Mailing address:
PO Box 322,
Modbury North,
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.
The website you are currently visiting remains live as an historical document and is no longer being updated.
It is also accessible from the footer of our new website.
We are pleased to present our new website, with a huge shout-out and heartfelt thanks to Big Picture - The 'Give Back' Initiative.
This website was made possible through the generous support given by Quisk design and other partners in Big Picture - The 'Give Back' Initiative. Launched in 2012 by Quisk Design, each year Big Picture - The 'Give Back' Initiative provides gratis website design services to a South Australian charity. In 2019 ME/CFS SA was honoured to receive this award.
We are so grateful for their expertise, creativity and willingness to incorporate our ideas and requests. Words are insufficient to describe the level of generosity, support and patience we have received throughout the process of development.
Big Picture first meeting.
Retaining a valuable resource
The previous website has served our community for more than twenty years. It is a wonderful repository of material and will remain available as an important archive, accessible from the footer of our new website. Peter Scott has been our webmaster for all those years and will continue his important work on our new website.
Member Resources
Our new website includes a special member portal to make it easier for members to access our vast collection of resources, such as 20 years of Talking Point magazines, videos of our seminars, and more.
Contributors
The knowledge, skills and experience of our team of volunteers has been invaluable in completing this complex project.
ME/CFS South Australia is grateful to the many individuals and organisations from around the world who have given us permission to use their material on the pages of our website.
LOS ANGELES, Dec. 4, 2020 /PRNewswire/ -- Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.
"Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis," said Oved Amitay, CEO of Solve M.E. "Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population."
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.
Can COVID-19 morph into other serious health issues?
A team at Columbia University's Mailman School of Public Health is partnering with a chronic fatigue syndrome (CFS) organization to study COVID-19 and CFS.
For the condition previously called chronic fatigue syndrome (CFS), and now referred to as myalgic encephalomyelitis (ME), people suffering from the condition are marked by overwhelming fatigue as well as potentially other multi-system conditions that can be chronic in nature. The cause of ME is not truly understood and there are no definitive tests to diagnose it or therapies to treat it.
Mady Hornig, MA, MD, is an associate professor of epidemiology at Columbia University's Mailman School of Public Health, and she had COVID-19 earlier this year. She has had a continuation of symptoms and health issues several months after initially having a fever, and has been characterized as being a COVID-19 long-hauler.
These subset of patients report having a number of health problems after their initial bout with COVID-19 including a loss of taste and smell, severe fatigue, or neurological issues.
As with other viruses, there is a long-term concern with COVID-19 that some lingering health effects post virus might morph into more serious conditions. For example, Post Ebola Syndrome illustrates that some people who beat the virus end up having other health issues including eye problems up to blindness, neurological issues, as well as muscular and joint pain. The syndrome can be quite debilitating to the point of leaving people unable to work.
Hornig and her team have partnered with Solve ME, which is a non-profit organization dedicated to accelerating the discovery of treatments, expanding funding for cure research, and engaging the ME/CFS community in research, advocacy, and patient support.
A CARING brother is getting on his bike to raise money for his desperately ill sister.
Chris Rice has been left heartbroken by the deterioration in his sister Clare who is suffering from a severe chemical reaction allergy which has left her wasting away at home.
“Clare is currently suffering from severe Multiple Chemical Sensitivity (MCS),” said Chris.
“It’s an adverse physical reaction to low levels of many common chemicals, a chronic recurring disease caused by a person’s inability to tolerate an environmental chemical or class of foreign chemicals.
“These can include foods, solvents, perfumes, fuels, smoke, EMF, and any other chemicals in general.”
The 40-year-old mum of two’s condition is so severe she is effectively confined to her bedroom.
“She can only tolerate a handful of different foods which has caused her to lose a considerable amount of weight, leaving her even more unwell,” added Chris, from Church Hill.
With treatment only available privately, and with Clare also suffering from ME and fibromyalgia, Chris felt he had to something to help.
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 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:
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.
Role of mitochondria, oxidative stress and the response to antioxidants in myalgic encephalomyelitis/chronic fatigue syndrome: a possible approach to SARS-CoV-2 ‘long-haulers’?
A significant number of SARS-CoV-2 (COVID-19) pandemic patients have developed chronic symptoms lasting weeks or months which are very similar to those described for myalgic encephalomyelitis/chronic fatigue syndrome.
This paper reviews the current literature and understanding of the role that mitochondria, oxidative stress and antioxidants may play in the understanding of the pathophysiology and treatment of chronic fatigue.
It describes what is known about the dysfunctional pathways which can develop in mitochondria and their relationship to chronic fatigue.
It also reviews what is known about oxidative stress and how this can be related to the pathophysiology of fatigue, as well as examining the potential for specific therapy directed at mitochondria for the treatment of chronic fatigue in the form of antioxidants.
This review identifies areas which require urgent, further research in order to fully elucidate the clinical and therapeutic potential of these approaches.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 7 December 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.
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".
Online Wellbeing Survey For Chronically Ill Young People
7 March 2020
If you are a 16-25 year old Australian and living with a diagnosed chronic illness, researchers from Telethon Kids Institute and Curtin University want to hear from you.
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
Chronic Fatigue Syndrome
Symptoms Diagnosis Management
by Dr Rosamund Vallings Published by Calico Publishing, RRP $50.00, 1 February 2021
A fully revised edition of this internationally acclaimed book provides a timely review of Chronic Fatigue Syndrome, the impact of COVID, and the latest research into treatments.
Often known as ‘ME’, Chronic Fatigue Syndrome is notoriously difficult to diagnose and treat, yet its effects are profound, and often prolonged and debilitating.
Dr Vallings describes the process for accurate diagnosis, and clearly explains all aspects of the illness. In separate sections she provides useful strategies for dealing with specific symptoms, as well as positive suggestions on how to cope with the disorder on a daily basis.
In this fully revised edition, Dr Vallings updates the huge body of research into this condition and explains the science and current understanding of the illness. It is particularly pertinent with the emergence of COVID-19 and provides an important resource for ongoing management.
Carolyn Samson with son Robbie who
says CBD has transformed her quality
of life after suffering "relentless pain"
caused by Fibromyalgia.
(Image: Gordon Terris)
“IT’S life-changing,” is how Carolyn Samson describes CBD, the plant extract that she says has allowed her to become almost pain and pill free after taking 62 different drugs for a chronic condition.
The 40-year-old says that a high-strength tincture of the oil has almost entirely alleviated the relentless and excruciating pain of Fibromyalgia and says it’s her “biggest hope” that the Scottish Government will follow other countries including Australia and make it available on prescription.
Ms Samson, who lives in Edinburgh, was diagnosed with Fibromyalgia, a long-term condition that causes pain all over the body, at the age of 30 after first developing symptoms as a teenager.
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.
Some days Erika England can move houses, other days she can't move from the couch. She writes about how she lives with her fluctuating conditions.
As I enter my sister's house, a cloud of shame hangs over my head.
It feels like forever since I've last visited and I've missed her terribly. Happy to see me, she acts like no time has passed. She is perfect — immediately offers me the most comfortable chair and a hot water bottle for my pain.
I feel like a fraud for blaming my absence on my health.
Did I look too perky on social media recently? Do I look like I'm flaunting my medication when I take it at the dinner table?
As the minutes pass, I grow fatigued. I'd metaphorically scream my love for my family from my rooftops, but I can barely muster up adequate input to the conversation.
'My pain is real'
I have mixed chronic pain causing a grey-area disability.
Some days, I clean the house top to bottom. The next day I need my partner's help to put on my leggings.
When I say I can't do something, I often mean I'm technically able — it just causes several days of pain and fatigue.
My prolonged pain causes sensory and cognitive problems too. I randomly find noise intolerable, or my speech is jumbled up into word soup for a day.
Dr. Joe Feuerstein poses in an examination room in
Stamford Hospital's Center for Integrative Medicine
& Wellness, in Stamford, Conn. Nov. 20, 2020.
(Photo: Ned Gerard / Hearst Connecticut Media)
The long haul: Stamford Hospital unit serves patients still suffering weeks, even months, after contracting COVID
Outside of the post-coronavirus program, Brodsky specializes in treating chronic pain without the use of prescription medication. This approach translated easily into hospital’s COVID-19 treatment program, which attempts to address the virus from a holistic perspective.
“Therapies include non-opioid pain management with trigger-point injections for myofascial pain and acupuncture, nutrition approaches such as anti-inflammatory diet, mind-body stress reduction techniques, and lifestyle treatments such as exercise and sleep recommendations,” said Brodsky.
Stamford Health announced the coronavirus care program in late August, after Brodsky read the latest report from the Centers for Disease Control. In it, the public health organization “described how COVID-19 can result in prolonged illness even among adults without underlying chronic medical illness,” something that moved the doctor to action.
