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.
SOCIETY SEMINARS FOR 2020
Annual General Meeting Date: 26 September 2020 Time: 2 PM Seminar Topic:Dr Anne Steinemann discussing MCS Venue: Online (via Zoom)
Thousands of young coronavirus patients have
reported
suffering debilitating symptoms weeks
and
months after testing positive for the virus.
(Source: Getty)
'A life sentence': The frightening trend emerging in young coronavirus patients
Doctors and researchers in the US – where the virus continues to spread in much of the country – are sounding the alarm about a growing group of people who are presenting with debilitating symptoms of Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome.
The disease, which includes a hugely diverse range of symptoms, is notoriously difficult to assess and diagnose making it difficult for patients to get recognition, let alone effective treatment.
As a result, the flood of coronavirus patients still experiencing devastating health effects months on have gathered in groups online where they share experiences, compare notes and vent their frustrations.
“I have both rheumatoid arthritis and fibromyalgia,” said owner Alexandra Marrero. “I wanted to make clothes that are comfortable and cater to those who have what I have. So I sell clothes that are recommended for people who have either rheumatoid arthritis and fibromyalgia.”
Marrero, who opened the doors to her shop on July 27, said her business started with her selling scarves from her closet in 2013.
“After that, I used my daughter’s room as the warehouse and then eventually I used my garage as the warehouse,” she said. “I would go to events and set up a table to sell my scarves and add other clothing as I got bigger. I made my business online in 2017 and then I finally got my own store where I opened this year.”
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.
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.
"It's the worst illness I've ever had," he told an ABC reporter. "I've had dengue. I've had malaria. I've never been as ill as this and it's been really frightening because it's so unpredictable."
He was on day 59 since being diagnosed, when this interview was recorded.
"The disease comes at you when you least expect it," he said.
"You feel quite well and then suddenly in the afternoon it slaps you round the head like a cricket bat.
"The length of the illness completely floored me. You just pray every day that it will go away."
Professor Garner is still dealing with exhaustion.
"It gives you some of the symptoms that are very similar to chronic fatigue [syndrome], but I am hesitant about calling it that," he said.
"If we call it Covid fatigue we know where we are.
"I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms."
(CNN) – Terri Wilder became dreadfully ill in 2014, falling asleep immediately each day after she got home from work and laying in bed all weekend, recovering just enough to drag herself to work the next week.
"I could barely raise my hand to hail a cab," she said.
After nearly two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also called chronic fatigue syndrome, a neuroimmune condition with symptoms including brain fog, severe fatigue, pain, immune aberrations and post-exertional malaise.
She had worked for decades as a social worker and activist for marginalized communities, focusing on HIV research and education programs and LGBTQ health. Wilder was shocked to find that ME/CFS lacked a drug approved by the Food and Drug Administration, and scientists studying the disease only received about $5 million annually in research funding from the National Institutes of Health.
At that point, she found herself in an altogether new marginalized disease community, reminiscent of the stigmatized groups she fought for at the height of the AIDS epidemic in the 1980s.
A chronic disease, ME/CFS can last for decades. It often takes root following some form of viral infection, for instance Epstein-Barr virus or Ross River virus. The novel coronavirus is just one more virus that can potentially trigger the onset of this debilitating condition.
Wilder fears that hundreds of thousands of people with Covid-19 could develop the same illness plaguing her. And leading medical experts have the same concern.
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?
National University of Natural Medicine, University of Washington, and Linfield College is conducting research on the topic of invalidation and stigma in adults who have been diagnosed with fibromyalgia. Invalidation refers to “discounting” and a “lack of understanding” which people with fibromyalgia receive from their social environment.
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 apfalzgraf@nunm.edu.
Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.
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.
What happened: Disability activist and editor of Able Zine Claudia Walder is among 41 activists featured in British Vogue’s September 2020 issue, “Activism Now.” Walder, who has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), wrote in an Instagram post that her inclusion in British Vogue is “a dream” come true. The British Vogue issue is on stands in the United Kingdom today.
A dream to be recognised for my activism in Vogue. Thank you Edward Enninful and the British Vogue team for believing in me. — Claudia Walder
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 10 August 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.
Listen to Huffpost UK Life’s weekly podcast Am I Making You Uncomfortable? about women’s health, bodies and private lives. Available on Spotify, Apple, Audioboom and wherever you listen to your podcasts.
“Honestly, I wouldn’t function without pain medication,” says Jennifer Brough, 30, who lives with fibromyalgia and endometriosis, two conditions that have “radically” altered her life since she was diagnosed.
“While I am reticent to take painkillers often, when I have incapacitating flare-ups, medication provides the necessary respite I need to function,” she says.
Chronic primary pain refers to chronic pain as a disease in itself, according to NICE. It includes issues such as chronic musculoskeletal pain, as well as chronic pelvic pain and fibromyalgia. In contrast, chronic secondary pain is where the pain is a symptom of an underlying condition.
The draft guidance suggests there’s “little or no evidence” the commonly used drugs for chronic primary pain make any difference to people’s quality of life, pain or psychological distress. But Brough disagrees. “To suggest painkillers aren’t effective solutions for managing pain is an oversimplification of the issue,” says the editor and writer from Croydon.
While the guidelines indicate some concern around the long-term impacts of taking pain medication, such as addiction, Brough believes removing this as a treatment option “will dramatically affect the physical and psychological wellbeing of vast numbers of the population”.
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
As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those recovering from coronavirus to listen up.
COVID-19 patients may be at risk of developing the neuroimmune condition ME/CFS that depletes one’s energy. ME/CFS, which leaves 75% of those affected unable to work and 25% homebound or bedridden, impacts 15 million to 30 million people worldwide, and symptoms may be triggered by an infection, according to the National Institutes of Health. Dr. Anthony Fauci, director of the National Institute for Allergy and Infectious Diseases, says some diagnosed with coronavirus are showing symptoms that resemble those seen in ME/CFS patients.
“The ME/CFS community is saying 80% of us had some sort of virus and that went away, and we’re still stuck with all of these symptoms,” said Sanna Stella, an Oak Park resident who was diagnosed with ME/CFS. “If you’re a patient, you really have to listen to your body and not all those ‘shoulds’ we tell ourselves. ... Because if you keep pushing, for some of these patients, it really will make things a lot worse.”
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.
