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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

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

Eco Pest Control

ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.

BankSA & Staff Charitable Fund

ME/CFS Australia (SA) Inc wishes to thank BankSA & Staff Charitable Fund for its support of Talking Point, the Society’s official journal.

Society Seminars for 2016
Saturday 20 February 2016
1:30pm
Dr Katia Ferrar and Ms Minh Pham from the University of South Australia discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”.

Saturday 9 April 2016
1:30pm
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016
1:30pm
Dr Ian Buttfield discusses the ANRES website.
Mr Max Nelson discusses his PhD and two-day bike test study.
Dr Katia Ferrar presents an information document on her research.

Saturday 27 August 2016
Annual General Meeting
1:30pm
Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.

Saturday 19 November 2016
1:30pm
Dr Rachel Wells talks about the new Autonomia Clinic at the Royal Adelaide Hospital and what they are doing about POTS and other dysautonomia symptoms common in ME/CFS.
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

www ME: International Consensus Criteria
(Journal of Internal Medicine, Aug 2011)
PDF

For GPs:
ME – Adult & Paediatric:
International Consensus Primer for Medical Practitioners
(2012)

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)
(English)

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)
(German)

PDF

ME/CFS Guidelines for psychiatrists

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
 
Australian ME/CFS Societies
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
Web: www.mecfscanberra.org.au
Email: mecfsadmin@shout.org.au
NEW SOUTH WALES
ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
QUEENSLAND
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
Facebook Page
SOUTH AUSTRALIA
ME/CFS Australia (SA) Inc
Postal address: PO Box 28, Hindmarsh SA 5007
Support line: 1300 128 339
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VICTORIA
TASMANIA
NORTHERN TERRITORY

Emerge Australia
Web: emerge.org.au
WESTERN AUSTRALIA
The ME/CFS Society of WA (Inc)
Address: The Centre for Neurological Support, The Niche, 11 Aberdare Road, Nedlands, Perth WA 6009
Phone: (08) 9346 7477
Fax: (08) 9346 7534
Web: www.mecfswa.org.au
Email: info@mecfswa.org.au

 

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.

 

ME/CFS Documentary "Unrest" Will Premiere At Sundance

International news

Sunday 4 December 2016

 

From Jennifer Brea (via email):

 

Unrest
 

Unrest will premiere at Sundance!

By Jennifer Brea
November 30, 2016

I am thrilled and humbled to announce that our documentary film about M.E. will premiere this January at the Sundance Film Festival. This has been a long, incredible, hard fought, life-destroying, friendship-making, world-changing, horrible, wondrous journey. When I began, I had never made a film. I could barely make it down the stairs most days, let alone leave my house. I didn't know how I was going to get here, but I had the belief and conviction that this story deserved and needed to be told. And that in telling it, we could change our lives. It took three years, 2,593 Kickstarter backers, a dozen amazing partners, an incredible, gifted team of filmmakers, but we’ve done that part. Now, the second part begins.

There are so, so many people to thank. You know who you are and I hold you in my heart every single day. I dedicate this moment and everything extraordinary to the love of my life, Omar.

Read more: http://www.unrest.film/blog/2016/11/30/feature-documentary-unrest-formerly-known-as-canary-in-a-coalmine-to-receive-its-world-premiere-at-sundance-film-festival-january-2017

Sundance announcement of premiere lineup: http://www.sundance.org/blogs/news/competition-and-next-films-announced-for-2017-festival

 

The above originally appeared here.

 
 
 

"Canary In A Coal Mine" Is Now UNREST

International news

Saturday 3 December 2016

 

From the Unrest documentary:

 

Unrest
 

"Canary in a Coal Mine" is now UNREST

By Jennifer Brea
November 29, 2016

We have some big news I want to share: we’re officially changing the name of "Canary in a Coal Mine" to "Unrest." Over the last three years, I’ve grown very attached to the name Canary, but it needed to change and I want to tell you why.

First, one of the defining challenges of this illness has been the horrible name, Chronic Fatigue Syndrome. Doctors, media, coworkers and even loved ones misinterpret us as just being tired, and often even accuse seriously ill patients of being lazy.

The truth is, patients who have been bedridden for years are not tired or lazy or ‘resting’; they are in a constant state of fighting just to be alive. Whether you are mild or severe, you know how hard it can be to push through, day in and day out. Even when we might look like we’re resting, it’s a fight. I wanted a name that represented that struggle. Unrest describes the experience of all of us who are constantly resisting both the limits of our bodies and the larger social stigmas that have held back equal access to treatment and care.

Second, one of the most exciting developments over the last year has been the rise of a global movement of patients and allies coming together to fight for health equality. The folks drawing attention to the are also engaged in a form of unrest. We are attempting to disrupt the status quo that consigns desperately sick people to the margins of medicine and society. Coming together, engaging in collective “unrest” – I wanted to capture some of that spirit in the title, too.

Finally, Unrest represents the hope we all share: that with a real investment in this disease, we can discover the root causes and develop treatments. Then maybe someday we can “un-rest” and get back to our lives.

In 2013, the midst of our Kickstarter campaign, one patient said, “It’s an uprising from our beds.” I’ve returned to that phrase again and again when thinking about how this film might do good in the world. I want people outside of our circles of ME patients, friends and family to see how we, people with so little to spare, are coming together, loving and supporting each other and challenging some of the biggest forces in society. Whether in bed, at work, or outside of government offices, we are in a state of unrest for our health and for justice.

http://unrest.film
http://twitter.com/unrestfilm
http://fb.com/unfrestfilm

 

Full article…

 
 
 

Gold Coast Team Getting Closer To Discovering Test For Chronic Fatigue Syndrome

Australian news

Friday 2 December 2016

 

From Queensland newspaper the Gold Coast Bulletin:

 

Prof Donald Staines and Prof Sonya Marshall-Gradisnik
Prof Donald Staines and Prof Sonya Marshall-Gradisnik.
(Photo: Tim Marsden)
 

Gold Coast team getting closer to discovering test for chronic fatigue syndrom

Gold Coast Bulletin
December 1, 2016
News Corp Copyright 2016

A TEAM of Gold Coast scientists is behind world-first research that will enable doctors to diagnose chronic fatigue syndrome in a matter of days rather than years.

Griffith University’s Professor Don Staines and Professor Sonya Marshall-Gradisnik have been awarded a $4-million grant to be administered during the next five years that will continue research into developing a test leading to drugs that could be used to treat the condition.

 

Full article…

 
 
 

South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants

South Australian news

Friday 2 December 2016

 

From the South Australian Health and Medical Research Institute (via email):

 

SAHMRI
 

South Australian Health and Medical Research Institute (SAHMRI)

Research participants wanted

Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.

Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.

If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.

What is the purpose of this study?

To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.

 

Read more…

 
 
 

Newcastle University Experts In Hunt For "Smoking Gun" Of Chronic Fatigue Syndrome ME

International news

Thursday 1 December 2016

 

From UK newspaper The Northern Echo:

 

Newcastle University
RESEARCH: A team from Newcastle University
is looking for the "smoking gun" of ME research.
 

Newcastle University experts in hunt for "smoking gun" of chronic fatigue syndrome ME

By Tony Kearney, News Editor (North Durham)
November 29, 2016
©Copyright 2001-2016

UNIVERSITY scientists are leading research to develop a simple blood test for the chronic fatigue syndrome ME.

Researchers from Newcastle and Oxford Universities have been awarded £50,000 funding from the ME Association to spend 12 months analysing nearly 300 blood samples, looking at metabolomics – chemical clues that are left behind after changes in cells.

 

Full article…

 
 
 

Ultra Runner Broke Down From Too Much Running

International news

Wednesday 30 November 2016

 

From New Zealand's Stuff:

 

Malcolm Law
Malcolm Law ran 50 mountain marathons in 50 days.
(Photo: Shaun Collins - Cabbage Tree Photography)
 

Ultra runner broke down from too much running

By Sarah Catherall
November 29, 2016
© 2016 Fairfax New Zealand Limited

Nine months ago, ultra runner Malcolm Law reached breaking point, his body shutting down after years of relentless running and back-to-back marathons.

The 55-year-old spent years running daily, often for hours at a time, striding out up to 150 kilometres a week. Last February, Wanaka-based Law donned his trail shoes for his biggest physical challenge yet - running 50 mountain marathons in 50 days, conquering 42kms of peaks a day without a break. Traversing 1650kms, he raised $521,000 for the Mental Health Foundation for his conquest (the fundraiser is still open) and made a documentary, High Five-O. But the hours and kilometres of pounding and pushing his body over the years finally took its toll.

A year after stepping over the finish line, the father of one was diagnosed with chronic fatigue syndrome, brought on from overdoing it. "I really thought I was unbreakable," he recalls. "But I was a basket case."

"I felt very old, very tired, and I had dizzy spells. I had a lot of mysterious aches and pains, headaches, and many and varied symptoms."

 

Full article…

 
 
 

Woman Sleeps For Up To 22 HOURS A Day - But Rare Condition Means She STILL Feels Tired

International news

Tuesday 29 November 2016

 

From UK newspaper the Express:

 

Heather Reed
Heather Reed sleeps for up to 22 hours a day
but she still feels tired
 

Woman sleeps for up to 22 HOURS a day - but rare condition means she STILL feels tired

A WOMAN who suffers from Sleeping Beauty syndrome feels tired all the time despite sleeping for up to 22 hours a day.

By 
Saturday November 12, 2016
Copyright ©2016 Express Newspapers. "Daily Express" is a registered trademark. All rights reserved.

Heather Reed, from Nova Scotia, Canada had to give up her life as a scientist after a cold caused two exhausting conditions.

Over the course of the year there are 8,670 hours - and Heather snoozes for around 8,030 of them.

The 37-year-old said: “It certainly has an impact on my life. I feel like a ghost in my own life.”

Heather has been battling two debilitating conditions - myalgic encephalomyelitis (ME) and Kleine-Levin Syndrome, also known as Sleeping Beauty syndrome - for more than seven years.

Shockingly, her illnesses, which are not believed to be related, developed virtually overnight.

She said: “Before I was sick, I was a conservation biologist working for Parks Canada. I owned my own home and my own car and I was a graduate student. I lived a really active, very mentally and physically engaging life.

 

Full article…

 
 
 

Volunteers Wanted For UniSA Research

South Australian news

Tuesday 29 November 2016

 

From the University of South Australia's Max Nelson (via email):

 

University of South Australia
 

UniSA 2-day testing study

Researchers at the University of South Australia are looking for ME/CFS sufferers and healthy controls aged 18-65 to take part in a study which aims to investigate how non-invasive heart rate measures can be used to monitor post-exertional malaise. The study employs a 2-day maximal testing protocol, which has previously been shown to provide information on post-exertional malaise in ME/CFS patients, and may in addition be able to provide evidence on a reliable biomarker within the ME/CFS population.

Testing will all take place at the University of South Australia High Performance and Exercise Physiology Clinic located at the UniSA City-East campus on the corner of North Terrace and Frome Road. Testing will consist of one short familiarisation session (45 minutes), and two maximal testing sessions (90 minutes each). The maximal testing sessions need to be completed on consecutive days.

 

Read more…

 
 
 

Petition: Australian Disability Support Pension Difficulties

South Australian news

Monday 28 November 2016

 

From the South Australian Labor Party:

 

Hands
 

To the Federal Liberal Government: stop treating sick and frail people with such insensitivity.

Authorised by R. Martin for the ALP SA, 141 Gilles Street, Adelaide SA 5000

The Turnbull Government is making it harder for people to receive the Disability Support Pension.

People with severe, life-long and terminal illnesses and disabilities have 21 days to present Centrelink with extensive medical documentation to re-prove details of their case or risk losing their support.

This punitive, cookie cutter approach is causing huge amounts of stress and fear and could trigger serious mental health episodes in our already vulnerable citizens.

This is a cost-cutting exercise and we are calling on the Commonwealth to change its approach and show some compassion.

You can show your support by signing the petition.

 

The petition…

 
 
 

What It's Like To Have Chronic Fatigue Syndrome, An Illness That Makes You Feel Exhausted All The Time

International news

Monday 28 November 2016

 

From Business Insider Australia:

 

Woman at desk
(Photo: iStock)
 

What it's like to have Chronic Fatigue Syndrome, an illness that makes you feel exhausted all the time

It's not "all in the mind".

Alison Millington
November 16, 2016
© 2007-2016 Allure Media

After months of struggling both mentally and physically to do simple tasks, dealing with a constantly foggy brain and serious exhaustion that wouldn’t go away no matter how much I slept, a doctor told me I had Chronic Fatigue Syndrome (CFS).

Having never heard of it, my response was sceptical, and somewhat annoyed — similar to when you’re told “it’s only a virus” after having a miserable cold for weeks on end.

It felt like a cop-out. But when she told me that there was a chance it would never go away, and the only way to help it was to “avoid exerting too much energy,” I decided to do my research.

That was two and a half years ago. Since then, I’ve learned many things about CFS, including what it is and, just as importantly, what it isn’t.

 

Full article…

 
 
 

More In The News


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