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.
Disclaimer
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.
Support
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Saturday 8 April 2017
1:30pm Speaker: David Mitchell
Topic:
What do genes, hormones and supplement insufficiencies have to do with ME/CFS?
Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek
Topic: Brain structural changes in ME/CFS – recent research findings
Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017
Saturday 18 November 2017 Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
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.
The idea of being a parent has always felt like some far-off part of my life’s plan — something I would eventually get to after some maturing and the shedding of my bachelorhood. As I became an adult, I figured it would always be an option. I certainly never thought that I would have the choice taken from me.
Six years ago, I was diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome, a multi-system disease that severely inhibits metabolic features in the body. The disease eventually left me unable to speak or eat solid food for more than a year.
At some point, between the onset of my illness and when I became severely sick and bedridden, I realized I wanted to have a child. Almost simultaneously, I realized I couldn’t.
Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.
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.
Melissa Swanson has joined the campaign to help bring the independent film Invisible to the big screen. As part of her commitment, Melissa interviewed filmmaker Nick Demos and shares that interview with us here.
Desperate to help his mother fight her symptoms, filmmaker Nick Demos meets a young athlete, a human rights advocate, and a struggling migrant - all in different stages of the often-debilitating pain syndrome, Fibromyalgia.
Invisible tells the often ignored stories of people suffering from a syndrome that many still believe doesn’t exist. The film also exposes the fight with insurance and drug companies for proper treatment and how access to holistic health and education is determined by class and money. Through his journey to understand Fibromyalgia better as a way of helping his mother better, filmmaker Nick Demos finally addresses his own suspicions about having the syndrome himself.
What was your inspiration for making this film?
The film’s original inspiration came from Megan Densmore, one of our subjects in the film. She has had Fibromyalgia since she was a teen and had the idea to create the film. She is a close friend to our lead producer, Pallavi, who loved the idea and then approached me. What Pallavi didn’t know is that my mother suffers with Fibromyalgia. I was immediately interested in directing the project.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 24 July 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.
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.
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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.
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. [08] 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.
Kind regards,
Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia
Fibromyalgia patients may have different cerebral blood flow parameters compared with the general population, according to a recent study. Researchers say these changes could be linked to clinical pain parameters and emotional factors.
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.
Another Potential Fibromyalgia Drug Bites the Dust
By Donna Gregory Burch
July 18, 2017
Copyright 2016 National Pain Report
The fibromyalgia community suffered yet another disappointment earlier this month when drugmaker Daiichi Sankyo announced mirogabalin, a potential new treatment, failed to meet its pain-reducing goals in clinical trials.
Last year, I reported that three potential new fibromyalgia drugs were heading to clinical trials. Two of those contenders – mirogabalin and TNX-102, a sublingual form of cyclobenzaprine, have now been shown to be ineffective for fibromyalgia. The third drug – an antiviral/anti-inflammatory combo named IMC-1 – will likely head to trial later this year.
Mirogabalin is a cousin of Lyrica, the first drug ever approved to treat fibromyalgia, but it was supposed to work better than Lyrica with fewer side effects. Unfortunately, mirogabalin didn’t live up to those claims.
When I first met Vicki, I connected with her right away. Comfortable in her own skin, I knew that if it weren’t for our professional relationship, we might have been friends. She was struggling when I met her, taking several medications and strapped financially as she had no decent health insurance to cover her pre-existing conditions after being laid off. Despite her serious medical conditions, she was very positive with a great attitude.
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Vicki began reading about cannabis as a natural option to treat her pain and came to my office to learn more. She has found that THC-rich medicine taken in small doses (one to two puffs) smoked in a joint two or three times a day eases her pain and insomnia. It also alleviates the anxiety that is so often associated with these medical conditions. Vicki states that she’s a responsible user and knows what affects her mind and body. She does not drive after she smokes and, while she reports sometimes feeling euphoria, she most often feels relaxed and is able to sleep.
Vicki’s former life of pain prohibited her from really participating in activities with her friends and family. Before cannabis, if she didn’t sleep or had too much pain, she would often stay at home to “ride it out,” and then feel too exhausted to leave. Her friends and family were frustrated with her, insisting that she didn’t take care of herself. “This is what fibromyalgia does. This is how chronic fatigue affects me,” she’d insist. “I have to stay home and take care of myself.” Today, if she feels pain or discomfort, she has a very effective and non-toxic way to treat it. With medical cannabis, she can actively participate in her life.
The Society’s Constitution has been updated:
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