two of the second series of the ME Show with Gary Burgess are now available online. Throughout the series Burgess will be focusing on experts in ME.
Episode one contains an interview with the ME Association’s medical advisor Dr Charles Shepherd. They talk about the UK Parliamentary debate on ME, ME in the media, the review of NICE (National Institute for Clinical Excellence) guidelines in the UK, recent research and the importance of international conferences and increased government funding.
Episode two contains an interview with Linda Tannenbaum from the Open Medicine Foundation (OMF), which fundraises millions of dollars to go into ME research annually. They talk about Tannenbaum’s personal experience with ME, the collaboration with Dr Ron Davis, the challenges faced in raising funds, and research projects OMF are currently funding.
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