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.
Saturday 9 April 2016
A screening of the ME/CFS documentary, Forgotten Plague.
Saturday 25 June 2016
1:30pm Dr Ian Buttfield discusses the ANRES website. Mr Max Nelson discusses his PhD and two-day bike test study. Dr Katia Ferrar presents an information document on her research.
Saturday 27 August 2016 Annual General Meeting
1:30pm Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.
Saturday 19 November 2016
1:30pm Dr Rachel Wells talks about the new Autonomia Clinic at the Royal Adelaide Hospital and what they are doing about POTS and other dysautonomia symptoms common in ME/CFS.
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.
Shelleen Turned Her Faith Into Music During Trying Times
Growing up in northern Pennsylvania’s Potter County, the singer-songwriter and author lived in a one-room cabin with no electricity or running water, on a 77-acre plot of land. The driveway leading to her family’s home was a mile long.
For fun, she rode horses and played on her high school’s award-winning basketball team.
When her guidance counselor told her she received a letter inviting Weaver to enter a pageant, Weaver laughed. When a second letter came, she took a closer look.
Weaver entered the pageant, and for the first time shared her original poems. She used poetry as an emotional outlet, often writing about the struggles of living with the chronic fatigue syndrome she was diagnosed with at age 16.
A group of Norwegian researchers has learned that patients with fibromyalgia or widespread pain have an increased probability for hearing loss. This new finding demonstrates that fibromyalgia, and also other musculoskeletal pain disorders, may be associated with an overall dysregulation of the central nervous system.
I am thrilled and humbled to announce that our documentary film about M.E. will premiere this January at the Sundance Film Festival. This has been a long, incredible, hard fought, life-destroying, friendship-making, world-changing, horrible, wondrous journey. When I began, I had never made a film. I could barely make it down the stairs most days, let alone leave my house. I didn't know how I was going to get here, but I had the belief and conviction that this story deserved and needed to be told. And that in telling it, we could change our lives. It took three years, 2,593 Kickstarter backers, a dozen amazing partners, an incredible, gifted team of filmmakers, but we’ve done that part. Now, the second part begins.
There are so, so many people to thank. You know who you are and I hold you in my heart every single day. I dedicate this moment and everything extraordinary to the love of my life, Omar.
We have some big news I want to share: we’re officially changing the name of "Canary in a Coal Mine" to "Unrest." Over the last three years, I’ve grown very attached to the name Canary, but it needed to change and I want to tell you why.
First, one of the defining challenges of this illness has been the horrible name, Chronic Fatigue Syndrome. Doctors, media, coworkers and even loved ones misinterpret us as just being tired, and often even accuse seriously ill patients of being lazy.
The truth is, patients who have been bedridden for years are not tired or lazy or ‘resting’; they are in a constant state of fighting just to be alive. Whether you are mild or severe, you know how hard it can be to push through, day in and day out. Even when we might look like we’re resting, it’s a fight. I wanted a name that represented that struggle. Unrest describes the experience of all of us who are constantly resisting both the limits of our bodies and the larger social stigmas that have held back equal access to treatment and care.
Second, one of the most exciting developments over the last year has been the rise of a global movement of patients and allies coming together to fight for health equality. The folks drawing attention to the are also engaged in a form of unrest. We are attempting to disrupt the status quo that consigns desperately sick people to the margins of medicine and society. Coming together, engaging in collective “unrest” – I wanted to capture some of that spirit in the title, too.
Finally, Unrest represents the hope we all share: that with a real investment in this disease, we can discover the root causes and develop treatments. Then maybe someday we can “un-rest” and get back to our lives.
In 2013, the midst of our Kickstarter campaign, one patient said, “It’s an uprising from our beds.” I’ve returned to that phrase again and again when thinking about how this film might do good in the world. I want people outside of our circles of ME patients, friends and family to see how we, people with so little to spare, are coming together, loving and supporting each other and challenging some of the biggest forces in society. Whether in bed, at work, or outside of government offices, we are in a state of unrest for our health and for justice.
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.
UNIVERSITY scientists are leading research to develop a simple blood test for the chronic fatigue syndrome ME.
Researchers from Newcastle and Oxford Universities have been awarded £50,000 funding from the ME Association to spend 12 months analysing nearly 300 blood samples, looking at metabolomics – chemical clues that are left behind after changes in cells.
Nine months ago, ultra runner Malcolm Law reached breaking point, his body shutting down after years of relentless running and back-to-back marathons.
The 55-year-old spent years running daily, often for hours at a time, striding out up to 150 kilometres a week. Last February, Wanaka-based Law donned his trail shoes for his biggest physical challenge yet - running 50 mountain marathons in 50 days, conquering 42kms of peaks a day without a break. Traversing 1650kms, he raised $521,000 for the Mental Health Foundation for his conquest (the fundraiser is still open) and made a documentary, High Five-O. But the hours and kilometres of pounding and pushing his body over the years finally took its toll.
A year after stepping over the finish line, the father of one was diagnosed with chronic fatigue syndrome, brought on from overdoing it. "I really thought I was unbreakable," he recalls. "But I was a basket case."
"I felt very old, very tired, and I had dizzy spells. I had a lot of mysterious aches and pains, headaches, and many and varied symptoms."