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.
Disclaimer
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.
Support
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Saturday 8 April 2017
1:30pm Speaker: David Mitchell
Topic:
What do genes, hormones and supplement insufficiencies have to do with ME/CFS?
Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek
Topic: Brain structural changes in ME/CFS – recent research findings
Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017
Saturday 18 November 2017 Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.
NICE To Begin Review Of Its Guidance On The Diagnosis And Treatment Of CFS/ME
NICE is to begin a review of its 2010 guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) following a recent public consultation with patient and professional groups.
Sir Andrew Dillon, NICE chief executive, said: “The strong message from stakeholders was that the continuing debate about the causes of this condition and the best approach to treatment argued for a review of the current guideline.
“We will now recruit a guideline committee which will include people with the condition and their carers, the healthcare professionals who treat them and the organisations which commission that treatment. As with all the guidance we produce, we will also ensure that stakeholders have the opportunity to provide evidence and insights throughout the development of the guideline.”
Remember the worst bout of flu you’ve ever experienced. Does the thought of it send queasy sensations down your spine?
Now imagine feeling like that, but worse, every single day of your life. 24/7. Unrelenting malaise.
Imagine the body you used to walk in working against your dreams, hopes and aspirations. Imagine an invisible disease that stops you getting out of bed everyday. That’s what life is like for someone with M.E… Just ask Alice.
Despite a profound and persistent fatigue that struck when he was 40 and lasted through his 50s and into his 60s, Leonard Jason, a psychology professor at DePaul University in Chicago, is a remarkably productive scholar at 68. He has published 700 scientific articles and has written or edited 27 books.
He doesn’t consider himself fully recovered and is careful to manage his energy. But Jason has come a long way from his darkest days, when he had to take medical leave from his tenured position for more than a year.
Upon his return, he could only work an hour a day before slowly building back up to eight hours. “I had a chronically sore throat and all the typical viral symptoms you could imagine. It was like the worst case of the flu you could have,” Jason says.
If there was a silver lining to his suffering, it was discovering a new line of research for him: chronic fatigue. As he convalesced from the crippling fatigue that apparently arose from a case of mononucleosis, Jason began reading about long-term fatigue. Today, he’s one of the nation’s leading authorities, particularly a mysterious, often misunderstood medical condition called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). (Another proposed name for the illness: systemic exertion intolerance disease, or SEID.) There is no known cause or effective treatment for the illness.
Embargo broken: Bristol University Professor to discuss trial of quack chronic fatigue syndrome treatment
By James C Coyne
September 17, 2017
This blog post provides an alternative press briefing to compare and contrast with what was provided by the Science Media Centre for a press conference on Wednesday September 20, 2017.
The press release attached at the bottom of the post announces the publication of results of highly controversial trial that many would argue should never have occurred. The trial exposed children to an untested treatment with a quack explanation delivered by unqualified persons. Lots of money was earned from the trial by the promoters of the quack treatment beyond the boost in credibility for their quack treatment.
One can certainly understand the fact that fatigue professor Jos van der Meer is trying to trivialize the very serious scientific flaws the PACE-trial is known for.
The Dutch fatigue researches, not unfamiliar to Van der Meer, are suffering from comparable very severe scientific shortcomings.
Van der Meer commented on a blog Jim Faas published in Medisch Contact (more (in)conveniant thruths). According to the fatigue professor it lacks nuance toward the description of CBT (talking therapy) and GET (moving).
However, a real example of a lack of nuance and a lack of underpinning, can be found in the overenthousiastic publications of Dutch fatigue researchers and their claims in the press about the allegedly great results of cognitive behavior therapy and graded exercise therapy.
The Dutch fatigue studies show very clearly that these therapies have no curative effect whatsoever.
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.
Caroline Bowder on faith, love, and fatigue in a fictional England
MAGGIE ALLDER’s novel Living with the Leopard is set in the fairly near but unfortunately recognisable future, in post-Brexit England, where the ill and increasing homeless are considered feckless skivers, and religion, however mild, is labelled extremism. The Government controls by operation of Benefits, the ATTF (Anti-Terrorism Task Force), informers, and 1984-style surveillance.
Carrie, the protagonist, is denied career opportunities, having refused to “take the Oath of Allegiance”. But “Opposing authority is a little like sharing your life with a wild animal. You never know when it will pounce!” Hence the Leopard.
”The Leopard” is also Illness: the Chronic Fatigue Syndrome (suffered also by the author), which dogs the young Carrie — and the whole narrative — and produces one of the funnier aspects of the book, the corrective government course that Carrie has to attend to confront this anti-social condition.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 18 September 2017
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.
FASHION designer, entrepeneur, blogger and model Lisa McCabe has built a name for herself in the fashion industry – all while dealing with a 'hidden illness' that affects her life daily.
Lisa McCabe (28) from Enniskillen is a fashion designer with her own brand ‘Nor Lisa Fashion’ who lives with Fibromyalgia – a long term condition that causes pain all over the body.
Lisa has only been diagnosed within the part year, despite feeling the symptoms for seven years.
Lisa explained, “The biggest issue with Fibromyalgia is it’s completely unpredictable which makes it very difficult to arrange your plans.
“Some days I find it hard to get out of bed and get dressed with head-to-toe pain, fatigue, and stiffness – the next day it might only be knee pain.”
I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.
If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.
This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.
Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.
For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.
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.
Unrest provides an intimate look at Myalgic Encephalomyelitis–better known to people as chronic fatigue syndrome.
Directed by Jennifer Brea, the film was shot over four years through Skype interviews, self-shot footage on her phone, and through hired film crews that could be her eyes on the ground when she was bedridden 24/7.
A student at Harvard at the time, Brea was only 28 when she fell victim to a fever and doctors couldn’t explain what was wrong with her. Naturally, she begins to document her story through video diaries which would soon become Unrest. Eventually, she discovers other people suffering from ME/CFS and decides to interview them and film their stories. She doesn’t want to spend the rest of her life in bed as many diagnosed usually do as those diagnosed are sensitive to light and sound can be excruciating at times.
Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?
If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'
Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.
The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.
The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.
If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph. [08] 8302 1365). People who cannot tolerate more than five minutes of moving images (e.g. TV) should not apply.
We look forward to hearing from you.
Kind regards,
Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia
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