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.
A former COVID-19 patient rides on an exercise bike
to strengthen muscle tone at the Department of
Rehabilitative Cardiology of ASL 3 Genova on
July 24 in Genoa, Italy. She was in the hospital
for 15 days, suffering from great fatigue.
(Photo: Marco Di Lauro—Getty Images)
Have We Been Thinking About Long-Haul Coronavirus All Wrong?
A few years ago, Jaime Seltzer was helping coordinate research projects, grant applications and funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 2.5 million Americans, including Seltzer, have ME/CFS, and yet it felt like almost no one paid attention to her group’s research. “What is it going to take for researchers to take ME seriously?” she and her colleagues often wondered aloud.
The morbid answer, they hypothesized, was a pandemic. Since ME/CFS often follows viral infections, they feared it would take something as destructive as mass illness for the larger scientific community to take notice.
Unfortunately, this year they were proven right. As the COVID-19 pandemic presses on, doctors are increasingly worried about the significant subset of coronavirus patients—estimated to be somewhere around 10%—who are suffering symptoms like fatigue, brain fog and chronic pain for months on end. Many of them will soon fit the diagnostic criteria for ME/CFS, which is characterized primarily by debilitating exhaustion lasting six months or longer. This flood of potential new ME/CFS patients has, just as Seltzer predicted, thrust her once little-known condition into the spotlight.
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.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating disease of unknown etiology lasting for a minimum of 6 months but usually for many years, with features including fatigue, cognitive impairment, myalgias, post-exertional malaise, and immune system dysfunction. Dysregulation of cytokine signaling could give rise to many of these symptoms. Cytokines are present in both plasma and extracellular vesicles, but little investigation of EVs in ME/CFS has been reported. Therefore, we aimed to characterize the content of extracellular vesicles (EVs) isolated from plasma (including circulating cytokine/chemokine profiling) from individuals with ME/CFS and healthy controls.
Methods
We included 35 ME/CFS patients and 35 controls matched for age, sex and BMI. EVs were enriched from plasma by using a polymer-based precipitation method and characterized by Nanoparticle Tracking Analysis (NTA), Transmission Electron Microscopy (TEM) and immunoblotting. A 45-plex immunoassay was used to determine cytokine levels in both plasma and isolated EVs from a subset of 19 patients and controls. Linear regression, principal component analysis and inter-cytokine correlations were analyzed.
Results
ME/CFS individuals had significantly higher levels of EVs that ranged from 30 to 130 nm in size as compared to controls, but the mean size for total extracellular vesicles did not differ between groups. The enrichment of typical EV markers CD63, CD81, TSG101 and HSP70 was confirmed by Western blot analysis and the morphology assessed by TEM showed a homogeneous population of vesicles in both groups. Comparison of cytokine concentrations in plasma and isolated EVs of cases and controls yielded no significant differences. Cytokine-cytokine correlations in plasma revealed a significant higher number of interactions in ME/CFS cases along with 13 inverse correlations that were mainly driven by the Interferon gamma-induced protein 10 (IP-10), whereas in the plasma of controls, no inverse relationships were found across any of the cytokines. Network analysis in EVs from controls showed 2.5 times more significant inter-cytokine interactions than in the ME/CFS group, and both groups presented a unique negative association.
Conclusions
Elevated levels of 30-130 nm EVs were found in plasma from ME/CFS patients and inter-cytokine correlations revealed unusual regulatory relationships among cytokines in the ME/CFS group that were different from the control group in both plasma and EVs. These disturbances in cytokine networks are further evidence of immune dysregulation in ME/CFS.
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.
Flood and Comcare (Compensation) [2020] AATA 2152.
Key Points:
The Tribunal considered whether a Centrelink employee was entitled to receive ongoing compensation for multiple chemical sensitivity syndrome.
The Tribunal found that multiple chemical sensitivity syndrome is not commonly accepted as a medical condition and instead concluded that Ms Flood suffers from a psychological condition.
Despite the change in diagnosis, the Tribunal ultimately found in favour of Ms Flood.
Background:
Ms Flood was an employee at Centrelink’s office in Devonport, Tasmania. In February 2009, she experienced headaches and nausea which escalated to shakiness, a husky voice, a running nose, watering eyes, muscle aching, exhaustion, shortness of breath and chest pains. She attributed the symptoms to chemical odours in the Devonport office. Ms Flood was subsequently diagnosed with multiple chemical sensitivity syndrome (MCS) and she submitted a claim for workers’ compensation.
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.
Maggie Flannery and both her parents fell ill with Covid-19
symptoms in March, when testing was still scarce.
Months later, she’s had to limit her activities
and has trouble concentrating.
(Credit...Brittainy Newman for The New York Times)
At 12, She’s a Covid ‘Long Hauler’
Although most young people recover quickly, doctors are seeing some children and teens with lingering fatigue and other chronic problems.
In early March, when coronavirus testing was still scarce, Maggie Flannery, a Manhattan sixth-grader, and both her parents fell ill with the symptoms of Covid-19. After three weeks, her parents recovered. Maggie also seemed to get better, but only briefly before suffering a relapse that left her debilitated.
“It felt like an elephant sitting on my chest,” Maggie said. “It was hard to take a deep breath, I was nauseous all the time, I didn’t want to eat, I was very light-headed when I stood up or even just lying down.” She also experienced joint pain and severe fatigue.
At first, specialists suggested Maggie’s symptoms might be psychological, in part because she showed no sign of heart or lung damage. She also tested negative for both the coronavirus itself and for antibodies to it. But viral tests taken long after the initial infection are generally negative, and antibody tests are frequently inaccurate.
“They didn’t know anything about ‘long-Covid’ at that point,” said Amy Wilson, Maggie’s mother. “They said it was anxiety. I was pretty sure that wasn’t true.”
Maggie’s pediatrician, Dr. Amy DeMattia, has since confirmed the Covid-19 diagnosis, based on the child’s clinical history and the fact that both her parents tested positive for coronavirus antibodies.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 26 October 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.
Nathalie MacDermott is no stranger to deadly diseases.
She's worked on the front line of the Ebola epidemic in Liberia, Cholera in Haiti, and this year, treating children critically ill with COVID-19 in London.
But now she's fighting on a more personal front line.
Dr MacDermott is suffering serious, ongoing symptoms after contracting COVID-19 back in March.
...
Overlap with chronic fatigue syndrome
Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.
ME/CFS is a chronic and relapsing condition which can occur after a viral infection. The illness is characterised by extremely debilitating fatigue, "brain fog", muscle aches and pains, memory problems, headaches, and unrestful sleep.
There is some crossover too with another condition called fibromyalgia, in which people experience ongoing musculoskeletal pain all over their body.
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
AMA COVID-19 daily video update: Patient, physician share their experiences as COVID-19 long haulers
Watch the AMA's daily COVID-19 update, with insights from AMA leaders and experts about the pandemic.
October 15, 2020
Copyright 1995 - 2020 American Medical Association. All rights reserved.
Featured topic and speakers
In today’s COVID-19 update, AMA Chief Experience Officer Todd Unger looks into the issue of COVID long haulers, people who have not fully recovered from COVID-19, weeks even sometimes months after symptoms first appeared.
Mady Hornig, MD, MA, associate professor of epidemiology, Columbia University Mailman School of Public Health and COVID long hauler
Transcript
Unger: Hello, this is the American Medical Association's COVID-19 update. Today, we're talking about COVID long haulers, people who haven't fully recovered from COVID-19 weeks or even months after symptoms first appear and what we know about the long-term impact of this disease.
I'm joined today by Hanna Lockman, a COVID long hauler from Louisville, Kentucky, and Dr. Mady Hornig associate professor of epidemiology at Columbia University Mailman School of Public Health in New York.
Dr. Hornig is studying COVID long haulers and is a COVID long hauler herself. I'm Todd Unger, AMA's chief experience officer in Chicago.
...
Dr. Hornig: ...
And then, I had a fever that lasted 12 days, which started another week, that was at the end of April. So I'm nearing this six month mark now. And we are looking at all of these symptoms trying to see, even if we don't know the explanation, we're trying to see whether the grouping and clustering of these symptoms that are happening in Long COVID are potentially on a pathway for some individuals towards something called myalgic encephalomyelitis. Now that's a mouthful. It's popularly known as chronic fatigue syndrome or ME CFS, is the abbreviation.
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.
