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 24 March 2018
1:30pm Speaker:Carol Hunter of Rose Park Psychology. Topic: Coping strategies for patients, carers and families living with ME/CFS.
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
1:30pm Speaker: Dr Mona Kaur Topic: Gut Health & ME/CFS New Venue: SACOSS, 47 King William Rd, Unley
Saturday 24 November 2018 Annual General Meeting
1:30pm Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
It all started with a headache. My skull throbbed, and every joint felt like it was encased in hot lead armour. I didn't know it at the time, but I had a pretty bad case of glandular fever.
Evidently my tendency to kiss strange boys in nightclubs had caught up with me. Most people suffering from glandular fever feel better after six weeks or so. It's been three and a-half years, and I still feel like I'm trudging through Chelsea golden syrup, with my battery on 10%, and my mind thick and foggy.
For the last three and a-half years, I've been shuffled from doctor to doctor, and have been poked, prodded and prescribed all number of different ''remedies'' for my strange condition.
I've been told that my bone-deep tiredness is ''all in my head'', that it's a side-effect of depression, that I'm just overreacting. For a while, I believed them. I thought that I was just imagining the never-ending fatigue, the headaches, the sore joints. But then a month ago, I was finally diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
Patients with RA are at increased risk to develop fibromyalgia. Both disorders disproportionally affect women. RA may be treated with diverse types of medications that target pro-inflammatory cytokines — molecules released by immune cells — including analgesics, non-steroidal anti-inflammatories (NSAIDs), glucocorticoids, and disease-modifying therapies.
However, lack of response in some patients and medication-related problems warrant evaluation of alternative treatments.
She’s an articulate, intelligent young woman who once enjoyed the carefree life of a sailor, working on luxury yachts and travelling to exotic places, such as the Galapagos Islands and the Caribbean.
She spent the first half of her twenties on the world’s oceans, but for the past five years the 32-year-old has resided among dementia patients. However, it’s not living with the elderly she finds confronting.
Ketra has been diagnosed with the controversial medical condition chronic fatigue syndrome, also known as myalgic encephalomyelitis, or CFS-ME — an illness which cannot be confirmed by a simple blood test, but is estimated to affect 240,000 Australians to varying degrees.
Scientific evidence shows the complex condition, once derided as “yuppie flu” and its sufferers labelled malingerers or hypochondriacs, is biologically based and not psychosomatic.
But the medical profession is divided on how best to treat the mystery disorder.
Peter Cahalan Invites His Colleagues To Support ME/CFS
South Australian news
Wednesday 23 May 2018
May is ME/CFS awareness month and past President, Peter Cahalan, has sent us this heartwarming information.
"It's nice to report that my colleagues at the SA Tourism Commission are donating their casual clothes Friday contributions to the Society in May."
Many thanks go to Peter for this initiative, which will raise money while also raising awareness of ME/CFS amongst his fellow workers. Our sincere thanks also go to all the staff involved at the SA Tourism Commission for their support.
A slightly dorky but happy me. My warm-hearted colleagues at the Tourism Commission have chosen the MECFS Society as its charity of the month. For my friends who don't know: courtesy of our family's experience of myalgic encephalomyelitis/ chronic fatigue syndrome via our Liz, Penny and I were drawn on to the State Committee and I was president for some years. Like every totally volunteer- run small such society, every cent is treasured.
Andrew Forcer, of Park Road, Hartlepool who suffers from
Fibromyalgia, has written a song to raise money for the
treatment of the illness. He's pictured with the
album cover,
which he has painted.
Hartlepool dad with incurable illness pens song for charity album
A Hartlepool dad who suffers from a debilitating illness has penned a song for a new charity album which is hoped to raise funds and help those battling the condition.
Andrew Forcer has had fibromyalgia for the past five or six years and has had to give up work because of it.
The former hardware store worker, of Park Road, is passionate about helping to improve treatment options for people with the condition.
“A couple of years ago a friend got in touch to say that some guys in bands in Chester were putting on a concert for those affected,” said the 45-year-old.
“I ended up going down and the people involved were really enthusiastic, so there have since been other concerts there and an art exhibition which I was involved in.
“I wanted to write a song as a ‘thank you’ and my friend, who’s in a couple of bands, said if I got it done then he would be able to put music to it.
A Coventry University graduate is embarking on an ambitious knitathon in order to raise awareness and money in the fight against Myalgic Encephalomyelitis (M.E.).
Former occupational therapy student Lauren Childs is hoping that her knitathon, which has seen her knit hundreds of squares, will raise vital funds that will go towards researching the disease, which affects more than 250,000 people in the UK - including Lauren.
In 2014, after graduating from university, she was diagnosed with ME, which is also known as Chronic Fatigue Syndrome.
Auction houses like to talk about a vehicle as being a time capsule from a bygone era. H&H Classics has uncovered such a car — a 1967 Mini 850 Deluxe driven only 36,000 miles before being put into storage in 1983.
Though valued at £6,000 to £10,000 ($8,200 to $13,750), H&H expects the car to bring more than those figures at its July 18 auction at Buxton, Derbyshire, because of its pristine condition and its story.
“My father purchased GBV121E brand new in 1967 for his early retirement,” the consignor told the auction company. “The car was used mainly for holidays; my parents loved touring the Highlands of Scotland as well as North Yorkshire.
“My father was diagnosed with ME (Myalgic Encephalopathy, more commonly known as Chronic Fatigue Syndrome) in the early ‘80s. The Mini was very little used and in 1983 it was taken off the road.
“When my father was told he would never drive again he gave the car to me. It was sheeted and raised off the floor supported with wooden blocks under the sub frame to keep the weight off the suspension and wheels and never moved again until this year. So the car only ever had one driver.”
An ex-professional ballet dancer is using his art to raise awareness of a chronic disease. It’s one that affects around 17 million people worldwide, including him.
...
Sri Lankan born and Dutch bred ex-ballet dancer Anil van der Zee [website; Twitter] has been supporting this campaign. After a viral infection ended his career in 2007, van der Zee was later diagnosed with ME. But even though the disease has left him incapacitated for much of the time, he’s now using his love of art to raise awareness of ME. So, The Canary caught up with van der Zee, to discuss the millions of missing people, ME, and how one disease changed his life forever.
As Ruby Ruin left the stage and felt her feet cramping, her whole body aching, she knew something wasn't right.
The burlesque stage shows the 32-year-old had dedicated a large portion of her life to were now causing her such pain that behind closed curtains she couldn't stand without support. She had fibromyalgia.
She says for the last few months it was sheer adrenalin that got her through even a five minute performance of the high energy, dance performances which involved glitz, glamour and lots of feathers.
Her performances were hurting her so much she would spend weeks after her shows tired and sore and that sent her to "a really low place", she said.
The South Canterbury-based performer, who has won numerous awards including Queen of the New Zealand Burlesque Festival 2013 and has travelled the world with her talents, has retired after almost a decade in the industry. She performed her last dance at a show in Christchurch last weekend.
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.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 21 May 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.
BILLINGS - Before she was diagnosed with a rare, debilitating illness in 1995, a Bozeman woman painted large canvases and instructed art classes for children.
Today, due to her constant fatigue, Susan Henderson's art is confined to the screen on her computer, where she can sit and manipulate images with the press of a finger.
"I do digital art on my computer of my Bengal cats, and I superimpose it," said Henderson.
Henderson has kept up with her passion for art from a seated position ever since her Chronic Fatigue Syndrome came on.
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
'I'm At My Wit's End': Why Chronic Fatigue Patients Are Fed Up
Susan Hutchinson was never shy of an adventure, from climbing volcanos in Rwanda to joining the army reserves.
She now uses a mobility scooter to get around, can only work 10 hours a week on her PHD and relies on other people to help with everyday tasks like vacuuming.
She has Myalgic Encephalomyelitis - commonly known as chronic fatigue syndrome - and says there is poor recognition of the disease among medical professionals and the government.
Ms Hutchinson is currently battling to be approved for the NDIS but has been told she is "insufficiently incapacitated".
A MOTORIST who suffers from a debilitating illness which can lead to increased pain sensitivity across the body has told how Renfrewshire’s pothole epidemic has left her in agony.
While many drivers have been left fuming over the state of local roads, the problem is considerably worse for Abby Wood, who suffers from fibromyalgia.
The syndrome – the exact cause of which remains shrouded in mystery – can make even the simplest of daily tasks intolerable for Abby.
She told The Gazette: “Doing normal things can be extremely painful and exhausting. Even the touch of clothes on your skin can leave you with an intense burning feeling.
“Then you add driving in. Sitting in one position for a long period of time can be agonising, even on a pothole-free road.”
As revealed in a special investigation by The Gazette earlier this year, motorists in towns and villages across Renfrewshire have been demanding action to deal with the plague of potholes that can be found on the region’s crumbling carriageways.
KILMACOLM Library was packed with people recently for the launch of a book about the area.
Deborah Winters, 79, was diagnosed with Myalgic Encephalomlylitis (ME), also known as chronic fatigue syndrome, 26 years ago.
ME causes fever, aching, prolonged tiredness and depression and it’s estimated to affect 250,000 people in the UK.
Deborah was previously very active and after finding herself tired all the time joined a writers group to keep her busy. It was there she found her love of writing about Kilmacolm.
Georgie hasn't been able to work since she
contracted
Lyme Disease in 2015. (Image: Georgie Lule Mziu)
Young Chiswick dancer bitten by tick as teenager says Lyme Disease has 'stolen part of my life'
20-year-old Chiswick resident Georgie has struggled with Lyme Disease since 2015, she spoke to getwestlondon about her battle with the illness during Lyme Disease Awareness Month (May 2018).
Georgie Lule Mziu was well on her way to becoming a professional dancer but aged 17, she was bitten by an infected tick and had to "put her life on hold."
The Chiswick resident didn't notice anything was wrong until a large "bull's eye rash" developed around the tick bite on her calf.
Speaking to getwestlondon during Lyme Disease Awareness Month 2018, Georgie, now aged 20, said: "I was bitten in Norwich but I didn't notice till the next day and I had no idea what it was - it looked like a rashy bruise kinda thing - I thought I looked really cool, I was like 'ok - well whatever.'"
"It was big and covered almost the whole of my calf - it was like a bruise with a hole in the middle which was the bull's eye rash and it was hard with poison."
Despite suffering Lyme Disease symptoms including extreme fatigue, blurred vision, muscle aches, memory loss and even paralysis, Georgie wasn't diagnosed with the illness until two years later.
The society's constitution has been updated:
