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.
The "Million Reasons" singer was advised by her medical team to cancel the European part of her tour promoting her platinum-selling album Joanne, including her scheduled show in Manchester on February 6.
Jag Cunliffe, 35, from Stalybridge, was diagnosed with the same debilitating chronic pain condition as Lady Gaga after she was involved in a serious car accident in 2012.
Jag, who was due to attend the concert in Manchester, has had her life dramatically changed by the condition.
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 19 February 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.
A reader reminded me I forgot about a segment of the story: the patients who legitimately need opioids to battle chronic pain and have productive lives.
“It’s real easy to say, ‘Crack down on opioids,’ but at what cost to those of us who actually need them?” said James, a 66-year-old Wichita businessman. “There are some of us who absolutely have to have these drugs or we can be in bed all day in great pain and utterly unproductive and on disability.
“Which is better for society?”
James, by the way, isn’t his real name. He’d rather not reveal his identity. Close friends and co-workers know he has severe spinal-related pain, fibromyalgia and chronic fatigue syndrome, but he doesn’t want the world to know.
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.
A bout of exercise is about the last thing you'd imagine a person with chronic fatigue syndrome – also known as myalgic encephalomyelitis and often designated by the acronym ME/CFS – would want to endure. And you'd probably be right.
But a new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don't. That's important, because one of the things that have made efforts to treat and, perhaps, cure the debilitating disorder – which according to Stanford ME/CFS expert Jose Montoya, MD, afflicts between 1 million and 4 million people in the United States alone – almost preternaturally difficult has been the difficulty in establishing a definitive diagnosis for it. (That explains the large range in Montoya's estimate of the number of people with ME/CFS: A lot of people who have it don't know they have it – or at least their doctors don't.)
Recent work by Montoya and other Stanford researchers has identified a "signature" consisting of altered levels of as many as 17 different bloodborne substances in ME/CFS patients. But the signature is written in disappearing ink: Patients with an ME/CFS status of longer than three years in duration appear to lose it. Likewise, levels of some of these substances move in opposite directions among patients whose cases are more severe versus patients with less-severe cases.
A controversial disease known as Multiple Chemical Sensitivity (MCS) has become an unlikely point of inspiration for Raf Simons, the creative mind behind Calvin Klein.
During his Tuesday New York Fashion Week show, Simons referenced the 1995 Todd Haynes film Safe, which stars Julianne Moore as Carol. The main character becomes a victim in her own home and the world around her. She is, in short, allergic to her own life, as she begins to develop mysterious symptoms — mystery bleeding, fatigue, and weight loss — all inexplicable to doctors. As Carol becomes increasingly curious about what is causing her pain, she suspects the environment and starts wearing long sleeves and a balaclava to stay protected.
A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at an early stage the issues they consider most important for the development of the new guideline.
Over 45 people attended the workshop, representing 37 different organisations supporting people with ME/CFS.
NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.
Professor Mark Baker, director of the NICE centre for guidelines, said: “We wanted to get the views and insights of as many people as possible who are affected, either directly or indirectly, by ME/CFS to make sure we understand the issues that are important to them.”
Belleville, Illinois, Feb. 14, 2018 (GLOBE NEWSWIRE) -- The Invisible Disabilities Association (IDA), an organization dedicated to raising worldwide awareness of invisible disabilities, and Allsup, the nation’s premier provider of Social Security Disability Insurance (SSDI) representation, today announced the launch of the #IAmInvisibleNoMore video contest.
Individuals living with invisible disabilities who upload their personal stories on video will be eligible to win prizes including a trip to Denver to attend the IDA Awards in October.
“Living with an invisible disability means struggling to get people to believe you when you explain how your condition affects you,” said IDA founder and CEO Wayne Connell. “Imagine being labeled as lazy or rude because people don’t appreciate how your illness makes certain activities impossible. This disbelief not only affects relationships, it can be a barrier to care and benefits as well.”
This year, an all-vegan cruise is coming to Australia for the first time. The Whole Connection plans to launch a nine-day trip from Sydney that will coast around the Pacific Islands on a five-star cruise ship, The Celebrity Solstice. It’s a voyage to help people discover “optimal health, vitality, and wellbeing” in their life.
Paige Renshaw can up with the idea for all-vegan cruise, as she had recently switched over to a plant-based diet herself. She’s suffered from chronic fatigue syndrome, a mysterious disorder that makes people constantly tired and struggle to recover after resting. Not much is known about the cause, but Renshaw tackled it by changing her eating habits to a plant-based diet.
The collection features funky pieces such as ‘East Hull Elvis,’ as well as ‘The X-Factor Princess,’ and everything in the gallery has been put together with the help of the homeless and recovering drug users.
I went from doctor to doctor looking for answers, but overnight I had gone from being a trusted rabbi and chaplain (who works with seriously ill and dying people on hospital medical teams) to a “hysterical” chronically ill person. Though I had seen it happen to my clients, I now understood firsthand that being disbelieved is nearly universal for people with chronic illnesses, especially those that are largely invisible or hard to diagnose or both. I had believed that as a health care professional, equipped with skills and advocates to navigate the system, I would be treated differently. I soon learned how hubristic that was.
Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.