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.
SOCIETY SEMINARS FOR 2020
We are disappointed to say that due to COVID-19 and the need to self-isolate, we are unable to offer seminars until it becomes safe for our community to gather together.
We are currently looking at alternative ways of connecting within our community.
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.
I see people out running and feel a twinge of jealousy. They don’t know how lucky they are, to feel the freedom and exhilaration. That used to be me. I especially loved running in the rain, the water refreshing and cooling. I dream that one day I’ll run again.
In February 2018, I was diagnosed with Chronic Fatigue Syndrome (hate that name) or ME as it’s also known, which stands for myalgic encephalomyelitis. It’s a multi-complex neurological disease.
It’s debilitating, unpredictable, and affects 265,000 people in the UK at a cost of more than £3.3bn to the economy, and yet little seems to be known about this life-changing condition, and a scant amount of money is invested in to 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.
What you should know: On Sunday, Autostraddle senior writer Heather Hogan posted an update on Facebook about her recovery from COVID-19. She’s on her 10th week of symptoms, and she shared one of the most debilitating right now is post-viral fatigue syndrome (PVFS), the twin of post-exertional malaise people with ME/CFS experience.
This fatigue I’m talking about, which isn’t just feeling tired or sleepy, but like there’s no bones in my body and gravity is pushing down extra hard on me, to the point that I can’t lift my arms above my head. — Heather Hogan
I'm entering week ten of COVID symptoms. My first few weeks played out in the mild respiratory way, which was mild only…
The Frontlines: COVID-19 causes a wide range of symptoms, and lingering post-viral fatigue seems to be another among those who have more mild cases of the virus. This type of fatigue, which most often occurs after exerting any kind of energy (as little as eating a bowl of oatmeal), is also a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
This video is from the project 'Dialogues from a Neglected Illness’ - supported by a Wellcome Public Engagement Fund Award 2018 / 21. The project addresses different aspects of ME/CFS and includes interviews and input from doctors, researchers, patients, carers and advocates.
Produced by Natalie Boulton, with cameraman and editor Josh Biggs.
Editor’s note: Do you feel like some people treat you differently because you have fibromyalgia? And if you take an opioid medication to help ease your pain, do you feel like people are judging you?
Researchers Drs. Andrea Pfalzgraf and Kim Jones are looking into whether people with fibromyalgia feel invalidated or stigmatized, and if so, how that is affecting their lives. If you have fibromyalgia, you can help them by filling out their survey and sharing your experiences.
Have you experienced stigma related to having Fibromyalgia?
The purpose of this study is to gather information from adults who have been diagnosed with fibromyalgia about the following:
Perceptions of Invalidation
Perceptions of Opioid-Related Stigma
This study involves completing a one-time, online survey which should take about 30 minutes. Please note the survey is completely confidential and no personal identification of your information can be made. Your participation is essential to understand the impact of invalidation and stigma on people with fibromyalgia, particularly in relationship to using opioid pain medications. Your input will provide valuable information which will enhance scientific literature and may ultimately help improve patient care and treatment outcomes.
If you have any questions regarding this survey, please contact the Principal Investigator, Andrea R. Pfalzgraf, MPH, PhD at email@example.com.
Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.
A PAIR of inspirational Gwent women have raised more than £1,000 for the NHS – £900 more than their initial target – by shaving their heads.
Catherine Norris from Abertillery and Barbara Williams from Cwm, who both suffer with fibromyalgia – a condition which causes pain all over the body – explained how they couldn’t do anything rigorous, but were committed to doing something for the NHS during the pandemic.
“I put on Facebook that I was going to brave the shave and Catherine said she’d join me,” Mrs Williams said. “My husband thought I was mad, but I wanted to do something to contribute and it dawned on me this was the best way.”
After her post was shared around social media, Mrs Williams said she was astonished to see the money rise so quickly.
To feel pain more intensely than most, where scraping a knee feels like you have been hit by a sledgehammer, is something Laura Litaba has had to live with.
Although she was always a sickly baby, and even though throughout her school-going years she had incessant back pains and headaches, Laura didn’t think that her health could get any worse.
But it did. At least a few decibels of pain higher when in 2011 she began experiencing splitting headaches, and no painkiller could take away the pain.
“Sometimes I would take more than the recommended dosage,” she says.
While between migranes, she decided to see a specialist who would hopefully tell her why she couldn’t get a reprieve from the pain in her head.
But the neurologist told her he couldn’t find a thing wrong with her head. And so, defeated, Laura trudged back home.
Pretty soon though, the pain began manifesting in other parts of her body.
“I had back pains, chest pains and fatigue that I couldn’t explain away. I could sleep for more than 12 hours but still wake up very tired,” she says.
Just as she had through her childhood, she decided to grit through her pain and live life, at least as much as she could and as pain-free as she could manage.
She even joined university where her musical gift shone brightly. She was determined to live fully through the pain. But in 2016, things began falling apart.
“I was just back in the country after participating in a music concert and my body was aching all over. I brushed it off thinking that it was due to the travel and had probably picked up a bug. But a visit to the doctor showed I had rheumatoid arthritis,” she says.
Laura had never heard of the disease. And the doctor didn’t care to explain it to the shell-shocked Laura.
“He prescribed the drugs and sent me on my way. But even with the medication, the pain remained and even got worse. My aunt, a paediatrician, recommended that I see a rheumatologist.”
And so she did. After a battery of tests, the rheumatologist confirmed she had fibromyalgia.
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 25 May 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.
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