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.
Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states – including the UK – take action to address the biomedical healthcare needs of people with M.E.
Sonya Chowdhury, Chief Executive, Action for M.E. says, “International advocacy has brought about much-needed change in other illness fields, such as cancer and diabetes. The urgent need for appropriate biomedical care and support for people with M.E. cannot be understated. That we have the opportunity to drive this forward, targeting decision-makers at the highest level, is hugely exciting. It’s a big step for the charity, and our Board of Trustees has carefully considered this considerable investment, which will be regularly reviewed to ensure it delivers benefit for people with M.E.”
A man who suffers with a conditon which confines him to his bed for most of the week has made a music album which captures the realities of mental and long term illnesses.
Stephen MacLachlan, 34, started writing the album, called The Glitch, two-and-a-half years after he was diagnosed with Chronic Fatigue Syndrome in May 2014, which saw him bedridden for six months.
“I went from doing six or seven days teaching and working to hitting a brick wall. Lifting a glass of water was the extent of my capabilities,” said Stephen.
“I started writing the album in December 2016 because I just thought, well I have something to say now. Making music has never been a problem but I have just never had anything to write about. Lyrics have never been my strong point. I’ve always written instrumental stuff or written with other people so that was new to me.”
Washington: A new study has found that brain networks of patients with fibromyalgia primes for rapid and global, responses to minor changes. Fibromyalgia is a disorder characterised by widespread musculoskeletal pain accompanied by memory issues, sleep, fatigue, and memory issues.
It is believed that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. The new research states that hyper-reactive brain networks could play a part in the hypersensitivity of fibromyalgia. This abnormal hyper-sensitivity of brain networks, called Explosive Synchronization (ES), can be observed in other network phenomena as well across nature. The research details only the second study about ES in the human brain.
Volunteers Jenny Kinmont, Penelope McMillan,
Maddie West, Cecil Camilleri and
Josh Haste at the SAHMRI.
(Source: News Limited)
Meet some of the people who volunteer themselves to advances in medical science at SAHMRI
THEY are the altruistic “guinea pigs” — aged 9 to almost 80 — who advance the cause of medical science by giving their time and insights — not to mention blood and hair samples — for the sole purpose of helping others. Martina Simos reports.
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.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 15 January 2018
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.
I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.
If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.
This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.
Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.
For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
Before the debate on the recreational use of cannabis, Maltese patients, like their fellow Europeans, had already started inquiring about the medical use of the plant. But despite new legislation, they have been left hanging for more than two years and they now fear that the proposed amendments will push prices through the roof, writes Sarah Carabott.
After two decades battling an ailment that “robbed” her of her life, a window of hope opened in Joanne’s life when she heard of medical cannabis treatment for Fibromyalgia.
She went for it by the book – or so she thought. She obtained a recommendation from her GP and two consultant certificates saying her severe fibromyalgia was characterised by constant pain, tiredness and loss of function, and that the condition had not improved despite multiple attempts at treatment.
But when Joanne*, documents in hand, went to pick up her non-psychoactive cannabidiol (CBD) oil, Port Health asked her to obtain a prescription from an oncologist.
However, when she duly turned up again with the prescription, she was told it was missing a stamp. By then she was so exhausted, with her condition bearing down on her, that she gave up and left it with the Customs Department.
Navigating a research career along with a chronic illness, say many researchers, requires zeroing in on what is most essential.
Leonard Jason, a psychologist who was diagnosed in 1989 with myalgic encephalopathy/chronic fatigue syndrome (ME/CFS), realized that he needed to be strategic about his work and careful not to overtax himself.
His approach has led to recognition, including awards for excellence in research and, at one point, a position on a US federal panel advising about research on ME/CFS.
He recommends that scientists pursue the work that matters most to them.
“The reality is that you can’t do it all,” says Jason, of DePaul University in Chicago, Illinois. “Prioritization is absolutely critical when one is in a diminished state. If it’s trivial and you don’t care about it, let it go.”