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.
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.
Lady Gaga's New Netflix Documentary Is A Rallying Cry To Those Who Suffer From Chronic Pain
While Little Monsters everywhere have been lamenting Lady Gaga’s recent tweet announcing the postponement of the European leg of her Joanne World Tour, I have been rejoicing. Let me tell you why. The aforementioned Twitter bomb arrived with a tandem statement that Germanotta has been diagnosed with fibromyalgia, a chronic illness characterized by widespread pain, fatigue, mental fog, and many other debilitating symptoms for which there is currently no proven cure. I happen to be one of the lucky ladies who shares Gaga’s diagnosis and all the fun that comes along with it, and Lady G’s news gives me life because when superstars speak, we listen. And in true superstar style, Gaga has not only made an announcement, she has made a documentary about her experience. Gaga: Five Foot Two, which begins airing on Netflix today, captures Germanotta’s most intimate moments as she records her latest album while coping with recurrent pain, personal trauma, and the strain of being ever in the spotlight. It is a cinematic pop angel come down from on high with abundant lessons for all—those suffering from fibromyalgia and other still-not-understood illnesses and everyone else who shares a world with us.
“From as early as I can remember, I wanted to swallow the world whole,” first-time filmmaker Jennifer Brea declares at the start of her documentary Unrest.
As a young woman, she attended Harvard and then Princeton to study political science. She traveled widely and fell in love. And then she became incredibly, inexplicably tired, often unable to get out of bed and unable to get herself up off the floor if she fell. She was diagnosed with chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), a little-understood but not at all rare disease that affects an estimated 836,000 to 2.5 million people in the United States. It has no cure.
As a bed-ridden Brea explains in the film, “It was like I had died but was forced to watch as the world moved on.”
Nearly 30 years after chronic fatigue syndrome was given its unfortunate name, it’s still not understood or even completely accepted by the medical world: No definitive cause has been identified, nor any consensus treatment. And while it affects an estimated 1 million Americans and 17 million globally, those with the condition are often dismissed as suffering from psychosomatic disorders.
If nothing else, “Unrest,” by Jennifer Brea, demonstrates just how debilitating chronic fatigue syndrome, also known as myalgic encephalomyelitis, can be. Ms. Brea, herself a victim, was a well-traveled Ph.D. student at Harvard who fell ill after a high fever in 2011. Along with exhaustion, she experienced loss of muscle control, the inability to speak coherently, pain, and extreme sensitivity to light and noise. Specialists at first concluded that she was dehydrated or stressed; one even suggested a delayed reaction to some childhood trauma that she might not recall.
A controversial treatment for chronic fatigue syndrome (CFS) called the Lightning Process can help children get better, a trial has shown, much to the surprise of the doctor who put it to the test.
One in every 100 children of secondary school age has CFS, also known as ME, and it can wreck their lives. Those affected miss a year of school on average, many of them getting to classes on just two days a week. Half are bedbound at some stage.
Esther Crawley, a paediatrician and professor of child health at Bristol University, runs the biggest centre for children with CFS in the country, seeing about 400 patients a year. She embarked on a trial of the commercial Lightning Process because the children she cares for and their parents were interested in it.
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.  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.
Accredited Exercise Physiologist
University of South Australia
Dr Sarah Myhill has always been passionate about empowering her patients to find their own path forward to health. In this piece, she discusses the exciting new health portal she has recently funded, Natural Health Worldwide. It is an accessible, patient-friendly way of accessing experts in their field, including those who are expert by experience.
One of the great disconnects of our age is between large, bureaucratised systems of healthcare and those using them. This is particularly acute for patients who have poorly understood conditions. They are often made to feel that they are to blame for being difficult or demanding when they try to access a decent standard of investigation and treatment. Sometimes those patients give up, demoralised and confused. This means they must work even harder to get the right kind of help. And this is exactly what Dr Myhill wants to make easier for them. Dr Myhill wants to help all patients but especially those who presently give up because there is simply nothing out there for them – Natural Health Worldwide is now out there for them!
Because she has a devoted group of people she’s treated and helped, when Dr Myhill faced investigation by the General Medical Council, they sent donations to help her fight her case. She never asked for these donations, never used them, but instead saved them, and this is how she has funded Natural Health Worldwide, as a thank you to all those patients she has treated over the years. She is not receiving financial benefit from the portal.
The portal exists as a professional eBay for opinions, and it allows practitioners to function without the overheads of paying for an office or support staff. Each practitioner has their own area of particular skill and interest. It allows any person to access any practitioner and consult by telephone, email or Skype. After such a consultation they can leave star-ratings and reviews of sessions they've received to build a reputation for that practitioner. This helps others to choose their practitioner of choice. In this way, future patients have the benefit of previous patients’ reviews to aid their decision-making.
Dr Myhill is particularly enthused by the number of ‘expert patient’ practitioners on the site because she knows just how hard-won their knowledge has been.
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.
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.
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.
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.