Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
ME/CFS South Australia 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 South Australia 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 South Australia Inc wishes to thank Eco Pest Control for its support of the Society.
Saturday 22 June 2019
1:30pm Speaker: Dr. Bruce Wauchope Topic: Where we are at: an update on progress at the clinic & links with Open Medicine Foundation and others nationally Venue: Parkside Baptist Church, 100 Young Street, Parkside
Saturday 7 September 2019 Annual General Meeting
1:30pm Speaker: Occupational Therapist Andrea Parker Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS Venue: Sophia House, 225 Cross Road, Cumberland Park
Saturday 23 November 2019
1:30pm Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute) Topic: [to be confirmed] Venue: Sophia House, 225 Cross Road, Cumberland Park
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
Call for Research Participants
Aged between 18 and 65
years
We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.
As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.
Participation in this study is entirely voluntary.
To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 20 August 2019
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
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
This was Yasmin Crawford's final project for her masters in photography at Falmouth University. The project focused on discovering the research behind the neuroimmune condition myalgic encephalomyelitis, also known as chronic fatigue syndrome.
"Through exploration of perspective, complexities, and scientific multidisciplinary collaborations, I create imagery that explains, reveals and connects us consciously to the ambiguous and unknown."
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 South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 19 August 2019
ME/CFS South Australia Inc 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 South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
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.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
THE hamster wheel of life – work, eat, sleep, repeat – can leave many people feeling as though they're constantly exhausted.
And according to a recent study, the average Brit spends more than seven-and-a-half years of their lifetime feeling overtired.
However, there's a chance that this tiredness could be a sign of a bigger problem, with extreme exhaustion not just being down to reducing stress at work or getting those much-needed zzzzzs in.
It could be down to chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME), which is a complex disorder characterised by ongoing, debilitating tiredness.
Here, Dr Sarah Jarvis, GP and clinical director of Patient.info, talks The Sun through the main signs your exhaustion could actually be a symptom of chronic fatigue syndrome - as experts warn 90 per cent of cases go undiagnosed.
SERIOUS illness is not stopping a determined budding barrister who hopes to make the world a better place for those with disabilities.
Rhys Brown has severe epilepsy and myalgic encepalomyelitis – also known as chronic fatigue syndrome – but refuses to let the conditions destroy his dream.
The 25-year-old from Warwick is unable to work but is set on helping those with disabilities in his own way.
He has been approved to study law at Birkbeck College in London, where he hopes to train to become a barrister so he can go on to represent those treated unfairly due to illness.
Netflix is being sued for defamation, fraud and invasion of privacy by subjects of its 2018 unscripted series Afflicted about people with chronic illnesses.
The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality television program that questioned the existence of their chronic illnesses and portrayed Plaintiffs as lazy, crazy, hypochondriacs and/or malingerers who were deserving of scorn and who in fact have received scorn and abuse because of Defendants’ cruel and duplicitous actions.”
PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6
----------
We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.
We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
WELLINGTON, New Zealand — Scientists in New Zealand said Wednesday they’ve found fossilized bones from an extinct monster penguin that was about the size of an adult human and swam the oceans some 60 million years ago.
...
The monster penguin’s bones, from its legs and feet, were found by amateur enthusiast Leigh Love about 18 months ago in the Waipara River bed near the South Island city of Christchurch.
...
Mr. Love said his passion for collecting fossils began about 14 years ago after chronic fatigue syndrome prevented him from working for several years.
“It inspires me to go out and look for more,” he said.
We Still Don’t Know What Causes Fibromyalgia—But Could the Answer Lie in Your Stomach?
A new study found a link between the bacteria that populate the digestive tract (called the gut microbiome) and this chronic pain condition. Here’s what that could mean.
For the more than 10 million Americans who have fibromyalgia, a new study from Canada provides valuable information about this often-mystifying condition whose cause is still mostly undetermined.
Fibromyalgia causes widespread body pain, sleep problems, and fatigue, among other symptoms. To wit, it can take months or several years to diagnose, contributing to the emotional and mental distress that is also common with this condition.
But the new research, published in the journal PAIN, is the first of its kind to investigate variations in the makeup of the gut —basically, the trillion or so bacteria that inhabit your digestive system—between patients with fibromyalgia and healthy control participants. Could these bacteria differences hold the clues to why people get fibromyalgia in the first place? Here’s what you should know.
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.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
Anna Kerr has myalgic encephalomyelitis, a
highly-stigmatised and misunderstood condition
also known as chronic fatigue syndrome.
She spends more than 20 hours a day in bed.
(Photo Credit: Eddie Jim.)
Anna spends 22 hours a day in bed. But experts hope they're close to a cure
Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed.
Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness and heart palpitations.
Then came the endless and unexplained bouts of illness, like a re-occurring flu or virus that she couldn't shake, compounded by a sensitivity to bright light and sound. Some episodes were so severe she was bedridden.
Ms Kerr has myalgic encephalomyelitis (ME), a profoundly stigmatised and widely misunderstood condition, also known as chronic fatigue syndrome (CFS).
"I literally dropped out of life," Ms Kerr said. "I couldn't stand up. I couldn't cook. I couldn't put washing on. I couldn't even be with my kids very much because I was just so ill. It was devastating."
The complex condition affects up to 250,000 people in Australia, about a quarter of whom are so unwell they are confined to their beds and homes. But there is new hope for sufferers with the creation of Australia’s first biobank and registry.
‘One by one I lost pieces of my identity. Running,
swimming laps, riding my bike, reading books.
Friendships, travel, career.The idea of having children.
I felt as though I was disappearing.’
(Photograph: Philippe Lopez/AFP/Getty Images)
When life shattered all my dreams, the magic of cinema held me aloft
After the grief of chronic illness, I’d given up on love and joy. But attending film festivals lit a bright new path back to myself.
I was five years old when I fell in love with cinema. We were watching Pinocchio in an old theatre, crowded and noisy with parents and kids. I had a Heart ice-cream clenched in one hand – a grown-up’s ice-cream, a special treat. As the story unfolded, I felt sad, then scared, happy. So many feelings! The emotions were hard, and also thrilling. It was magical.
I was an aspiring film-maker in the early 90s when I first attended Sydney film festival. Initially, it was just one more thing to wedge into the chaos of my life. End-of-semester deadlines were looming and sometimes I’d dash to a session, then rush back to uni to edit a film. But I loved it – being in a crowd of fellow cinephiles, the applause at the end of films, the excitement of discovery. Days spent throwing off your life, forgetting everything and seeing the world through different eyes.
Then 16 years ago I was forced to slow down. I started experiencing crushing fatigue and constant viruses. I’d wake up each morning exhausted and in pain, like I’d run a marathon in my sleep. My legs felt like I was wading through honey. Sometimes I had trouble following conversations and instructions or absorbing what I read.
Eventually I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and turned to face unrelenting indifference and disbelief. It’s a serious condition – 25% of patients are housebound or bedbound – but there’s so much stigma and dismissal.
Living with chronic illness has “not been a linear path” but Hannah Shewan Stevens is learning to embrace being “queer and beautifully scarred.”
After being diagnosed with fibromyalgia and scleroderma, a rare autoimmune condition at just 14, Stevens’ relationship with her body broke down.
“At 14 I was dealing with scarring which seemed to be never-ending, which had a huge impact on my confidence as a teenager,” she tells PinkNews.
“I basically didn’t look in a mirror for five years or so, I just refused to acknowledge the condition existed which was both detrimental to my mental and physical health.”
I’ve been living with chronic pain for more than a decade.
It began in 2009 with nerve damage after emergency groin surgery. Four years later, I fell and hit my head. That fall led to a constant headache, a whistling sound in my ear, back and hip pain, tingling and numbness in my hands and feet, electrical shocks in my legs, muscle soreness, and random pain and burning sensations throughout my body. Years later, after numerous doctor visits and tests, I was diagnosed with fibromyalgia, tinnitus, neuropathy, chronic fatigue, and depression.
I had a hard time adjusting to the pain. I let my symptoms control me. My quality of life suffered along with my physical conditioning.
Here are five things I wish I had known earlier in this journey, much of which I learned while attending a three-week outpatient program at the Mayo Clinic Pain Rehabilitation Center in 2012 and again in 2018. Each of these would have made my journey easier and might help others living with chronic pain.
Your support can help improve the lives of people suffering with ME/CFS
Can You Help?
Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?
On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.
"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.
Tethered is a play that explores one of the most commonly used pieces of technology in 2019: VR. However, rather than exploring its most familiar employment – entertainment at its most basic level – the cast of the production investigate the tech for its medical applications. Through physical theatre, the cast of Contents May Differ demonstrate how through the use of VR, the character of Alice can dance again, despite being diagnosed with Chronic Fatigue Syndrome.
Directed by Michael Entwistle, the show is a highly physical piece that explores the strong theme of identity. We are presented with five characters whose lives are all interwoven, resulting in a seismic shift in the group dynamic if someone’s life changes. Alice (Emily Flo Carter), a dancer, and her new fiancé Kevin (Daniel Chrisostomou) kick off their engagement with a party, inviting Alice’s brother Jamie (Mitch Howell), Jamie’s girlfriend Katie (Elizabeth Fitzpatrick) and old friend Jess (Amelie Leroy).
The audience is quick to learn that something is not quite right with Alice, as she expresses symptoms of exhaustion and achiness. The character’s identity is ripped away from her when, with the help of junior doctor Katie, she is diagnosed with Chronic Fatigue Syndrome. As Alice starts to deteriorate, her brother Jamie buys her a VR headset to allow her mind to be elsewhere, not focusing on the pain.
The visualisation of the VR world is the strongest element of the performance. When Alice puts the headset on, the audience is transported to a dreamlike world, accompanied by LED lighting and haunting music. The cast members carry out physical sequences around Alice, equipped with masks and white gloves, the latter drawing parallels to a real VR experience. These sequences draw on the play’s main theme, showing that when the protagonist is using the headset she is nameless and faceless, not Alice with a disability; she can be whoever she wants to be.
Entwistle has chosen to have the production staged in-the-round, which lends itself to the constant changing of props across the minimal set. The supporting cast members do well to keep the play flowing through the set changes, the fluid motion only highlighting Alice’s immobility more.
