Friday 28th September 2018
Welcome to the Eleventh Emerge Australia Media and Research Digest!
The fortnightly summary of media and research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
1 – Netflix is televising prejudice against the chronically ill
Author: Rehmeyer, J.
Link: http://www.latimes.com/opinion/op-ed/la-oe-rehmeyer-scientific-ethical-lapses-in-neflix-series-on-chronic-illness-20180917-story.html
This opinion piece in the LA Times discusses how the recently aired “Afflicted” series on Netflix gives an inaccurate and biased portrayal of chronic illnesses – including ME/CFS. The show has been heavily criticized by both its participants and other patient groups.
The article highlights the way that producers on the show portrayed the chosen chronic illnesses as psychological. The piece states that shows such as this fuel existing scepticism in the medical community, stifle research funding and hinder greater public awareness and understanding.
Currently ME/CFS receives just $15 million in annual research funding which is equivalent to $15 per patient in the USA.
2 – The great Chronic Fatigue Syndrome community gene study breaks new ground
Author: Johnson, C.
Link: http://www.healthrising.org/blog/2018/08/31/the-great-chronic-fatigue-syndrome-community-gene-breaks-new-ground/
Nancy Klimas from the Institute for Neuro Immune Medicine is conducting a research project to collect the genetic data of 10,000 ME/CFS patients. Previous studies have shown that there is a strong chance that there is a genetic contribution in ME/CFS.
To date, the study has collected data from over 450 participants which has been enough to find a high prevalence of a defect in the methyl-folate (MTHFR) gene. This gene contributes to folate metabolism and the initial results have been enough for leader of the study Christopher Lattimore to initiate a trial for a prescribed supplement for people with the defect.
Prospective participants need to have access to a computer, the internet and an email account. They also need to provide researchers with raw genetic data (via 23andme.com or dna.ancestry.com) and are required to fill out an online survey at their own pace.
For more information please visit the website below or email [email protected]
3 – Adam Bandt MP speaks about ME/CFS in Parliament
Video Link: http://www.facebook.com/Adam.Bandt.MP/videos/688257021539429/
“The effects of Myalgic Encephalomyelitis, or ME for short, are devastating enough to leave 25 per cent of sufferers housebound or bedbound and an estimated 75 per cent unable to work.
But, there are no government programs supporting ME awareness in Australia, there are no approved pharmaceutical treatments and, sadly, there is no cure.
It’s time to take this seriously and increase funding and research for this disease for the hundreds of thousands here and the missing millions around the world” (Adam Bandt).
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