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
Morley and Outwood MP Andrea Jenkyns with her son,
nicknamed "Brexit Clifford" because he was
born on March 29 2017, the day Article 50
was triggered to leave the EU.
Tory MP Andrea Jenkyns 'cannot remember a day without pain' in 15 years
An MP has spoken for the first time about her battle with a condition that causes pain so excruciating it can leave her feeling “paralysed” for days.
Conservative Andrea Jenkyns revealed her experiences with glossopharyngeal neuralgia (GPN), which is similar to trigeminal neuralgia, a condition which has been called “the suicide disease, because they say it’s one of the worst pains known to men”.
Ms Jenkyns also has fibromyalgia, a long term-condition that causes pain all over the body and has meant she “hasn’t had a day free of pain in 15 years”.
The Morley and Outwood MP’s reaction to both conditions is to “just get on with things”, but she is speaking out to raise awareness and encourage research.
Mia Anderson knew something was wrong; she just didn’t know what. It was late 2014 and the sophomore pre-med student at the University of Florida was under typical exam stress, she thought.
It was more.
“My brain wasn’t working very well. I was confused,” said Mia, 23, who lives in Maitland. “I was having to put in a lot more effort than my peers. I was napping every other hour. I really didn’t know what was going on.”
It turned out that Mia, like at least 1 million people nationwide and maybe as many as 2.5 million, has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). And very few answers.
It isn’t a rare disease. More people in the United States suffer from it than from multiple sclerosis or muscular dystrophy. There is, however, no type of bio-marker to diagnose the disease and no FDA-approved treatments.
Mia’s mother knew all about ME/CFS. After having children, Nancy Anderson was diagnosed with auto immune thyroid disease and “was never really well for 15 years while trying to raise children.” She finally learned it was ME/CFS after a visit to a specialist at Stanford University. She was put on a potent blend of antiviral and anti-inflammation medicines, which brought her functions from “45 to 85 percent,” said Anderson, a nurse whose husband, Mark Anderson, is a doctor.
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 18 June 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.
ME/CFS will be spoken about in the SA Parliament this week.
Sunday 17 June 2018
Sam Duluk, MP for Waite, will be talking on ME/CFS during what is called a Private Member's Grievance session, 3:15 – 4pm. It would be lovely to see as many people as possible in Parliament House this Wed, 20th June, to show our support from the public gallery. (Details below).
Sam supported our recent badge day and became more aware of the plight of pwME, leading him to offer to raise our issues in parliament.
Details:
Meet in the Parliament House foyer at 2:45pm, ready to be in the Chamber by 3pm.
Wear your #MillionsMissingT-shirt or something red so we stand out in the gallery. If you don't have red then our traditional colour blue. But come, whatever colour you wear!
If you are unable to join us you could send a delegate - family and friends welcome!
Australia’s National Health and Medical Research Council (NHMRC) answered questions from Greens, Centre Alliance and Labor senators at Senate Estimates budget hearings. Senator [Stirling] Griff asked if they would add experts in biomedical research to the ME and CFS advisory committee. Senator [Jordon] Steele-John asked if were appropriate concerning if a member of the panel thought that ME or CFS patients could be cured by aqua aerobics. Senator [Murray] Watt asked if the NHMRC will specify criteria or guidelines to be used in the studies it funds.
“We have formed an expert committee which is made up of people with a particular interest in this sort of issue and with the type of clinical and biomedical skills that are necessary to understand the type of clinical situation,” said Prof Kelso.
When Senator Griff asked if the NHMRC would consider adding members with biomarker and molecular experience, given the importance of biomedical research and the limited experience of the committee, Prof Kelso said she would need to take the question on notice. He noted that on the USA’s equivalent committee, all members have biomedical research expertise.
Prof Kelso said there were two experts, Prof Sonya Marshall-Gradisnik and Prof Andrew Lloyd with research experience, saying he has a ‘long term interest in the relationship between virus infections and chronic fatigue syndromes and is a clinical immunologist and would have a very good understanding of this area.’ While Lloyd has received much of the NHMRC’s funding for CFS research, he has said 90 percent of his work has nothing to do with CFS, it is mostly hepatitis C, and the work he does do on CFS is to rollout CBT and GET training despite the evidence against it.
Senator Griff asked if they sought public expressions of interest for the committees. Prof Kelso said no, but it was possibility and certainly worth considering.
Senator Watt asked, in writing, how the NHMRC planned to include the views of Australia’s leading scientists and clinicians. The NHMRC answered that they had an advisory committee of experts and referred him to the NHMRC’s website.
He asked about making the process more transparent. Again the NHMRC referred him to the same page of their website.
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.
Meet a Doctor Who is a Grandma and a Fighter for Chronic Pain Patients
By Ed Coghlan
June 13, 2018
Copyright 2018 National Pain Report
Let me tell you a little secret. Part of how we have tried to grow the National Pain Report is to continually search for important voices. Sometimes they are patients or loved ones who have a story to tell. And sometimes it’s a doctor.
Let me introduce you to Dr. Debbie Nickels Heck from Muncie, Indiana. She was a woman who went to medical school in her 30’s, is a mother of three, a grandmother to seven and a woman with some very strong opinions about the environment in which chronic pain patients are being treated.
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
After 25 Years Battling Illness, Actor Prepares To Showcase New Film
There have been days when Kirsty Strain’s ME symptoms were so bad, she has been unable to get out of bed. But she is making up for those lost days now.
Over the coming weeks, the actress will see the seeds of her creative endeavours come to fruition with a prolific run of work including a film she conceived, wrote, directed and stars in herself.
The 37-year-old Glaswegian is best known for roles in BBC Scotland programmes such as comedy series Burnistoun and weekly drama River City.
Yet 25 years ago, she first encountered the symptoms of which would eventually lead to her being diagnosed with Chronic Fatigue Syndrome, also known as myalgic encephalopathy.
There is, as yet, no cure for the debilitating condition, which affects an estimated 250,000 people across the UK.
Living each day in constant pain and exhaustion is not something you would imagine for a teenager, but this is Tara Davies' reality.
The 19-year-old from Cheswick Village near Filton has spent years managing a hidden illness which at one point become so bad she could not be tickled by her mum without suffering in agony.
Accompanying the EDS, Tara also suffers with Chronic Fatigue Syndrome and Postural orthostatic tachycardia syndrome (POTS) which means when she changes from lying to standing it causes an abnormally large increase in heart rate - making her extremely dizzy.
Chronic pain sufferers in the north-east are waiting far longer for treatment than elsewhere in the country according to the figures, which cover the first three months of this year.
Chronic pain conditions are defined as any illness which stays with someone for the long-term such as fibromyalgia, ME, and chronic pain syndromes.
In Grampian, the average waiting time is 42 weeks – more than double the second-highest, Ayrshire and Arran, at 21.
Among patients who have yet to be seen at the pain clinic in Aberdeen, 54% have been waiting longer than the Scottish Government’s target 18 weeks.
And a whopping 83% who have been seen have waited longer than 18 weeks.
The mother of a teenager who suffers from fibromyalgia, ME and chronic fatigue syndrome has said the lengthy wait makes personalised care difficult.
Elaine Sclater’s daughter Abbie, from Inverbervie, has suffered from chronic pain since she was a child.
Some days her body aches from head to toe but this "warrior" refuses to let it rule her life.
At the age of 19, Charlotte was diagnosed with Fibromyalgia - a rare condition that causes pain all over the body.
She had already battled a number of health issues during her teenage years and says coming to terms with her diagnosis was tough.
It has forced her to pull out of university three times, once due to bullying because of her condition. She also had to leave a job she loved because she could not fulfil the role requirements.
But despite her often daily struggles she says she is proud of what she has and will achieved - and she says she won't let it ruin her life.
"If you saw me, you wouldn’t know anything was wrong," she says.
"I may look okay, but I’m very good with putting on a mask."
A young friend and woman are now considered heroes after they teamed up to perform the incredible rescue of a boy drowning in a pool. The quick thinking of the two, which ultimately saved the boy's life, was all caught on a surveillance camera.
Evan, 12, was swimming with friends at a pool in Rochester, Minnesota, when he sunk to the bottom, while five fellow swimmers were splashing away.
Luckily, 13-year-old Cody Runyon sensed something was awry.
"I went underwater and all of a sudden I see him just lying on the ground just sitting down on 5 feet, just passed out," Cody told "Good Morning America."
The 4-foot-11, 80-pound teen rushed to the bottom of the pool and pulled an unconscious Evan to the shallow end -- the entire scene was caught on a surveillance video.
"I held him around the waist, put his head over my shoulder and I just carried him like that," said Cody of the Wednesday incident.
Desiree Pasko -- who suffers from a severe case of fibromyalgia and can barely walk -- arose from her wheelchair and ran over to the pool edge to assist.
“It’s not as if you are disabled or anything” - this is what a GP reportedly told a Bridgwater woman shortly after she was diagnosed with Myalgic Encephalomyelitis (M.E.) and Fibromyalgia.
Nicky Morley, from Othery, Bridgwater, is keen to tell the world about her life changing condition following a road accident in January 2012.
The 48-year-old said: “I had full-body nerve, joint and muscle pain, and could not stop sleeping.
“I went back to A&E a few days later and they said it was just shock.
“I spent the next 12 months seeing various GPs, neurologists and rheumatologists, and was eventually diagnosed with both M.E. and Fibromyalgia.”
Forty-three percent of office workers simultaneously experience gastrointestinal distress and chronic fatigue syndrome, a study conducted by the Taiwan Association for Lactic Acid Bacteria showed.
The study, which interviewed 1,068 office workers between the ages of 25 and 49, also showed that the proportion of people with chronic fatigue syndrome was 29.4 percent higher among people with gastrointestinal distress than among those without gastrointestinal distress.
Many people think that fatigue is only associated with stress and physical labor, association honorary chairman Tsai Ying-chieh (蔡英傑) said on Thursday.
However, gut microbiota disturbance and prolonged gut microbiota imbalance could create a negative chain reaction, leading to chronic fatigue syndrome, he said.
Imagine: you slip gently into the Land of Nod as a high-drive, progressive, active, healthy person only to awaken to an unexpected, uninvited invader. Under the cloak of darkness, it has stealthily and rapidly colonised your world, rendering you a useless, frustrated spectator in the brutish annihilation of your hopes, dreams, aspirations and ambitions. Your liberty and life as you knew and planned it, robbed and taken from you against your will. Just imagine!
Welcome to an insight into the life of someone waking up every morning to wage war on the invisible yet omnipotent tyrant otherwise known as chronic fatigue syndrome. You get sick, you don’t get better, as the days bleed into weeks, the weeks seep into months and the months normalise into years, you continue to disimprove.
Let me first articulate the insulting inadequacies of the name itself. It evokes a fluffy suggestion of nothing more than some sliding scale ranging from tiredness to exhaustion. It could be deducted from the name that a bit of sleep would cure all. However, even excess hours of sleeping fail to result in a refreshed awakening or even a sniff of a cure. A name has never failed a medical condition more degradingly.
Ahead of an event in Durham to raise awareness of ME, Hannah Davies spoke to one young sufferer and her family
HOPE Simpson is a 16-year-old with big dreams of becoming a photographer. But despite being clever, talented and dedicated, she’s continually frustrated by the limitations of her body. On a bad day Hope, of Bishop Auckland, can only lie down in bed. Her mother Catherine, 45, has to wash and dress her – and even holding a conversation can exhaust her.
She is one of the estimated 12,000 people in the North-East to suffer from Myalgic Encephalopathy (ME), a devastating neurological disease which can leave sufferers bedbound, unable to perform simple tasks and at times unable to communicate with their loved ones.
Scotland's only nurse specialising in myalgic encephalomyelitis (ME) has called for urgent change to help improve the lives of at least 20,000 Scots affected by the condition.
NHS Fife's Keith Anderson said the lack of knowledge about ME among fellow medical professionals was "scary" ahead of a Holyrood event to raise awareness of the little-understood illness.
ME, sometimes known as Chronic Fatigue Syndrome, is a debilitating neurological disease which causes symptoms including profound fatigue and cognitive impairment.
