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.
A Blackpool hotelier sang his heart out in the hope of supporting research into a debilitating condition that struck down his once healthy partner.
Clarendon Showtel owner James Reay’s partner of 16 years, Simon Dooley, 41, was diagnosed with chronic fatigue syndrome (M.E.) three years ago after falling and hitting his head during an onstage performance.
Now the pair have worked together to release a winter single to raise money for Action For ME.
‘Just Let Me Cry’, performed by James, 50, will be released on all major music sites on December 27 with the ambitious aim of raising £250,000 - £1 for every M.E. sufferer in the UK.
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.
Three sisters from Inkersall have told Peak FM of their struggle in coping with a genetic condition known as fibromyalgia.
Adrienne Lakin, Sarah Lakin and Leanne Marie Lakin all suffer from the condition, and they sat down and told Peak FM the harrowing details of their struggle to cope with it, and their fight to get the issue discussed in parliament.
So far they have received more than 10,000 signatures but require around 100,000 to get MP's to discuss it.
LISTEN: Three Chesterfield sisters discuss the difficulty of living with Fibromyalgia.
They have also set up a website and Facebook page to raise extra awareness of the condition, both of which are filled with information on the girls' campaign.
The petition to get Fibromyalgia discussed in parliament can be found here.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 11 December 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.
We would like to pay a special thanks to the nine South Australian sponsors who so very generously supported our recent event, the Adelaide premiere of the award-winning documentary, Unrest, on 9 November 2017:
Thank you to Andrew Beveridge of absCreative Professional Photography (ph: 0488 019 911) for your generosity in being our photographer for the night. Andrew supplied a fantastic selection of photos, some of which ended up in the online Advertiser.
Thank you to Jaz from Auto Paint Scratch & Chip Repairs for a generous raffle prize. You can contact Jaz on 0410 331 546 to discuss your car paint repair needs.
With thanks to the Broughton Rainbow Quilters for their generous donation of a beautiful quilt won by a very lucky raffle participant.
Thanks to former Adelaide Crow, Kris Massie, for his very generous donation of 36 gift vouchers from ChiPT (choose holistic inspiring personal training) which were part of the raffle prizes. (ph: 0402 900 107)
We thank South Australian-owned Drakes Supermarkets for their very kind sponsorship in providing a discounted price on the food platters, which were well received by our audience.
Thank you to members Jane Rasmussen, Lynn Newham and Melanie Kerber from the Ladybirds for providing a wonderful backdrop of ukulele and song for us on the night.
Thank you to Simon Tonkin and Masterplan (ph:  8193 5600) for your generous support in providing printing of the handouts for the evening.
Thank you Darius and Ben for making our event sparkle with your very generous donation of wines from Mocandunda. (ph: 0423 670 946)
Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia
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.
This holiday season, I would like to share a list of things that those of us with fibromyalgia would appreciate being given for Christmas. These are items that truly would make our lives easier and a bit more fun.
General items or services
Pajamas: Anything soft and tagless. Something that looks less like pj’s and more like loungewear. Amazon has some great choices. I know a lot of us women live in our pj’s, so it’s super-important that they be soft and comfortable.
The world's first ME/CFS activity study using heart rate monitors to track safe activity levels is taking place in Adelaide. This is an exciting opportunity to get some objective measurement, through heart rate, of how our bodies cope when we are physically active.
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 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, you might like to be part of this innovative study. For further information, 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.
According to the OMF, the center is focused on investigating the molecular basis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as well as developing new diagnostics and treatments for the conditions. Its initial projects involve sequencing single T cells to understand the immunological basis of ME/CFS; analyzing sets of genomic and other omics data to define patient subgroups, uncover disease biomarkers, and identify potential drug targets; and developing a blood-based ME/CFS diagnostic that can also be used as a reporter in drug screening.
Santiago, known for her fiery and impassioned interpellations at the Senate and funny pickup lines in speeches, spent much of her life in public service. She died at the age of 71 on September 29, 2016.
Ignore it, and it'll go away—the approach many of us take to medical symptoms, nascent ailments, and the strange dotty rashes we find all over our extremities. It's fairly obvious that this is not the best approach to take. If you think something's wrong, get it checked out—it could be the difference between a speedy recovery and something much worse. Of course, this is one of the reasons lots of us choose to do nothing: Denial is easier than acceptance.
"To have to endure the symptoms [while also not knowing what illness] they may have definitely can come under 'ignorance is bliss,'" explains Dr. Julie Scheiner, a psychologist who specializes in behavioral therapy. "People are frightened of the things they don't understand, so ignoring symptoms may be easier to deal with than potentially having to grieve for something that may be worse to come. It’s a defense mechanism."
I spoke to four people who did exactly that, before being diagnosed with serious illnesses.
Max Tuck, Chronic Fatigue Syndrome and Epstein Barr Virus
Why, oh why, did I ignore my grinding exhaustion? I used to ask myself often. That’s what you do when you get diagnosed with an illness that alters life as you know it. For me, it was because I was busy—busy running the rat race. There wasn’t time to be tired. So I kept going, even though my body was saying otherwise.