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
Speaker: to be announced
to be announced
Saturday 11 August 2018
Speaker: to be announced
to be announced
Saturday 24 November 2018 Annual General Meeting
Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI
Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
Director and project manager, Kat Clatworthy, from Cefn Cribwr near Bridgend, explained that the film revolved around a father and daughter’s relationship, twisted with a horror element of war between Vikings and vampires.
If the challenge of directing a film for the first time wasn’t enough, Miss Clatworthy is also battling a condition herself.
She added: “In 2016 I was diagnosed with fibromyalgia so it’s been a bit of a struggle.
“We are filming the making of the film to show people that it’s been very up and down.”
“Many cases of autoimmune illness are difficult to treat and can result in debilitating symptoms. Studies like this are allowing us to untangle environmental and genetic factors that may cause the body’s immune system to attack its own tissues,” said NIAID Director Anthony S. Fauci, M.D. “A better understanding of the complex causes of autoimmunity promises to lead to better treatment and prevention options.”
Trial By Error: Two Interview Podcasts, and “Conflicts of Interest”
By David Tuller, DrPH
Monday 16 April 2018
For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message:
On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link below identifies me as being from Berkley University.)
And last Wednesday, before flying from Adelaide to Perth, I was interviewed for a podcast on Radio Adelaide, along with long-time ME/CFS patients Penelope McMillan and Tania Emma. The podcast was posted on Sunday.
Let me say this right off the bat: I’m not writing this to draw attention to me and my struggles.
I’m writing this on behalf of the majority of people living with ME/CFS. I feel I can say that because the severity of my condition more accurately represents the typical experience of ME/CFS than the examples in The Feed’s investigation.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is clinically defined and characterised by persistent disabling tiredness and exertional malaise, leading to functional impairment.
This study introduces the weighted standing time (WST) as a proxy for ME/CFS severity, and investigates its behaviour in an Australian cohort. WST was calculated from standing time and subjective standing difficulty data, collected via orthostatic intolerance assessments. The distribution of WST for healthy controls and ME/CFS patients was correlated with the clinical criteria, as well as pathology and cytokine markers. Included in the WST cytokine analyses were activins A and B, cytokines causally linked to inflammation, and previously demonstrated to separate ME/CFS from healthy controls. Forty-five ME/CFS patients were recruited from the CFS Discovery Clinic (Victoria) between 2011 and 2013. Seventeen healthy controls were recruited concurrently and identically assessed.
WST distribution was significantly different between ME/CFS participants and controls, with six diagnostic criteria, five analytes and one cytokine also significantly different when comparing severity via WST. On direct comparison of ME/CFS to study controls, only serum activin B was significantly elevated, with no significant variation observed for a broad range of serum and urine markers, or other serum cytokines.
The enhanced understanding of standing test behaviour to reflect orthostatic intolerance as a ME/CFS symptom, and the subsequent calculation of WST, will encourage the greater implementation of this simple test as a measure of ME/CFS diagnosis, and symptom severity, to the benefit of improved diagnosis and guidance for potential treatments.
Activins, Pathology, Analytes, Biomarkers, CFS ME, Standing time, Orthostatic intolerance
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 April 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.
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
How Sporty, Active Sarah's Life Changed When ME Struck
SARAH Reed, the wife of former Loughborough MP Andy Reed, has talked publicly for the first time about the chronic illness that left her so exhausted she could not get out of bed – even when she thought their house was being burgled.
Sarah was speaking ahead of a screening of a highly acclaimed documentary in the town next month.
The film, Unrest, which was shortlisted for an Oscar, highlights the devastating and life-changing effect Myalgic Encephalomyelitis (ME) has on the lives of patients and their loved ones.
A DISABLED grandfather is demanding an apology from Gwynedd Council after his seaside break with his grandson was ruined due to little or no disabled access, he claims.
Dean Shaw – who uses a mobility scooter as he suffers with Fibromyalgia, CFS (Chronic Fatigue Syndrome) and Osteoporosis – says he was aghast to find almost no provision for disabled people in Barmouth and “feared for his life” as he was forced to go onto the road and dodge traffic.
A different voice will be heard on Capitol Hill on May 12 to 15: a gentle, sad voice coming not from lobbyists or politicos but from an irregular army of sick people. It is a voice that has grown stronger in recent years but is still just a zephyr among the hurricane winds that blow in Congress. For Congress, it will be an invasion of sighs.
They will be on the Hill to petition their government for more research funding for the disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
They will not be coming with checks for campaign coffers, nor with partisan arguments, but simply to make their case that the federal government should put ME on a par with diseases of similar devastation and increase the minuscule funding. They also want Congress to use its bully pulpit to preach a message of urgency and need.