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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

Office:
Suite 506,
North Terrace House
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 2018
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: to be announced
Topic: to be announced

Saturday 11 August 2018
1:30pm
Speaker: to be announced
Topic: to be announced

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
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/CFS Primer for Clinical Practioners - 2014 Edition

PDF

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

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
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
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
VIC/TAS/NT
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

 

Radio Interview: ME/CFS - Debunking Medical Myths

South Australian news

Thursday 19 April 2018

 

From South Australian radio station Radio Adelaide:

 

David Tuller
David Tuller
 

ME/CFS – DEBUNKING MEDICAL MYTHS

Posted on: Sunday 15 April 2018

A Conversation between Sue Gilbey, Dr David Tuller, Penelope McMillan & Tania Emms, highlighting the challenges of living with ME/CFS.

Photo used with the permission of Dr David Tuller.

Production by Clayton Werner

 

Full article…

 
 
 

Game Of Thrones And Spiderman 2 Actors Star In Vikings And Vampires Film Being Made In Swansea

International news

Thursday 19 April 2018

 

From Wales Online:

 

Vikings vs Vampires cast
The poster for the new film that has been
shot in south Wales, including Swansea.
(Image: Kat Clatworthy/Eagles Eleven Productions Ltd)
 

Game of Thrones and Spiderman 2 actors star in Vikings and vampires film being made in Swansea

The Gower Heritage Centre and Weobley Castle will feature in the new film

By Christie Bannon, Trainee Multimedia Journalist
17 April 2018
© 2018 Media Wales Ltd

A new film about Vikings and vampires is being made in Swansea and features a Game of Thrones actor.

Vikings vs Vampires: Odin’s Abomination is being produced by an all-Welsh production team called Eagles Eleven Productions Ltd.

Director and project manager, Kat Clatworthy, from Cefn Cribwr near Bridgend, explained that the film revolved around a father and daughter’s relationship, twisted with a horror element of war between Vikings and vampires.

...

If the challenge of directing a film for the first time wasn’t enough, Miss Clatworthy is also battling a condition herself.

She added: “In 2016 I was diagnosed with fibromyalgia so it’s been a bit of a struggle.

“We are filming the making of the film to show people that it’s been very up and down.”

 

Full article…

 
 
 

Epstein-Barr Virus Protein Can "Switch On" Risk Genes For Autoimmune Diseases

International news

Thursday 19 April 2018

 

From the US's National Institutes of Health:

 

Epstein-Barr virions
An electron microscopy image
showing three Epstein-Barr virions.
(NIAID)
 

Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

EBV may trigger some cases of lupus, say NIH-supported researchers.

News Releases
Monday, April 16, 2018
NIH…Turning Discovery Into Health®

Infection with Epstein-Barr virus (EBV), the cause of infectious mononucleosis, has been associated with subsequent development of systemic lupus erythematosus and other chronic autoimmune illnesses, but the mechanisms behind this association have been unclear. Now, a novel computational method shows that a viral protein found in EBV-infected human cells may activate genes associated with increased risk for autoimmunity. Scientists supported by the National Institute of Allergy and Infectious Diseases report their findings today in Nature Genetics.

“Many cases of autoimmune illness are difficult to treat and can result in debilitating symptoms. Studies like this are allowing us to untangle environmental and genetic factors that may cause the body’s immune system to attack its own tissues,” said NIAID Director Anthony S. Fauci, M.D.  “A better understanding of the complex causes of autoimmunity promises to lead to better treatment and prevention options.”

 

Full article…

 
 
 

David Tuller Video Q&A

Australian news

Wednesday 18 April 2018

 

From Josh Roberts on YouTube:

 

David Tuller
David Tuller
 

David Tuller Video Q&A video Call (April 2018)

By Josh Roberts
Published on 11 Apr 2018

Video Q&A with David Tuller on the 10th April 2018.

David Tuller's Twitter page: https://twitter.com/davidtuller1.

Video call was organised by Carla, and video uploaded by Josh.

The group participants are part of the 'Young ME/CFS Australians 18-40' Facebook group: https://www.facebook.com/groups/1559828907642995.

 

 

Full article…

 
 
 

Fibromyalgia No Barrier For Dundee Mum Starting Her Own Business

International news

Wednesday 18 April 2018

 

From Scottish newspaper the Evening Telegraph:

 

Deborah Breen and her two sons
Deborah with her two sons at the awards night.
 

Fibromyalgia no barrier for Dundee mum starting her own business

By David Burroughs
April 16, 2018
© DC Thomson Co Ltd 2018. All Rights Reserved.

Sewing started out as a hobby for Deborah Breen, something she enjoyed doing when her Fibromyalgia wasn’t affecting her too much.

But the Dundee mum-of-two never imagined it was a hobby that could turn into a business.

About a year ago, Deborah crated a bib for her sister’s newborn baby and then began to gift them to friends and family.

Despite suffering from Fibromyalgia, a long-term condition which causes pain all over the body, and a range of other illness, Deboarah decided to focus her time and effort into the sewing.

She said there were a lot of people with various illnesses who had decided there wasn’t much they could do, but she was determined that wouldn’t be the way she looked at life.

...

She enrolled in the Certificate in Textiles at Dundee and Angus College, who encouraged her to take part in the Enterprise Dragons event where participants had to convince a panel of judges their business idea would work.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 18 April 2018

 

ME/CFS Society (SA) IncThe society's constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 154KB)

 
 
 

Trial By Error: Two Interview Podcasts, And "Conflicts of Interest"

International news

Tuesday 17 April 2018

 

From Virology Blog:

 

David Tuller
David Tuller
 

Trial By Error: Two Interview Podcasts, and “Conflicts of Interest”

By David Tuller, DrPH
Monday 16 April 2018

For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message:

On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link below identifies me as being from Berkley University.)

And last Wednesday, before flying from Adelaide to Perth, I was interviewed for a podcast on Radio Adelaide, along with long-time ME/CFS patients Penelope McMillan and Tania Emma. The podcast was posted on Sunday.

 

Full article…

 

The Perth 6PR882 Talk Radio podcast:

 

 
 
 

Opinion: I'm Struggling, Even If You Can't Tell – A Different View Of Chronic Fatigue Syndrome

Australian news

Tuesday 17 April 2018

 

From SBS's The Feed:

 

The Feed
 

OPINION: I’M STRUGGLING, EVEN IF YOU CAN’T TELL – A DIFFERENT VIEW OF CHRONIC FATIGUE SYNDROME

When Tiah Gordon watched The Feed’s investigation ‘Fighting Disbelief: Chronic Fatigue Syndrome and the NDIS’ what she saw did not reflect her experience with the illness – an invisible but still debilitating condition.

By Tiah Gordon
Monday 16 April 2018
© SBS

Let me say this right off the bat: I’m not writing this to draw attention to me and my struggles.

I’m writing this on behalf of the majority of people living with ME/CFS. I feel I can say that because the severity of my condition more accurately represents the typical experience of ME/CFS than the examples in The Feed’s investigation.

 

Full article…

 
 
 

Fighting Disbelief: Chronic Fatigue Syndrome

Australian news

Monday 16 April 2018

 

From SBS's The Feed (via YouTube):

 

The Feed
 

Fighting Disbelief: Chronic Fatigue Syndrome

The Feed
Published on 4 Apr 2018

We used to think Chronic Fatigue Syndrome was imaginary. Now we know better. So why is it still so hard to get support from the NDIS?

 

 

Full article…

 
 
 

Weighting Of Orthostatic Intolerance Time Measurements With Standing Difficulty Score Stratifies ME/CFS Symptom Severity And Analyte Detection

International news

Monday 16 April 2018

 

From the Journal of Translational Medicine:

 

Journal of Translational Medicine
 

Weighting of orthostatic intolerance time measurements with standing difficulty score stratifies ME/CFS symptom severity and analyte detection

Alice M. Richardson, Don P. Lewis, Badia Kita, Helen Ludlow, Nigel P. Groome, Mark P. Hedger, David M. de Kretser and Brett A. Lidbury
Journal of Translational Medicine 201816:97
https://doi.org/10.1186/s12967-018-1473-z | © The Author(s) 2018
Received: 26 October 2017 | Accepted: 5 April 2018 | Published: 12 April 2018

Abstract

Background

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is clinically defined and characterised by persistent disabling tiredness and exertional malaise, leading to functional impairment.

Methods

This study introduces the weighted standing time (WST) as a proxy for ME/CFS severity, and investigates its behaviour in an Australian cohort. WST was calculated from standing time and subjective standing difficulty data, collected via orthostatic intolerance assessments. The distribution of WST for healthy controls and ME/CFS patients was correlated with the clinical criteria, as well as pathology and cytokine markers. Included in the WST cytokine analyses were activins A and B, cytokines causally linked to inflammation, and previously demonstrated to separate ME/CFS from healthy controls. Forty-five ME/CFS patients were recruited from the CFS Discovery Clinic (Victoria) between 2011 and 2013. Seventeen healthy controls were recruited concurrently and identically assessed.

Results

WST distribution was significantly different between ME/CFS participants and controls, with six diagnostic criteria, five analytes and one cytokine also significantly different when comparing severity via WST. On direct comparison of ME/CFS to study controls, only serum activin B was significantly elevated, with no significant variation observed for a broad range of serum and urine markers, or other serum cytokines.

Conclusions

The enhanced understanding of standing test behaviour to reflect orthostatic intolerance as a ME/CFS symptom, and the subsequent calculation of WST, will encourage the greater implementation of this simple test as a measure of ME/CFS diagnosis, and symptom severity, to the benefit of improved diagnosis and guidance for potential treatments.

Keywords

Activins, Pathology, Analytes, Biomarkers, CFS ME, Standing time, Orthostatic intolerance

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 16 April 2018

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

Consumer Expectations & Experiences of the Health Care System – An International Study

The CONVERSATIONS Project
Originally published January 30, 2017

Do you want your voice to be heard?

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.

The survey can be found at https://www.surveymonkey.com/r/CONVERSATIONS-2016.

For more information go to www.conversations-project.info.

#MECFS #MECFSResearch

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 16 April 2018

 

ME/CFS Australia (SA) Inc
 

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.

 

Read more…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 15 April 2018

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

Jake Bailey started this petition to Minister for Veterans' Affairs Hon. Dan Tehan MP and 3 others
1 March 2018
Copyright © 2018 BBC

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.

 

Full article…

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 15 April 2018

 

From Change.org:

 

WRC
 

STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA

By Stephany Del Canto
1 June 2017

© 2017, Change.org, Inc.
Certified B Corporation

AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE

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.

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 14 April 2018

 

Order your new Enteraintment Membership!

Dear Friends,

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.

Where to buy:

- At our next Seminar
- Online at https://www.entertainmentbook.com.au/orderbooks/167c042
- For hard copy books (as opposed to digital copies), pay a bit extra for delivery or collect from Parkside – Ph: 1300 128 339 – or email pdelfante@sacfs.asn.au to make arrangements.

 

"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

 

Entertainment Book

 
 
 

How Sporty, Active Sarah's Life Changed When ME Struck

International news

Friday 13 April 2018

 

From UK newspaper the Loughborough Echo:

 

Sarah and Andy Reed
Sarah is pictured here with her husband,
former Loughborough MP Andy Reed.
 

How sporty, active Sarah’s life changed when ME struck

A former speech and language therapist, Sarah was in her mid-twenties when she was diagnosed with the illness in 1996. She made a near full recovery, but five years ago suffered a relapse.

By Andy Rush, Editor
Thursday 12 April 2018
© 2018 Trinity Mirror Midlands

SARAH Reed, the wife of former Loughborough MP Andy Reed, has talked publicly for the first time about the chronic illness that left her so exhausted she could not get out of bed – even when she thought their house was being burgled.

Sarah was speaking ahead of a screening of a highly acclaimed documentary in the town next month.

The film, Unrest, which was shortlisted for an Oscar, highlights the devastating and life-changing effect Myalgic Encephalomyelitis (ME) has on the lives of patients and their loved ones.

 

Full article…

 
 
 

Disabled Welshman 'Feared For His Life' While Visiting Town

International news

Friday 13 April 2018

 

From Welsh newspaper Cambrian News:

 

Dean Shaw with grandson Ellis
Dean Shaw with grandson Ellis
 

Disabled man ‘feared for his life’ while visiting town

By Alex Jones - Meirionnydd, Arfon & Dwyfor reporter
Thursday, 12 April 2018
Independent Family-Owned Newspapers · Copyright & Trade Mark Notice & 2013 - 2018 · Owned or licensed to Tindle Newspapers Ltd.

A DISABLED grandfather is demanding an apology from Gwynedd Council after his seaside break with his grandson was ruined due to little or no disabled access, he claims.

Dean Shaw – who uses a mobility scooter as he suffers with Fibromyalgia, CFS (Chronic Fatigue Syndrome) and Osteoporosis – says he was aghast to find almost no provision for disabled people in Barmouth and “feared for his life” as he was forced to go onto the road and dodge traffic.

 

Full article…

 
 
 

US Congress To Hear From An Army Of Very Sick Petitioners

International news

Friday 13 April 2018

 

From US news outlet InsideSources:

 

Capitol Building, Washington
 

Congress to Hear From an Army of Very Sick Petitioners

By Llewellyn King
Thursday April 12, 2018
Copyright 2017 © InsideSources, LLC. All Rights Reserved.

A different voice will be heard on Capitol Hill on May 12 to 15: a gentle, sad voice coming not from lobbyists or politicos but from an irregular army of sick people. It is a voice that has grown stronger in recent years but is still just a zephyr among the hurricane winds that blow in Congress. For Congress, it will be an invasion of sighs.

They will be on the Hill to petition their government for more research funding for the disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

They will not be coming with checks for campaign coffers, nor with partisan arguments, but simply to make their case that the federal government should put ME on a par with diseases of similar devastation and increase the minuscule funding. They also want Congress to use its bully pulpit to preach a message of urgency and need.

 

Full article…

 
 
 

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