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)
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.
Researchers are pointing to a “hidden toll” of the Covid-19 pandemic, saying many patients are reporting debilitating fatigue months after their initial diagnosis.
They say some of the symptoms of what’s currently known as ‘long Covid’ mirror a debilitating condition, seen in other viruses in the past, known as chronic fatigue syndrome or ‘ME’.
The little-known and mysterious illness, myalgic encephalomyelitis, is usually preceded by a viral infection and can last for years.
Sufferers experience what’s known as a 'post-exertional malaise', where a small amount of exercise leaves them bed-ridden for long periods, and can struggle to work or perform everyday tasks.
Otago University professor Warren Tate, who has studied ME since 2011, says the condition matches many of the ‘long haul’ symptoms reported by Covid-19 patients.
He says ME can come on after a “dramatic immune response” where the body fails to recover properly, with symptoms including fatigue, bad sleep, pain, cognitive difficulty, brain fog, allergies, gastro-intestinal effects, and more.
Please join us this Saturday, 26th September, for our AGM and to hear Dr Anne Steinemann speak on Multiple Chemical Sensitivity, ‘The Fragrance Problem’.
Following the presentation, there will be question time and then an opportunity to catch up with others.
Call opens: 1:30pm (time to acquaint yourself with Zoom)
Meeting starts: 2:00pm
Members and their carers are free. Non-members $5.
Membership is only $5.
If you are not currently a member and would like to attend the seminar online, please pay before 5pm Friday.
Pay at https://bit.ly/369MJyP
If you would like help in setting up Zoom on your device before Saturday, please contact us on 1300 128 339 or email sacfs@sacfs.asn.au.
Management Committee
Trial By Error: UK Docs Speak Up On Long-Covid; Mayo Shifts Gears (A Little)
Doctors in UK urge caution on long-Covid exercise advice
Despite BMJ’s current dereliction of key editorial oversight responsibilities, it has provided a forum for members of the medical community with Covid-19 and post-Covid symptoms to express their strong views.
Even before we sent our letter, a sharp ME/CFS patient had previously highlighted multiple methodological problems with the paper in a cogent and persuasive rapid response. Among other issues, the study was described in the protocol as a fully powered trial but it was published—falsely—as if it were designed as a feasibility study seeking data for a fully powered trial. Given this indisputable evidence of questionable reporting of results and a broken peer review process, it is unclear why the journal and BMJ’s editorial leadership have so far refused to take action on this problematic paper—especially at a time when people around the world are desperately seeking reliable information about post-viral fatigue.
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.
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.
Gez Medinger used to run 90kms every week but
six months after contracting Covid-19 he is exhausted
by tasks as simple as taking out the rubbish.
(Photo: Supplied)
Covid-19's long shadow: 'The light at the end of the tunnel just isn't there'
Analysis - London filmmaker and runner Gez Medinger has gone from making thrillers and horror films to wondering if he's living in one. What does it feel like when you haven't yet recovered from the coronavirus?
North London resident Gez Medinger used to run 90kms every week. Now he's exhausted by everyday tasks: taking out the rubbish, browsing the Internet, sometimes even just texting.
He records his verbal responses to my questions. After speaking for just 15 minutes, his head is throbbing and his brain feels frazzled from the effort.
The 42-year-old has now hit the six-month mark after getting Covid-19, but still hasn't recovered.
In the United Kingdom, almost 600,000 people are reporting Covid symptoms that linger for more than a month - 12 percent of coronavirus survivors. This estimate is drawn from the Covid Symptom Study's analysis of data from 3.6 million app users.
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.
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.
Given the cancelation of the 2020 in-person IACFS/ME conference due to COVID restrictions, the Board decided to plan an alternative, if shortened, virtual meeting to gauge interest from the ME/CFS community. The half-day (Zoom) conference was held on 21 August 2020 and attracted 274 attendees from around the world, including researchers, clinicians, professional trainees, and patients. The attendance figure reached 80+ % of our in-person numbers. As one of the host moderators, it was clear to me that attendees were intensely interested in the research presentations, given scores of questions and comments for the speakers.
The Q and A feature was especially effective as ALL written questions were auto-posted and efficiently directed to speakers. I believe that many more questions were answered in this virtual (vs. in person) format because presenters had the option of selectively typing in answers as well as responding orally. Session topics included COVID-19, Treatments, Immunology, Metabolism, Heart rate variability and Clinical networks. Featured presentations were drawn from peer-reviewed abstracts previously accepted as orals to our (canceled) in-person meeting.
Similar to our in-person meetings, fully accredited CME was available. The feedback I received indicated that the format of short (10 min) talks kept people’s attention and that the 5 hours went by very quickly. A conference recording will be sent out to all attendees. For interested individuals who did not attend, a conference recording is expected to be available in mid-September on our website: iacfsme.org.
ME/CFS South Australia Inc Co-Signs International Open Letter
South Australian news
Monday 21 September 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.
Chloe Sargeant applied incidental mindfulness —
the practice of incorporating mindfulness into
your
everyday activities — to make-up.
(Supplied: Chloe Sargeant/ABC Life: Luke Tribe)
Using make-up as a mindfulness exercise to help with chronic pain
Two years ago, I was sent to a chronic pain clinic.
For nearly eight years I had begged innumerable GPs and specialists for help because I was in permanent, debilitating pain, as well experiencing erratic symptoms including fatigue, cognitive issues, tremors and mobility issues.
I was eventually diagnosed with fibromyalgia, an incurable condition that means my nervous system malfunctions and sends incorrect signals to my brain.
My pain psychologist recommended a series of management exercises, including pacing and meditation, but I quickly returned to her with some bad news — I couldn't meditate.
I'd looked up every meditation tip and trick on the internet and downloaded every app that offered guided sessions, but no matter what I did I couldn't quieten the permanent broadcast in my mind.
My clinical anxiety was getting in the way. So instead, she introduced me to incidental mindfulness: the practice of incorporating mindfulness into your everyday activities. I quickly started practising two of my favourite activities: cooking and playing Animal Crossing.
However, a burgeoning new hobby would soon become my favourite and most successful way of practising mindfulness: make-up.
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
