PO Box 322,
South Australia 5092
1300 128 339
Monday - Friday,
10am - 4pm
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.
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.
ME/CFS South Australia Inc wishes to thank Eco Pest Control for its support of the Society.
An 'amazing' 6-year-old has been nominated as a CheshireLive COVID Hero for the help he gives his mum.
Oliver Ridley from Ellesmere Port was nominated as a COVID Hero by his mum, Millie Ridley, and his nanny, Sandra, for the help he gives Millie, who suffers with Fibromyalgia, Myalgic Encephalomyelitis, Arthritis and other conditions.
As well as helping his mum with her conditions, Oliver also 'took it in his stride' when an ambulance was called for his mum after she was poorly with coronavirus. He had also tested positive, but did not show any symptoms.
The nomination comes after CheshireLive teamed up with Amazon to recognise the Covid Heroes in our communities to celebrate the people who stepped up when we needed them most.
Now, Millie and his nanny, Sandra, have spoken to CheshireLive to recognise Oliver, who has been 'absolute angel' for all the help he's given his mum.
Before COVID-19, some members of our Australian community have been living with several health issues that do not allow them to leave their houses or their beds. They have reported the existence of many problems when trying to access care and the medical system. They argue that many other services and opportunities easily provided to other Australians have been extremely difficult to access for them: “I feel like we're just invisible. Like this problem isn't even on anybody's radar because nobody knows we exist.” - Ricky Buchanan.
Ricky Buchanan is the author of the report “Just Invisible: Medical Access Issues for Homebound/Bedridden Persons”. This report was a catalyst for developing and funding this Caring Futures Institute (CFI) research project: ‘Making the invisible visible: investigating the views and experiences of frail, homebound and bedridden people’. The CFI study is investigating consumers’ lived experiences and insights about the above-mentioned issues, as well as documenting potential healthcare disparities, social exclusion, and marginalisation. ‘Making the invisible visible’ is an important first step to tackle these types of reported problems:
• Reduction in overall health (frailty and increase in morbidity and mortality).
• Inability to recover from minor injuries or illnesses.
• Social isolation – “life becomes smaller”.
• Mental health decline.
• Episodic conditions feeding a health deterioration cycle.
• Diminished capacity to reach out to people, to work, to study, to participate in community and family life.
Dr Maria Alejandra Pinero de Plaza is the lead investigator of this project, which involves a multidisciplinary group of investigators: Dr Michael Lawless, Dr Mandy Archibald, Ms Penelope McMillan, Ms Alexandra Mudd, and Professor Alison Kitson. Ms Penelope McMillan (Chair, ME/CFS South Australia and a Director of ME/CFS Australia) is involved in this study as a consumer co-researcher, at peer level with the Flinders researchers. She shares an interest in further describing this population; particularly, those who are living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (includes CFS, ME or ME/CFS diagnoses), which has been defined as a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastrointestinal, immune, endocrine and cardiac systems. It impacts the mobility, frailty levels and healthy aging of many Australians.
Identifying the circumstances and experiences that this self-described invisible population is facing is important. Researchers from the CFI believe that working in collaboration with people from these communities will create avenues to respond to their needs with evidence-based and innovative consumer-centred solutions.
An online survey is available for one month, from this article’s publication, to capture people’s views and experiences in relation to the topic:
The survey is exploring the different social and health issues that people, particularly those who are frail, homebound, and bedridden, are experiencing in Australia.
The survey will give homebound and bedridden participants the opportunity to provide a photograph of something that represents their lived experience alongside a written description.
This information will be used to create a fully anonymous socio-scientific exhibition of posters to be rotated within different museums, social and community locations. The exhibition will be also be posted in an online gallery on the ME/CFS South Australia website and the CFI. Dr Pinero de Plaza was awarded a CFI accelerator grant to undertake this project and translate the findings of this study into a socio-scientific exhibition (posters), which will present better evidence of what it means to be frail and/or eventually become a homebound or bedridden person in Australia.
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.
Sixteen years after she published her debut, Jonathan Strange and Mr Norrell, Susanna Clarke has made the shortlist for the Costa book awards for her second novel, the long-awaited Piranesi.
The Costas recognise the “most enjoyable” books across five categories, with 708 books submitted this year. Piranesi, the fantastical story of a man who lives in a house in which an ocean is imprisoned, was described by the judges of the £5,000 Costa best novel award as “magnificently imagined”. Clarke, who was diagnosed with chronic fatigue syndrome after publication of the bestselling fantasy Jonathan Strange, said she was “so pleased” to make the Costa lineup.
“It’s a book that I really didn’t know whether I could write or not. There were, I suppose, a lot of things against it, against the likelihood of it ever being written – after such a long illness, I really didn’t know whether I could do this,” she said. “And when I had written it, it seemed like such a strange and personal book I wasn’t quite sure what I’d written. So for it to be recognised is particularly special, particularly wonderful.”
COVID-19 was initially thought to be a disease that was serious for the elderly and people with preexisting conditions. A potentially tough, but temporary respiratory illness for everyone else. But now, eight months into the pandemic, younger patients who have had relatively mild cases of COVID, are showing up in doctors offices and emergency rooms with mysterious and debilitating symptoms. It's not unusual for viruses to cause aftereffects, but as you'll hear tonight, doctors tell us they've never seen anything like this. While researchers around the world are scrambling to figure out what's happening, Mount Sinai Hospital here in New York opened one of the first centers to study and treat people with what they're calling "Post-acute COVID Syndrome." The patients we met have a less clinical term - they call themselves "long-haulers."
Sadie Nagamootoo: It's like a, a like a viral tornado (SIGH) that goes in you and kind of just messes you up and then-- like, it kind of leaves. But leaves something behind.
Anderson Cooper: It leaves the rubble that a tornado leaves behind--
Sadie Nagamootoo: The rubble, yeah. It leaves the damage behind.
Low-dose naltrexone (LDN) is finally getting some recognition from the medical community as a treatment for chronic pain. The December edition of the Journal of the American Dental Association (JADA) features a cover story on the use of LDN by dentists – not to manage short term pain during dental procedures – but to treat chronic oral and facial pain conditions such as temporomandibular joint disorder (TMJ).
“Low-dose naltrexone provides an alternative in medical management of chronic pain disorders as a novel anti-inflammatory and immunomodulator. It can offer additional management options, as orofacial pain conditions share characteristics with other chronic pain disorders,” wrote Elizabeth Hatfield, DDS, corresponding author and clinical lecturer at the University of Michigan School of Dentistry.
Few mainstream medical organizations have recognized the benefits of naltrexone as a pain reliever, largely because the drug is only approved by the Food and Drug Administration as a treatment for substance abuse. In 50mg doses, naltrexone blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol.
Call for Research Participants
Aged between 18 and 65
We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study investigating 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:
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 30 November 2020
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.
"One of them is that it's just a post-viral syndrome where somehow the immune system is getting modulated. One of the theories about brain fog, so the old term was chronic fatigue syndrome, but the newer term is myalgic encephalomyelitis," Rogg said. "One of the theories with that is that it somehow reactivates old Epstein-Barr virus infections and causes sort of this decreased memory and increased forgetfulness and ability to formulate, but the unifying thing is it's thought to somehow modulate a person's immune system."
Participate in an online survey about wellbeing or take part in a study of an online program that will help you build skills to be kinder to yourself. You will receive a voucher for taking part.
The online intervention and wellbeing surveys for young people with chronic conditions are both open for recruitment. Conditions include, e.g. asthma, allergy, arthritis, burns, cancer, diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, diabetes, pots syndrome, IBC/crohns/ulcerative colitis, multiple sclerosis, cystic fibrosis.
UPLIFT Online Well-Being Program for Young People with Chronic Illness
In this project we want to find out whether an online program improves wellbeing for teens and young adults with a chronic physical illness. If you complete all of the surveys in this study, you will receive two $20 vouchers (your choice of JBHifi or BigW).
Living with an ongoing illness can be very hard. The UPLIFT program provides strategies that people can use to cope with some of these challenges and develop resilience. By participating in this research, you will help us to understand whether this program is helpful for young people with a chronic illness.
We are inviting you to take part in this study if you are:
Aged 16-25 years
Live in Australia
Currently have a diagnosed chronic physical illness, or are in remission
This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!
#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:
Provide set-aside funding for ME to accelerate research
Organize meeting of ME experts to reach consensus on patient selection methods and criteria
Fund the identification and validation of biomarkers
Fund a clinical trials network and treatment trials
Address disease stigma and lack of clinicians impeding research
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.
Emeritus Professor Warren Tate's 2020 BHRC Lecture, entitled "Understanding the biological basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and its sudden increase in public profile with COVID-19".
Open Medicine Foundation (OMF) is thrilled to announce an anonymous, $1,000,000 grant to fund a collaborative investigation of the relationship between COVID-19 and the possible trajectory to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS.) The study will be conducted at the internationally-based OMF-established Collaborative Research Centers.
In early 2020, OMF scientific leadership anticipated that many COVID-19 patients were at high risk for developing ME/CFS, offering an unprecedented opportunity to understand how ME/CFS develops from a genomic, proteomic, metabolic and immunologic perspective.
With this initial $1 Million investment, we seek to study the difference between COVID-19 positive patients that return to good health and those that end up with ME/CFS, which could, in turn, reveal biomarkers and treatment interventions.