ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.
South Australian news
Saturday 29 April 2017
Here is an opportunity to support our community with minimal cost to health.
Please share widely and let family and friends know that they can purchase their Entertainment Books from us.
For many of us who are unable to dine out, there are many other savings available such as discounts from selected supermarkets and other retailers.
The books and/or vouchers come in handy as gifts for others too!
Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?
If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'
Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.
The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.
The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.
If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph.  8302 1365). People who cannot tolerate more than five minutes of moving images (e.g. TV) should not apply.
We look forward to hearing from you.
Accredited Exercise Physiologist
University of South Australia
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.
More than 17 million people suffer from
Myalgic Encephalomyelitis (ME), also known as
chronic fatigue syndrome, around the world.
Around 80 per cent of those who contract the
disease find it is triggered by an acute infection.
Unrest director documents debilitating life with chronic fatigue syndrome
Jennifer Brea was in the prime of her life — working on her PhD at a prestigious university, newly married and living an active lifestyle when it all changed. After contracting an infection, she never quite recovered.
"It was a really scary and isolating experience to have my body fall apart and to not have anyone be able to explain to me what was happening to or what I can expect ... I went to doctor after doctor and was often told I was stressed or depressed and it took me quite some time to get a diagnosis," she tells The Current's guest host Laura Lynch recalling that time.
“Much like IBS, ME/CFS may involve a breakdown in the bidirectional communication between the brain and the gut mediated by bacteria, their metabolites, and the molecules they influence. By identifying the specific bacteria involved, we are one step closer to more accurate diagnosis and targeted therapies.”
~ Ian Lipkin, director of CII and John Snow Professor of Epidemiology at Columbia’s Mailman School.
Anticipated work from the CII teams’ early investigative research into ME/CFS is starting to be published. The new study in the journal Microbiome from Drs Ian Lipkin and Mady Hornig at Columbia University Center for Infection and Immunity (CII) finds abnormal levels of certain types of bacteria in the gut microbiome of ME/CFS patients. It also found disturbances in bacterial metabolic pathways that, in combination with the changes in bacteria, may influence disease severity.
Researchers took fecal and blood samples from 50 patients and 50 healthy controls. They analysed cytokines in the blood, as they did in their original cytokine study and they applied metagenomics to the fecal samples. Metagenomics is a new field that combines remarkable technology for sequencing huge amounts of DNA with a kind of sophisticated genetic detective work to not only identify which bacteria are present, but also which bacterial metabolic pathways are active too. ME/CFS patients differed from controls in both.
People with fibromyalgia have more difficulty falling asleep and sleep worse and less compared to the general population, according to the results of a new review. Researchers called for the attention of doctors in treating sleep disturbances in patients with fibromyalgia, as better sleep may help improve disease symptoms.
Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.
#BedFest is a virtual concert to showcase the experience of living with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome as expressed through song, spoken word, poetry or silent expression in the form of a short video clip or photo. #BedFest premieres on Saturday, May 6th.
#MEAction will showcase your submissions on our website as part of a virtual concert on May 6th. We will also host a BlueJeans call for participants to discuss their work, the act of expressing oneself while suffering with ME, and for the community to share the moment together.
Noa from Germany sent in this beautiful song she wrote called, “Sometimes I Cry,” for #Bedfest, which she performed on a tenor ukulele.
Participate in the #BelieveME video
As part of the festival, we are also partnering with musician Kaeley Pruitt-Hamm who has recorded an EP Hi From Pillows from her bed. As part of #BedFest, Kaeley will re-release her music video, “Believe Her,” to include faces of people with ME from around the world. We want to represent the diversity of people with ME and welcome submissions from all ages, races and genders.
To be part of the re-mix of Kaeley’s music video, send in a still photo of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. Send in submissions to email@example.com.
We welcome any kind of performance or song about the experience of living with, or being diagnosed with ME or ME/CFS. You may consider expressing the theme of not being believed for your illness to correspond with Kaeley’s music video “Believe Her.”
Performance options may include, but are not limited to:
song (a cover song is fine)
message (written, acted out, painted etc.)
silent demonstration (for example, filming a clip of yourself lying in bed with your eyes and ears covered)
Time limit for video, 1-5 mins. We suggest you submit a video since #BedFest is a virtual concert, but if you feel that a photo captures your expression better, we welcome that, as well.
Along with your submission, include a little bit about yourself in the email (if you are comfortable), such as your age, how long you’ve been ill, city of residence, former occupation, your current hobbies, what is the first thing you’d do if you recovered today etc.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 24 April 2017
ME/CFS Australia (SA) has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.
By Deborah Marlin, Committee Member
Originally published on 30 March 2017
No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.
In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”
There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.