ME/CFS Australia (SA) 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 Australia (SA) 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 Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Saturday 30 June 2018
1:30pm Speaker:Diana Bordean, a physiotherapist who helps people with Fibromyalgia and ME/CFS. Topic: What can your physiotherapist do for you? Plus... ME/CFS Life Hacks. Bring along your favourite disability aid, piece of equipment or device. A Travelscoot and electric wheelchair will be available on the day to try out.
Saturday 11 August 2018 Annual General Meeting
1:30pm Speaker: Dr Mona Kaur Topic: Gut Health & ME/CFS New Venue: SACOSS, 47 King William Rd, Unley
Saturday 24 November 2018
1:30pm Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
ME is a debilitating and mysterious condition that often strikes people when they’re in their prime of their life.
Ian Moore was 38, a keen marathon runner and working in a busy job as an auditor when he first developed his symptoms.
After a year, he found his chronic fatigue, brain fog, memory loss, headaches and nausea had become so severe that not only was he forced to give up running, he was also unable to work and became housebound.
Told by his doctors the best they could advise was plenty of rest, Ian says he “wasn’t ready to give up and have no life” and set about researching about the role of diet, specifically leaky-gut syndrome theory.
‘I was so drained of energy, beyond just feeling tired, it felt like my body was just giving up’
Some people claim this is the cause of a wide range of long-term conditions, including ME (also known as myalgic encephalopathy, chronic fatigue syndrome, or CFS/ME) and multiple sclerosis. The belief is that the intestines have lost the ability to prevent food particles and toxins from entering the blood stream, and this triggers the illnesses through an autoimmune response.
Some say probiotics, gluten-free foods and low-sugar diets can ‘cure’ leaky gut syndrome. However, health officials, including the NHS, say there is currently little evidence to suggest this plays a role in ME.
But Ian, from Norfolk, feels strongly that there’s a link, after he eliminated his ‘trigger foods’, identified by an intolerance test, and his symptoms improved within weeks and disappeared within four months. He’s now back at work, training and looking forward to the arrival of his first baby.
From South Australian researcher Carolyn Berryman (via email):
Research Participants Wanted
Body Representation in Fibromyalgia: Ethics approval number: (H-2018-133)
Are you right-handed of any gender with Fibromyalgia and aged between 18 and 75 years? If so, we would like to invite you to participate in our study investigating body representation in Fibromyalgia.
The session will take place at NeuroPAD, 77 King William Rd, North Adelaide [see map below] and we would like to suggest that if you would like to come with friends who will also undertake the trial (people with FM or people without), we will provide morning or afternoon tea.
There will be ONE experimental session (lasting about 1 hour) involving two computer-based tasks which ask you to make either a left right hand judgement or a body scale judgement from pictures. You will then be asked to lift a simple, light object from the table up to 10cm while we record the activity on the surface of your muscles. There will be several questionnaires that you might like to fill out before and bring with you or complete at the time.
You will receive a $20 ColesMyer voucher for your time.
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 Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 16 July 2018
ME/CFS Australia (SA) 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 Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.
The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
The new site is designed specifically with clinicians in mind and offers information about how physicians can better assess and help their patients manage the illness. CDC’s new ME/CFS web content includes information about how ME/CFS presents and its clinical course, the diagnostic criteria released in 2015 by the Institute of Medicine (now National Academy of Medicine), and how healthcare providers can approach medical care for people who have been diagnosed with ME/CFS. The new web content is part of an effort to increase awareness among healthcare providers about this condition.
Not sure what you can do to support your ME/CFS community?
Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.
Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.
Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.
"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L
ME/CFS Alert Video: Interview With Dr David M Systrom
An active investigator and director of the Massachusetts General Hospital Cardiopulmonary laboratory, Dr. Systrom regularly publishes research examining pulmonary hypertension, pulmonary vascular disease, right heart failure and thromboembolic disease. He has authored over 130 peer-reviewed publications, has received funding from the National Institutes of Health and the American Heart Association, and has been named to the annual list of the Best Doctors in America. Dr. Systrom is a member of the American Thoracic Society, the American Heart Association and the American Physiological Society.
All content found in the ME/CFS Alert videos, including: text, images, audio, or other formats were created for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Chronic pain sufferers in the United States are facing another obstacle in their daily quest to manage their pain: the government’s crackdown on opioid painkillers.
Kelsey Konz, 28, said she used prescribed Vicodin to ease pain from her fibromyalgia, corneal neuralgia and endometrioses for several years. But doctors stopped prescribing her the painkiller late last year.
“They’re extremely scared to prescribe anything,” Konz said. “I basically tried everything that there is and the opioids are the only thing that works.”
New chronic fatigue syndrome test is 84 percent accurate
Myalgic encephalomyelitis/chronic fatigue syndrome does not currently have a diagnostic test. But this may soon change, as researchers have developed a test that can predict it with an unprecedented level of accuracy.
Currently, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is estimated to affect more than 1 million people in the United States, and up to 24 million people worldwide.
This often debilitating condition is characterized by feelings of extreme exhaustion, muscle and joint pain, and insomnia, as well as difficulty concentrating or remembering things.
The causes of ME/CFS remain unknown, and in the absence of a proper diagnostic test for it, healthcare professionals have to exclude other disorders and examine a patient's history before they can tell whether a person has ME/CFS or not.
Seminar Report: Cardiopulmonary Alterations In ME/CFS
South Australian news
Wednesday 11 July 2018
From Society member Bronwyn Caldwell:
Cardiopulmonary Alterations in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
By Bronwyn Caldwell
Wednesday 11 July 2018
Following our AGM on Saturday 18 November 2017, Dr. Max Nelson spoke to us about his very recently completed PhD. He had only finished that same week & was having a get together to celebrate directly after our seminar, so we were very grateful he was able to make time to pop in and speak to us.
Key Takes Outs:
Max’s background is in exercise physiology. Specifically looking at fatigue and the negative effects it has on the performance of athletes. He and his team had previously looked at the VO2 Max test to find markers of incomplete recovery from exercise in athletes.
Ultimately the best indicator of an athlete not being fully recovered from previous exertion was found to be heart rate increase (HRI).
For his PhD, Max chose to look at whether the VO2 Max test, when performed 2 days in a row, could produce a reliable indicator of ME/CFS induced post exertional malaise (PEM). This form of the VO2Max test is also known as the two-day bike test.
If found, a PEM marker could be used to diagnose ME/CFS and also improve treatment and management of the disease.
While most of the measures showed no significant differences between the trial and control groups, and there was no evidence of deconditioning in the ME/CFS patients, one measure was found that looks promising: work rate at ventilatory threshold.
This needs to be validated by other research teams replicating the work and the potential for the test to exacerbate patients’ symptoms evaluated.
DVDs of this seminar are available from the Association office ph 1300 128 339 or email firstname.lastname@example.org.