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.
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.
More details about each seminar will be available when they are finalised.
How to get there
Sophia House is at 225 Cross Road, Cumberland Park, at the western end of Cabra Dominican College, (i.e. the seaside end, not the hills end). It's ten minutes from the city centre by car or bus. Turn west (towards the sea, not the hills) from Goodwood Road. The carpark entrance is off Cross Road at the small Sophia House sign on a brick gate post. There's a walk from the carpark to Sophia House of about 50 metres but you can also be dropped off at the door as some people are.
Buses from the city originate on King William Road (Bus G10, G20, G1) and travel via Goodwood Road (to Flinders University, Panorama and Happy Valley). Alight at stop 9 and walk west along Cross Road. This is about 450 metres, so may be an issue for most of our members.
The Circle Line (Route 100) Stop 176 is about the closest you can get which is about 50 metres from Sophia's gate. Buses also travel from the city (Bus W90. W91) along Winston Avenue. Alight at stop 12, the Cross Road intersection, and walk east to Sophia.
If you haven't been to Sophia House before, it is a particularly comfortable venue with chairs, a couple of sofas and a decent carpet if you are better lying on the floor. Bring whatever you need to be comfortable.
Many people with ME/CFS are extremely chemically sensitive, so we ask attendees to refrain from wearing aftershaves, perfumes etc, and please refrain from smoking at our meetings. We will make every effort to clear the venue of fragrances and chemicals. There have been MCS issues there in the past and we have been in contact with Sofia's management to find ways to minimise or remove any potential issues for future meetings. We will continue to make every effort we can to minimise these problems at our meetings.
Please note that this program is subject to change.
WASHINGTON, D.C., USA, November 16, 2017 /EINPresswire.com/ -- How does a man who wanted to be in the theater, end up as maybe the nation’s preeminent virus hunter, or, as he says, “medical detective.”
In the United States, Lipkin is fighting to understand one of the most awful and debilitating lifelong diseases: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, for which Lipkin says he uses the acronym ME/CFS.
This disease, according to Lipkin, is little understood by doctors and is hard to diagnose “as there are no biological markers.”
“It was rare pleasure to interview Dr. Lipkin. It was one of the best interviews I have had the honor of conducting in my own long career,” King said.
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
FATHER-of-five Conor Cahill is a man who always puts his best foot forward, even though he suffers from two debilitating illnesses — myalgic encephalomyelitis, known as M.E, and fibromyalgia.
“I was diagnosed four years ago,” says Conor, 47, of Cloyne. “I was dealing with a lot of issues at the time. The origins of M.E can be viral, environmental, hormonal, genetic, neurological and immunological, or a combination of one or more. Stress may have triggered my M.E.”
However, he ignored the aches and fatigue, the burning joints and weakness and wooziness, when he walked more than 350 km of the Camino de Santiago pilgrimage in the summer.
He was a man on a mission, as he did it to mark the 30th anniversary of Deaf Enterprises.
Conor joined Deaf Enterprises two years ago and is manager of a local social enterprise which has been providing training and employment to Cork’s deaf community for 28 years.
When Jen Brea, a PhD student at Harvard, came down with a mysterious and debilitating chronic illness, she took to filming her struggles on her phone as a tool to communicate with her doctors.
The symptoms of ME/CFS (also called myalgic encephalomyelitis or chronic fatigue syndrome) are both physical and cognitive. I can tell you from experience, it’s like having the flu with a hangover while someone turns gravity up to 100. There is no effective treatment. Symptoms worsen with activity, but are largely invisible and can be inconsistent, making them difficult to detect in a quick appointment with a GP.
The footage of Jen struggling to crawl across the floor, labouring to form simple words and howling in pain while collapsing from her wheelchair eventually became the foundation for Unrest, a powerful documentary on the collective trauma of a long-ignored patient community.
While ME follows other auto-immune illnesses in that more women are diagnosed with it than men, very little research has been done to show why.
In addition to this, since the illness was first identified in the 1950s, doctors have been unable to properly understand the root cause of it. In fact, early cases were deemed "hysteria" or "yuppie flu" – a problematic start for a much misunderstood illness.
Hannah Price, 23, has had ME since she was 11 years old. She tells IBTimes UK: "Invisible illnesses are hard for people to comprehend, because from the outside I look fine, so I've had to deal with a lot of Ignorance and 'it's all in your head' – but this is changing and makes a huge difference to my outlook."
Chronic fatigue syndrome is not a psychological disorder as previously thought, researchers claim after finding evidence that the condition is caused by changes in brain chemistry.
Controversy has raged for nearly 30 years on whether the debilitating condition that causes pain, physical and mental fatigue and cognitive dysfunction was a genuine illness as critics speculated that it was all in the mind.
Now researchers have found changing levels in a brain molecule called miRNA in patients, which is responsible for turning protein production on and off, subsequently causing the tiring symptoms.
The findings lay the groundwork to better treat and understand the disorder that affects nearly three million Americans.
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.
One man’s campaign to raise awareness of a debilitating condition has reached social media and could hit the cinema screen.
Brett Robertson, of Bury St Edmunds, has suffered with fibromyalgia, a condition which causes pain, fatigue and muscle stiffness, for four years and is registered disabled as a result.
During one of his flare-ups he was researching support for people with the condition while resting in bed, when he realised he needed to take matters into his own hands.
“I was laid there and thought there was no advice of where to go to get help, so I thought I would set up my own support group on Facebook. Within a week we had 25 members and within a month or so we have 53.
“We are all sharing things that have worked for us. If people know they are not on their own, it makes them feel better.”
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 13 November 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.