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)
Xanthe and her husband, Paulo, became unwell towards the end of March. Xanthe described classic Covid-19 symptoms: a horrible pressure on her chest, accompanied by a cough, burning pains and shortness of breath, all associated with diarrhoea and fatigue. Paulo’s picture, by contrast, was dominated by nausea, headache and debilitating muscle pain. Even though their presentations were so different, I confidently diagnosed them both with Covid-19. Two people in the same household, simultaneously unwell at the height of the first wave, one of them with typical symptoms: what else could be going on? I told them to expect recovery within a few weeks.
That was more than 14 weeks ago. Time and again, Xanthe has reconsulted with persisting symptoms. We have had her into our isolation room for an ECG and blood tests, and twice I’ve referred her for review at our local Covid-19 hot hub. At no point has she been bad enough to require hospital care. But she continues to be unwell.
The peculiar thing is the pattern. She will get two or three days with no symptoms but then the exact same cluster recurs. And Paulo is experiencing the same: recurrences of his own symptom pattern, not always coincident with Xanthe’s but, like her, punctuated by periods of a few days where he feels quite well.
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.
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’m always highlighting dodgy research from the CBT/GET ideological brigades. These studies are fun to tear apart (metaphorically and sometimes literally), but it’s also nice to be able to recommend some decent research. Below are a few recent papers that I have found to be of interest. All of them were published by the journal Work.
**********
Documenting Disability in Myalgic encephalomyelitis/chronic Fatigue Syndrome (ME/CFS)
In the Documenting Disability in Myalgic encephalomyelitis/chronic Fatigue Syndrome (ME/CFS)US (not to mention other countries!), it can be very challenging to obtain disability with a diagnosis of ME or CFS. A couple of years ago, Northwestern University law professor Steve Lubet and I wrote about a major legal victory in a private disability case. A new paper examines the situation with federal benefits—the difficulties in proving disability and strategies for successfully pursuing claims.
The paper’s stated goal is “to summarize the approaches used by experienced clinicians and lawyers in successful ME/CFS disability claims.” It can be accessed here.
A former public sector worker says she is disappointed with her employer as she battled to be understood in the workplace, after being diagnosed with a chronic illness.
Just seven months into her new job, Abby Malcolmson's life changed when she was diagnosed with fibromyalgia, a chronic illness causing long-term muscle pain and fatigue.
She was employed by the Ministry of Social Development (MSD) in Wellington in October 2018, helping people to apply for welfare support and learned she had fibromyalgia in early 2019.
However, she has since resigned due to work-related stress and is now on the sickness benefit. She said as a woman with a chronic illness, she felt she lost the battle to be fully supported in the workplace.
Over this period she had to learn how to live with extreme back pain and adjust her lifestyle including the way she worked which required her to ask for extra time off and the option to work from home.
"Stress really affects the condition and if managers are a lot more open and kind to speaking about it, it makes the whole process a lot easier."
As time went on, she said her workplace became stressful and challenging, and the requests for flexibility were not fully supported.
She said it was hard to balance work and learning to cope with a chronic illness, but felt her employer could not fully accommodate her when she needed it most.
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.
She said instead of spending Saturday moping, she wanted to do something positive.
Her run, done in 36 minutes, raised nearly £1,000 for two local charities.
Ms Stanley-Wills, who has fibromyalgia, osteoporosis and a false hip, ran a route from Northgate in Basford to Wollaton Hall with "amazing support from drivers along the way".
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.
Like so many others I thought I had flu back in February. I had no cough and no fever to speak of though it did feel something was in my lungs for weeks. I didn’t think about it again until my glands started to swell up every so often accompanied by a low-grade fever. Then I started getting a new cold sore per week. One morning I woke up with a whacking dose of sinusitis.
My body has been like a symphony of symptoms on and off since February. One day I would feel fine then suddenly be overwhelmed with excruciating fatigue, a sore throat and the same sort of seasick disorientation and dizziness that my occasional bouts of labyrinthitis used to bring on.
A month ago I woke up with pain in my chest and the familiar exhaustion (and shakes, tremors and confusion) but this time it stuck. I didn’t need a doctor to tell me that I was having a relapse not only of chronic fatigue (which I have had twice) but also every other malady I have suffered from in the past, including sinusitis, labyrinthitis and cold sores. This is not unique to me. When I log onto the Long Haul Covid Fighters Facebook page, I see dozens of reports of myalgic encephalomyelitis (ME) and even Lyme disease returning after Covid.
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.
Candy Malina, seen outside her Chicago home
on
June 10, 2020, survived her bout with the
COVID-19
virus
but continues to feel ill effects
more than two months later.
(Terrence Antonio James / Chicago Tribune)
‘What if I don’t get better?’ Some COVID-19 survivors struggle with symptoms for weeks, even months, mystifying doctors.
Candy Malina of the Lakeview East neighborhood tested positive for COVID-19 in mid-March, with a cough and flu-like illness she described as debilitating but never life-threatening or requiring emergency care.
Yet more than three months later, the 60-year-old social service agency administrator says she still suffers from lingering symptoms: hoarseness, coughing and gastric issues, along with an unrelenting fatigue that makes it difficult to function.
Since her diagnosis, she has tested negative for the virus twice. A positive serology test showed that her body is producing COVID-19 antibodies. But she does not feel recovered.
“I just passed 100 days … and I still have that intense feeling of fatigue and ‘brain fog’ every day,” said Malina, who has mild asthma but was otherwise healthy prior to the virus. “I have not been able to drive yet or walk more than a few blocks.”
She is among an emerging group of COVID-19 survivors, dubbed the “long-haulers,” who endure symptoms for weeks — even months — past the expected recovery period, mystifying physicians and scientists who are still grappling to understand the new virus.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 6 July 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.
Sonya Chowdhury, Sally Howard and Tanya Marlow
are among those hoping that a new genetic
research can help ME sufferers.
Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition
DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
On a good day, Tanya Marlow can sit up for three hours before needing to lie down again. Bedbound for 21 hours of the day, the 41-year-old writer tries to sit up for dinner but sometimes she can’t.
It wasn’t always like this. A bout of glandular fever when Marlow was 17 never seemed to leave, and eventually she was barely able to walk. In 2007, she was diagnosed with myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), a long-term, often debilitating, poorly understood condition affecting about 250,000 people in the UK.
“In 2007, I walked up a mountain,” Marlow tells i, “and the next day I could walk 10 minutes and then my legs collapsed. The next day I could do five minutes and then my legs collapsed.” She says the graded exercise therapy recommended by the NHS made her far worse. Then giving birth caused a severe relapse. “I was more helpless than the baby I was supposed to look after.”
Cognitive problems, often referred to as “brain fog” by patients, are also a symptom. “I would listen to someone talk and it was like they were speaking French,” says Marlow. “I could pick out the odd word but not arrange them in a meaningful way.”
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
