Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
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 24 March 2018
1:30pm Speaker:Carol Hunter of Rose Park Psychology. Topic: Coping strategies for patients, carers and families living with ME/CFS.
Saturday 30 June 2018
1:30pm Speaker:Diana Bordean, a physiotherapist who helps people with Fibromyalgia and ME/CFS. Topic: What can your physiotherapist do for you? Plus... ME/CFS Life Hacks. Bring along your favourite disability aid, piece of equipment or device. A Travelscoot and electric wheelchair will be available on the day to try out.
Saturday 11 August 2018 Annual General Meeting
1:30pm Speaker: Dr Mona Kaur Topic: Gut Health & ME/CFS New Venue: SACOSS, 47 King William Rd, Unley
Saturday 24 November 2018
1:30pm Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
Fibromyalgia is considered to mostly affect women, with estimates showing they account for more than 90% of reported cases.
However, according to a new study, this percentage is not supported by unbiased studies, and when gender bias is eliminated, the proportion of women with fibromyalgia is lowered to 60%.
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
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.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 15 October 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.
Karambu Muthaura, 38, lives a life punctuated by unpredictable spasms and chronic fatigue due to a condition called fibromyalgia. She shares her experience with Soni Kanake.
“My name is Karambu Muthaura, a project manager and mum of two – Cindy, 13, and Mo, four and a half.
“Life was one big party until around 2006 when I started getting migraines and unexplained fatigue. I had always enjoyed great health, then one day I started getting sickly. Things have not been the same since.”
...
“The condition was diagnosed as fibromyalgia, which causes the nerves to send wrong and exaggerated pain signals so in defense, the muscles contract leading to lots of spasms. As a result, I suffer from generalised body pain though it also comes with specific pain points for instance the trapezius (either of a pair of large triangular muscles extending over the back of the neck and shoulders and moving the head and shoulder blade).”
Arguably, it was the only thing the late Terry Gathercole, Olympic silver medallist, Australian swim coach of the year and president of Australian Swimming, got half-wrong when he coached former 100m breaststroke world champion Linley Frame.
“At the end of the day, swimming won’t pay your bills,” he once had told her.
His warning was intended to ensure that Frame never became a blinkered swimmer, that she was always well aware there was life outside the pool. So while Mr Gathercole (no one ever addressed him any other way, such was the respect he commanded) would get a wry smile out of the fact that Frame works for Swimming Australia, it’s the new role she now fills that would have him chuckling:
“Athlete Wellbeing and Engagement Manager”.
If that title leaves you just a little confused, her job is to ensure that today’s generation of swimmers do take off the blinkers, look around them and realise that there is so much more to life than swimming. The lesson that her coach had taught her has now become, as of the past dozen days, her life’s work.
Frame herself is still working out how that job title will convert to reality but, after working on the national roll-out of Beyond the Black Line, a joint wellbeing project involving the national body, the state associations and the Australian Swimmers Association, she has a sense of how elite swimmers can achieve life balance. It helps, too, that she actually feels current as a swimmer.
She might have quit the sport in 1995 as a 24-year-old, driven into retirement first by glandular fever and then by chronic fatigue syndrome, but she returned to it as a 38-year-old, not just to swim at Masters level by to contest the Open nationals against swimmers young enough to be her daughter.
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
Blues musician Peter Gelling
Bluesman with a passion for sharing his talent
Peter John Gelling
(17 February 1960 to 28 September 2018)
Blues musician, music teacher, song-writer, composer and author Peter Gelling died peacefully at his home in North Watson on 28 September. Peter’s life was similar to many a bluesman in that he went through extremely hard times and struggled with some savage demons. A 12-step rehab program that he entered in his late teens, and music, were his saviours.
He wrote more than 130 music instruction books and released five critically acclaimed albums, including the Aria-nominated Bluestime and multi-award winning Fortune. In 2003, he won the MusicOz award in the Blues and Roots category for his song ‘If it wasn’t for the Blues’. His blues guitar manuals sold well, even in America, and his playing was described by ‘Rolling Stone’ magazine as ‘shimmering’.
Peter was born at Bulli, NSW, and came to Canberra with his parents in 1970. In his youth, he ‘went off the rails’, as he put it, and ‘ended up addicted to drugs and alcohol. Life was a nightmare’. He engaged in petty crime to feed his addictions but later became a model to others as to how an individual can turn their life around. His physical health had suffered, though, and in 1983 he was diagnosed with Chronic Fatigue Syndrome, something from which he never recovered. This and other ailments meant that he lived with pain. His amazing determination to live life as fully as possible, and to achieve so much, despite adversity, now brings tears to the eyes of his friends and loved ones.
The music never stops emerging from the hidden places right before our eyes.
I’m a teacher by day — a 10th grade English teacher at Bellefonte Area High School — and I have the pleasure of working with hundreds of really great kids every day, some of whom are musicians, and some of whom are in bands that gig in our area.
One of those bands is Sauce, a sweet five-piece improv band that is playing the 2nd annual Rowe’s Research Runners One Mile Walk/Run/Roll at the Pennsylvania Military Museum at 2 p.m. Oct. 20, with a rain date of Oct. 21. It’s a charity run designed to raise money for chronic fatigue syndrome, Dysautonomia and related illnesses.
“This fundraiser is a great opportunity to give back to the community,” said Sauce singer and piano player Halle Mitchell, “and we really support the cause.”
The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.
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.
When I started looking at a way to raise awareness for dysautonomia this month, I realized it was in 2015 that I wrote about dysautonomia and fibromyalgia. So, I thought it was time for an update.
What is dysautonomia?
Dysautonomia is a term used to describe a disruption in the way our autonomic nervous system regulates, communicates, and adjusts our body functions so we maintain balance.
As reported in the above-mentioned article, the autonomic nervous system (ANS) consists of two branches: the sympathetic and the parasympathetic.
The sympathetic nervous system prepares our body for fight or flight in stressful situations and sometimes seems to give us superhuman powers in fearful or dangerous situations. Certain functions take place, like the release of adrenaline, which cause other things such as an increase in our heart rate so that more oxygen is delivered to our muscles when it’s needed.
It is the parasympathetic arm of our ANS that normalizes things after a threat is gone. Both branches of the autonomic nervous system work “automatically” to provide the body balance and well-being, referred to as homeostasis.
Combining two imaging techniques allowed researchers, for the first time, to visualize widespread inflammation, specifically mediated via glial cells, in the brains of fibromyalgia (FM) patients.
“Finding objective neurochemical changes in the brains of patients with fibromyalgia should help reduce the persistent stigma that many patients face, often being told their symptoms are imaginary and there’s nothing really wrong with them,” Marco Loggia, PhD, a researcher at the Massachusetts General Hospital-based Martinos Center for Biomedical Imaging and the study’s co-lead author, said in a press release.
“We don’t have good treatment options for fibromyalgia, so identifying a potential treatment target could lead to the development of innovative, more effective therapies,” he said.
Two women are overcome with emotion as they
discuss how they got sick living in a
mold-infested apartment in Irvine in 2001.
(Photo: Los Angeles Times)
Netflix is televising prejudice against the chronically ill
I’ve watched my fellow patients with myalgic encephalomyelitis, also known as chronic fatigue syndrome, suffer and even die from the ignominy of a suspect disease. Patients often can’t get effective medical care, their disability insurance applications are rejected, their marriages are torn apart, they’re abandoned by their families, they end up in poverty and food insecurity, and sometimes they die, occasionally from the diseaseitself, moreoftenfrom suicide.
As terrible as this litany is, nothing has brought home to me the dangers of prejudice against those who are chronically ill like the new Netflix documentary series “Afflicted.”
The television show follows the lives of seven people with “bizarre” health problems, including ME/CFS and mold illness, diagnoses I share. As the series unfolds, the agenda becomes increasingly clear: to show that the primary cause of these diseases is psychological. In Episode 6, each participant is shown while their parents and partners speak: “I wonder, is he imagining this to the point that it becomes real?” “Is this in her head? Is it psychosomatic?” “Some of it’s in her mind, I guess.”
The patients are depicted as bleeding their loved ones dry of money and goodwill, as abandoning reputable doctors in favor of greedy quacks, and as being freaks utterly unlike normal healthy people.
When I finished watching the series, I feared for my fellow patients.
It seems that no matter what you do these days, someone out there, whether it be a stranger, an acquaintance or even yourself, feels the need to criticize something about you.
Regardless if you have 10 followers or a million on social media, that negativity will always be there - and for former Miss Universe Australia, Tegan Martin, she’s lived with the pressure of having to live up to everyone’s expectations, including her own.
Yes, she has an Instagram following of 120k. Yes, she’s in a happy relationship with fitness hunk Blake Worrall Thompson. Yes, she gets to travel the world for work, but irrespective of all this, her life hasn’t, and isn’t, as spick and span as it all looks like from the outside.
Rewind back to her teenage years, and life’s pressure took a major toll on her health.
“My chronic fatigue syndrome came on slowly in my late teens and it progressively got worse and worse,” the 26-year-old tells myBody+Soul.
This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.
This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.
The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.
We were having a case of déjà vu as we drove around the surprisingly large campus. Getting into the NIH to see Avindra Nath had been a nightmare. It turned out that the NIH would only allow the big van through one access point and we’d ended up mortifyingly late to our appointment. Now here we were in another big campus with what my partner felt were inadequate directions.
I thought Jarred and I had it going, though. He said he would meet us at the parking lot and let us through the gate, but there were lots of parking lots. Plus, because we couldn’t stop, we had to keep driving around the campus and hope we met up with him at the right parking lot at the right time. It did seem a little dicey but I was confident I’d figured it out.
My partner, though, wasn’t having it with the sketchy directions or the reliance on male directional genes. She could see it happening – we were going to be late again.
“Men,” she said, “how do you ever get anything done?”
As it turned out, Jarred and I were in sync: we both showed up at the gate at about the same time and he led us into his surprisingly large facility. Once again, we forgot to take pictures, but our timing couldn’t have been better; Younger had just wrapped up one of the most exciting studies in memory.
The aim of the CFS/ME Research Collaborative (CMRC) is to promote the discovery of the biological mechanisms that underpin CFS/ME, which will drive the development of targeted treatments. The ME Association is an active board member of the CMRC.
The 5th annual CMRC conference was held in Bristol on the 19th and 20th of September.
There was a very high turnout, which included researchers from the UK and overseas, health professionals, academics, students, people with ME/CFS and carers.
It was two days full of interesting talks, exciting new findings and a general sense of passion for biomedical research.
There was also lots of stimulating discussion and networking taking place among the professionals, as well as a chance for people with ME/CFS and carers to give feedback during workshops and to ask questions of the researchers.
More insight: A recipient of one of the MEA medical student bursaries provides his impression of the CMRC research conference 2018.
The resounding feel from this conference was a much greater sense of focus and direction. There seemed to be a tacit agreement among researchers that there exist multiple subgroups within the ME/CFS cohort, each with different pathologies, and a need for them to be identified and separated – in order to create more targeted diagnosis and treatments.
There was a wonderful metaphor used, referring to the subgroups as “different types of elephants” – ME/CFS being the elephant in the room – and that what works for one group will not necessarily work for another.
Click the image above to download our free report.
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
Belle & Sebastian leader Stuart Murdoch has been vocal about living with myalgic encephalomyelitis, more frequently called chronic fatigue syndrome. He was diagnosed more than two decades ago, before starting the band, and over the years he’s referenced it in both his music and in interviews. His latest spotlight on the disease comes from a CNN segment as part of Turning Points With Dr. Sanjay Gupta.
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 9 October 2018
Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.
What should be considered in the design of a clinic to treat complex health conditions?
We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.
This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.
While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.
We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.
As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.
Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.
For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
• Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues
Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.
When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!
What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.
Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?
Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.
Thank you in advance. If you need help please ask your carers to assist you.
Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team. South Australian ME/CFS/FMS Clinical & Research Collaboration c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com
