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ME/CFS Australia Ltd
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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: to be announced
Topic: to be announced

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: to be announced
Topic: to be announced
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

 

Dublin Blogger Aisling Chan Vows To Be More Open With Followers As She Reveals She Has A Chronic Illness

International news

Wednesday 17 January 2018

 

From Irish news outlet DublinLive:

 

Aisling Chan
Blogger Aisling Chan
(Image: Instagram/aislingchan)
 

Dublin blogger Aisling Chan vows to be more open with followers as she reveals she has a chronic illness

By Anita McSorley
16 January 2018
© 2017 MGN Limited

A popular Dublin blogger has shared with her followers that she's battling chronic illness fibromyalgia.

Aisling Chan returned to her blog on Sunday after a short break where she focused on improving her health.

The 20-year-old told followers she was inspired to be more honest by the recent controversy in the Irish blogging community.

 

Full article…

 
 
 

International M.E. Advocacy: Action For M.E.'s Latest Project

International news

Wednesday 17 January 2018

 

From Action for M.E.:

 

Action for M.E.
 

International M.E. advocacy: our latest project

Sunday 14 January 2018
© 2018 Iliffe Media Publishing Ltd. All rights reserved.

Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states – including the UK – take action to address the biomedical healthcare needs of people with M.E.

Sonya Chowdhury, Chief Executive, Action for M.E. says, “International advocacy has brought about much-needed change in other illness fields, such as cancer and diabetes. The urgent need for appropriate biomedical care and support for people with M.E. cannot be understated. That we have the opportunity to drive this forward, targeting decision-makers at the highest level, is hugely exciting. It’s a big step for the charity, and our Board of Trustees has carefully considered this considerable investment, which will be regularly reviewed to ensure it delivers benefit for people with M.E.”

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 17 January 2018

 

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

 

PDF

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

 
 
 

Society Seminars For 2018

South Australian news

Tuesday 16 January 2018

 

Here is the list of ME/CFS Australia (SA) Inc's seminars for 2018. Details will be added when they become available:

ME/CFS Australia (SA) Inc
 
 
Saturday 24 March 2018

1:30 pm

Speaker: To be announced

Topic: To be announced

 
 

Saturday 24 June 2018

1:30 pm

Speaker: To be announced

Topic: To be announced

 
 

Saturday 26 August 2018

1:30 pm

Speaker: To be announced

Topic: To be announced

 
 

Saturday 18 November 2018

1:30 pm

Annual General Meeting

Speaker: To be announced

Topic: To be announced

 

Read more…

 
 
 

Stephen Sheds Light On Long Term Illnesses With Album

International news

Tuesday 16 January 2018

 

From UK newspaper the Bury Free Press:

 

Stephen MacLachlan
Stephen MacLachlan, 34, started writing album,
The Glitch, two-and-a-half years after he was
diagnosed with Chronic Fatigue Syndrome in May 2014.
(Photo: Pixabay)
 

Stephen sheds light on long term illnesses with album

Sunday 14 January 2018
© 2018 Iliffe Media Publishing Ltd. All rights reserved.

A man who suffers with a conditon which confines him to his bed for most of the week has made a music album which captures the realities of mental and long term illnesses.

Stephen MacLachlan, 34, started writing the album, called The Glitch, two-and-a-half years after he was diagnosed with Chronic Fatigue Syndrome in May 2014, which saw him bedridden for six months.

“I went from doing six or seven days teaching and working to hitting a brick wall. Lifting a glass of water was the extent of my capabilities,” said Stephen.

“I started writing the album in December 2016 because I just thought, well I have something to say now. Making music has never been a problem but I have just never had anything to write about. Lyrics have never been my strong point. I’ve always written instrumental stuff or written with other people so that was new to me.”

 

Full article…

 
 
 

Researchers Say Hypersensitive Brain Network Causes Chronic Headaches

International news

Tuesday 16 January 2018

 

From US newspaper the Deccan Chronicle:

 

Woman
Hyper-sensitive brain network causes chronic headaches.
(Photo: Pixabay)
 

Researchers say hypersensitive brain network causes chronic headaches

Here is what a new study has found.

By Ani
January 14, 2018
Copyright © 2015 - 2018 Deccan Chronicle.

Washington: A new study has found that brain networks of patients with fibromyalgia primes for rapid and global, responses to minor changes. Fibromyalgia is a disorder characterised by widespread musculoskeletal pain accompanied by memory issues, sleep, fatigue, and memory issues.

It is believed that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. The new research states that hyper-reactive brain networks could play a part in the hypersensitivity of fibromyalgia. This abnormal hyper-sensitivity of brain networks, called Explosive Synchronization (ES), can be observed in other network phenomena as well across nature. The research details only the second study about ES in the human brain.

 

Full article…

 
 
 

Meet Some Of The People Who Volunteer Themselves To Advances In Medical Science At SAHMRI

South Australian news

Monday 15 January 2018

 

From South Australian newspaper the Sunday Mail:

 

Jenny Kinmont, Penelope McMillian, Maddie West, Cecil Camilleri, and Josh Haste
Volunteers Jenny Kinmont, Penelope McMillan,
Maddie West, Cecil Camilleri and
Josh Haste at the SAHMRI.
(Source: News Limited)
 

Meet some of the people who volunteer themselves to advances in medical science at SAHMRI

THEY are the altruistic “guinea pigs” — aged 9 to almost 80 — who advance the cause of medical science by giving their time and insights — not to mention blood and hair samples — for the sole purpose of helping others. Martina Simos reports.

By Martina Simos
Sunday Mail (SA)
13 January 2018
News Limited Copyright © 2018

THEY put their bodies on the line, trial new medicines, submit to tests and answer probing, personal questions — all to help us all lead healthier, happier lives.

Medical research volunteers are a special breed, coming from all ages and walks of life. Beyond recouping a few minor personal expenses, they gain only the satisfaction of serving the greater good.

“Their motivation is entirely selfless and giving,’’ says SAHMRI researcher Dr Michael Musker.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 15 January 2018

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

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

The CONVERSATIONS Project
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 15 January 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…

 
 
 

Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia

South Australian news

Sunday 14 January 2018

 

From PhD candidate Gipsy Hosking (via email):

 

University of South Australia
 

Research participants wanted to develop a creative resource about living with ME/CFS and Fibromyalgia

31 May 2017

Researcher: Gipsy Hosking, PhD Candidate, University of South Australia

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.

If you are interested in taking part or have any questions please contact me at Gipsy.Hosking@myuni.unisa.edu.au or 0408 266 075 or you can message me via the Facebook page www.facebook.com/GHresearch/.

***********************************

DOCX Call for participants plain text.docx (135 KB)

PDF Call for participants flyer.pdf (137 KB)

PDF Participant Info Sheet.pdf (155 KB)

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 14 January 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…

 
 
 

Benefit Mix-Up Forces Mum Back To Work Despite Crippling Illness That Causes Her Extreme Pain And Fatigue

International news

Saturday 13 January 2018

 

From UK newspaper the Mirror:

 

June Peatman
June Peatman says she has been forced back to work
due to a council benefits error
(Image: MEN Media)
 

Benefit mix-up forces mum back to work despite crippling illness that causes her extreme pain and fatigue

June Peatman was told by doctors that she was not fit for full-time work as a care worker last year

By Phil Winter
11 January 2018
© 2017 MGN Limited

A mum says she has been forced back into work despite suffering from a crippling illness because of a benefits mix-up.

Doctors told fibromyalgia-sufferer June Peatman, 46, that she was not fit for a full time job as a care worker last year.

Fibromyalgia causes widespread pain and fatigue, and extreme sensitivity in the body. It can be worsened by stress, and can also affect the sufferer’s sleep.

But June, who moved to Hull in November, says she has been forced to defy doctors orders after a series of errors led to her not receiving housing benefits for two months.

 

Full article…

See also: Hull Daily Mail - Ill Hull mum: 'Benefits mix-up means I can't pay my rent and have to go back to work - despite doctor's orders'

 
 
 

Discovery Forum 2017: Presentation Of Dr. Ian Lipkin, Columbia University

International news

Friday 12 January 2018

 

From the Solve ME/CFS Initiative (via YouTube):

 

Dr Ian Lipkin
Dr Ian Lipkin
 

Discovery Forum 2017: Presentation of Dr. Ian Lipkin, Columbia University

By SolveCFS
Published on 9 January 2018

Solve ME/CFS Initiative’s 2nd Annual Discovery Forum, held on October 14th in Washington DC, brings together leaders from across industry, academia, federal agencies, and biotech companies to tackle the most pressing issues confronting ME/CFS today.

This recording is the full presentation of Dr. Ian Lipkin, John Snow Professor of Epidemiology and Director of the Center for Infection and Immunity and Columbia University.

 

Full article…

 
 
 

The Long And Painful Wait For Medical Cannabis

International news

Friday 12 January 2018

 

From the Times of Malta:

 

Woman
“Wearing a jacket is out of the question
as the pain is unbearable.”
(Photo: Shutterstock)
 

The long and painful wait for medical cannabis

By Sarah Carabott
Wednesday, January 10, 2018
Copyright © 2018 timesofmalta.com

Before the debate on the recreational use of cannabis, Maltese patients, like their fellow Europeans, had already started inquiring about the medical use of the plant. But despite new legislation, they have been left hanging for more than two years and they now fear that the proposed amendments will push prices through the roof, writes Sarah Carabott.

After two decades battling an ailment that “robbed” her of her life, a window of hope opened in Joanne’s life when she heard of medical cannabis treatment for Fibromyalgia.

She went for it by the book – or so she thought. She obtained a recommendation from her GP and two consultant certificates saying her severe fibromyalgia was characterised by constant pain, tiredness and loss of function, and that the condition had not improved despite multiple attempts at treatment.

But when Joanne*, documents in hand, went to pick up her non-psychoactive cannabidiol (CBD) oil, Port Health asked her to obtain a prescription from an oncologist.

However, when she duly turned up again with the prescription, she was told it was missing a stamp. By then she was so exhausted, with her condition bearing down on her, that she gave up and left it with the Customs Department.

 

Full article…

 
 
 

When Sickness Interrupts Science

International news

Thursday 11 January 2018

 

From Nature:

 

Leonard Jason
Leonard Jason
(Credit: DePaul University/Jamie Moncrief)
 

When sickness interrupts science

By Emily Sohn
10 January 2018
© 2018 Macmillan Publishers Limited, part of Springer Nature. All rights reserved.

...

Navigating a research career along with a chronic illness, say many researchers, requires zeroing in on what is most essential.

Leonard Jason, a psychologist who was diagnosed in 1989 with myalgic encephalopathy/chronic fatigue syndrome (ME/CFS), realized that he needed to be strategic about his work and careful not to overtax himself.

His approach has led to recognition, including awards for excellence in research and, at one point, a position on a US federal panel advising about research on ME/CFS.

He recommends that scientists pursue the work that matters most to them.

“The reality is that you can’t do it all,” says Jason, of DePaul University in Chicago, Illinois. “Prioritization is absolutely critical when one is in a diminished state. If it’s trivial and you don’t care about it, let it go.”

 

Full article…

 
 
 

More In The News


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