Mailing address: PO Box 28,
South Australia 5007
Office: Closed while relocating
1300 128 339
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 the various research projects, diets, medications, therapies 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
Ryan Prior's life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat.
Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery.
He is shocked that millions globally remain sidelined by the same disease, many bedridden for decades.
Forgotten Plague is a journey into the hidden world of myalgic encephalomyelitis (chronic fatigue syndrome).
It is a chilling tale of our medical system's failures in addressing many chronic, complex diseases. Yet it is also a riveting story of science's remarkable ability to transform medicine and improve human life itself.
Diseasemaps: World maps of chronic and rare diseases and other syndromes and conditions
Connect with people who share your condition and help each other
Information on diseasemaps.org is reported by users and is not medical advice. Diseasemaps 2016
We connect people who are suffering from different conditions to help them finding things to make their lives better. We help each other through:
Maps – Connect with people who share your condition. Forums – Ask your questions and find out the best answers. Statistics – Check the impact of a condition in people's life. Stories – Share your story. Your experience can help others. Advice – Find out things that have helped others to improve.
In fibromyalgia patients, going gluten-free may be a potential dietary intervention. Fibromyalgia currently does not have a cure, but treatments are available to ease symptoms for improving the quality of life.
The researchers conducted a review of studies based on fibromyalgia and nutrition. Current treatment guidelines consist of a multidisciplinary approach of pharmacological and nonpharmacological interventions.
Dr. Fred Friedberg explains the heart monitor and
electrode placement used in the chronic fatigue syndrome
study to fellow investigator Dr. Patricia Bruckenthal of the
School of Nursing, and Jenna Adamowicz, center, study
coordinator from the Department Psychiatry. (Credit: Image courtesy of Stony Brook University)
By better understanding daily activity levels and heart rate patterns of those who suffer from Chronic Fatigue Syndrome (CFS), scientists hope to discover more about this complex illness condition. Fred Friedberg, PhD, Associate Professor of Psychiatry at Stony Brook University School of Medicine, has received a four-year $1.5 million grant from the National Institutes of Health to take this research approach to determine if heart rate fluctuations in combination with certain daily activity patterns can be used to predict or prevent relapse in people with CFS.
According to Dr. Friedberg, also the President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, CFS affects some one million people in the United State and millions worldwide. This condition is characterized by a state of chronic fatigue and other debilitating symptoms, such as post-exertional collapse and cognitive difficulties. These symptoms and related impairments persist for more than six months and have no clearly identified cause.
You are invited to participate in the research project described below.
What is the project about?
The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.
Who is undertaking the project?
This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.
Who is invited to participate?
Participation in this study is open to people who:
Have received a diagnosis of Fibromyalgia from a medical practitioner
Are Australian residents
Are over the age of 18
Are proficient in English (no translation services available)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, complex, disabling illness which causes incapacitating fatigue, pain, sleep dysfunction, cognitive impairment and other neurological, autonomic and immune symptoms. It can be likened to having a severe case of glandular fever and the flu and having a run a marathon all at the same time… and that goes on for years. Severe sufferers describe their experience as a ‘living death’. Occasionally it does cause death.
The key symptom for ME/CFS is Post Exertional Debility, which means that symptoms worsen after physical or cognitive effort. This is unlike healthy fatigue, which you can often push through and can be reversed by sleep. For people with ME/CFS, everyday tasks like showering, cleaning your teeth, talking or reading can make you even more unwell. Many of us are unaware that the very young and adolescents can suffer from ME/CFS, disrupting schooling, and like Multiple Sclerosis, Lupus and Rheumatoid Arthritis, it affects more women than men.
Impact on individuals and their families
A conservative figure tells us that approximately 101,000 Australians suffer from ME/CFS, and 25% of these sufferers are housebound or bedbound!
As a community we are largely unaware of the prevalence and the significant impact this illness has on the lives of those with ME/CFS and their families. What we do know is that ME/CFS has the lowest health-related quality of life score compared to 21 major illnesses, including chronic renal failure, stroke, heart angina, colon, prostate, lung and breast cancer.
People with ME/CFS often experience profound isolation as family and friends struggle to understand the illness and the limitations it imposes on sufferers. It can often be difficult for people to know how to engage with and support someone with ME/CFS.
To date there are no officially approved medical treatments. Patients often have to do their own research and be their own practitioners, often relying heavily on nutritional supplements to aid in relieving some of their many symptoms.
Broader impact on society
ME/CFS costs Australia billions of dollars every year in lost income, medical support and social services. Federal government research funding was $121,000 in 2015 – given the burden of the illness on individuals, families and communities – this is not significant. Public awareness, donations and fundraising are all insufficient due to patients being too unwell to take action on their own behalf.
You might have seen buildings lit up in blue on 12 May… this was to mark International Awareness Day for ME/CFS. On 25 May there was a global protest involving many cities around the world called #MissingMillions. This highlighted the life roles lost to this debilitating, life-sapping illness and called for more research funding, treatments, support for patients and education for health professionals.
You can still help! Raise awareness by placing photos of empty shoes on social media, with the hashtag #putoutyourshoes to represent a person with ME/CFS who is missing out on work, school, sport, hobbies or the social activities in their life.
If you would like more information on this serious and somewhat enigmatic issue you can find out more here: http://may12th.org.au/.
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.
When Morisaki took the field for Sanfrecce’s May 21 match against Gamba Osaka, it marked the 400th first-division match of the 35-year-old’s career, making him the first Sanfrecce player to achieve the mark and 14th overall in the league history.
Killer cell immunoglobulin-like receptor (KIR) genes encode for activating and inhibitory surface receptors, which are correlated with the regulation of Natural Killer (NK) cell cytotoxic activity.
Reduced NK cell cytotoxic activity has been consistently reported in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients, and KIR haplotypes and allelic polymorphism remain to be investigated.
The aim of this article was to conduct a pilot study to examine KIR genotypes, haplotypes, and allelic polymorphism in CFS/ME patients and nonfatigued controls (NFCs).
Comparison of KIR and allelic polymorphism frequencies revealed no significant differences between 20 CFS/ME patients and 20 NFCs. A lower frequency of the telomeric A/B motif (P < 0.05) was observed in CFS/ME patients compared with NFCs.
This pilot study is the first to report the differences in the frequency of KIR on the telomeric A/B motif in CFS/ME patients.
Further studies with a larger CFS/ME cohort are required to validate these results.
A letter to the editor of the BioMed Central Journal urged more in depth mitochondrial testing than has been done be done in ME/CFS. The letter referred to a study done by an ME/CFS researcher, Maureen Hanson, and funded by the Chronic Fatigue Initiative.
The CFI is very interested in the mitochondria and it is funding more research by Dr. Hanson - so they made an honest effort to find something. They did find something, but the results were not particularly encouraging.
No ME/CFS subject exhibited known disease-causing mtDNA mutations. Extent of heteroplasmy was low in all subjects. Although no association between mtDNA SNPs and ME/CFS vs. healthy status was observed, haplogroups J, U and H as well as eight SNPs in ME/CFS cases were significantly associated with individual symptoms, symptom clusters, or symptom severity.
Analysis of mitochondrial genomes in ME/CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to ME/CFS of individuals carrying particular mitochondrial genomes or SNPs was observed.
The two researcher researchers proposed that study into the mitochondria in ME/CFS be deepened. They proposed
that nuclear DNA (nDNA) be studied (as well as mtDNA)
that parts of the mitochondria other than the respiratory chain such as betaoxidation, hem synthesis, calcium handling, coenzyme-Q metabolism, or the urea cycle be examined
that analyses be done on other than blood lymphocytes
that immune-histological and biochemical examinations of muscle biopsies be done. In fact, they said these types of investigations "were essential not to miss dysfunction of the respiratory chain or other mitochondrial pathways.
The mitochondria are known to be very complex. In fact, one of the problems facing the field apparently is just how complex they are and this letter reflected that.
Myalgic encephalomyelitis patients have responded well to frequent vitamin B12 injections with oral folic acid. In the study, researchers analyzed close to 40 ME patients with or without fibromyalgia who received the B12 at least once a week for anywhere from six months to several years. Patients were grouped into good and mild responders for B12 and folic acid therapy. It turned out that 80 percent of the good responders had myalgic encephalomyelitis and 52 percent of mild responders had ME and fibromyalgia.