Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
   
Become a Member
PDF Application Form (PDF, 242KB)
Why become a member?

Facebook
 
 
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 2017
Saturday 8 April 2017
1:30pm
Speaker: David Mitchell
Topic: What do genes, hormones and supplement insufficiencies have to do with ME/CFS?

Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek
Topic: Brain structural changes in ME/CFS – recent research findings

Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017

Saturday 18 November 2017
Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
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

 

Blackpool Hotelier Singing For M.E. In Name Of Love

International news

Tuesday 5 December 2017

 

From UK news outlet The Gazette:

 

James Reay and Simon Dooley
James Reay and Simon Dooley from the
Clarendon Showtel with their single
 

Blackpool hotelier singing for M.E. in name of love

By Wes Holmes
Monday 11 December 2017
©2017 Johnston Publishing Ltd. All rights reserved.

A Blackpool hotelier sang his heart out in the hope of supporting research into a debilitating condition that struck down his once healthy partner.

Clarendon Showtel owner James Reay’s partner of 16 years, Simon Dooley, 41, was diagnosed with chronic fatigue syndrome (M.E.) three years ago after falling and hitting his head during an onstage performance.

Now the pair have worked together to release a winter single to raise money for Action For ME.

Just Let Me Cry’, performed by James, 50, will be released on all major music sites on December 27 with the ambitious aim of raising £250,000 - £1 for every M.E. sufferer in the UK.

 

Full article…

 

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 5 December 2017

 

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

 
 
 

Inkersall Sisters Speak Out On Living With Fibromyalgia

International news

Monday 11 December 2017

 

From UK radio station Peak FM:

 

The Lakin sisters
The Lakin sisters
 

Chesterfield women fight to get 'debilitating illness' officially recognised as a disability

By Peak FM
Monday, March 6th, 2017
© 2017 Wireless Group & Aiir

Three sisters from Inkersall have told Peak FM of their struggle in coping with a genetic condition known as fibromyalgia.

Adrienne Lakin, Sarah Lakin and Leanne Marie Lakin all suffer from the condition, and they sat down and told Peak FM the harrowing details of their struggle to cope with it, and their fight to get the issue discussed in parliament.

So far they have received more than 10,000 signatures but require around 100,000 to get MP's to discuss it.

...

LISTEN: Three Chesterfield sisters discuss the difficulty of living with Fibromyalgia.

They have also set up a website and Facebook page to raise extra awareness of the condition, both of which are filled with information on the girls' campaign.

The petition to get Fibromyalgia discussed in parliament can be found here.

 

Full article…

 
 
 

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

South Australian news

Monday 11 December 2017

 

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…

 
 
 

Unrest Screening Sponsors

South Australian news

Sunday 10 December 2017

 

We would like to pay a special thanks to the nine South Australian sponsors who so very generously supported our recent event, the Adelaide premiere of the award-winning documentary, Unrest, on 9 November 2017:

University of South Australia

Thanks to member Gipsy Hosking (Invisible Illness Warriors) for getting the generous sponsorship of University of South Australia's School of Psychology, Social Work and Social Policy, who arranged the wonderful auditorium and paid for the film rights. Special thanks also to the staff at City West Campus who assisted with the premises, IT and security.

 

absCreative Professional Photography

Thank you to Andrew Beveridge of absCreative Professional Photography (ph: 0488 019 911) for your generosity in being our photographer for the night. Andrew supplied a fantastic selection of photos, some of which ended up in the online Advertiser.

 

Auto Paint Scratch & Chip Repairs

Thank you to Jaz from Auto Paint Scratch & Chip Repairs for a generous raffle prize. You can contact Jaz on 0410 331 546 to discuss your car paint repair needs.

 

Broughton Rainbow Quilters

With thanks to the Broughton Rainbow Quilters for their generous donation of a beautiful quilt won by a very lucky raffle participant.

 

ChiPT

Thanks to former Adelaide Crow, Kris Massie, for his very generous donation of 36 gift vouchers from ChiPT (choose holistic inspiring personal training) which were part of the raffle prizes. (ph: 0402 900 107)

 

Drakes Supermarkets / Foodland

We thank South Australian-owned Drakes Supermarkets for their very kind sponsorship in providing a discounted price on the food platters, which were well received by our audience.

 

Drakes Supermarkets / Foodland

Thank you to members Jane Rasmussen, Lynn Newham and Melanie Kerber from the Ladybirds for providing a wonderful backdrop of ukulele and song for us on the night.

 

Masterplan

Thank you to Simon Tonkin and Masterplan (ph: [08] 8193 5600) for your generous support in providing printing of the handouts for the evening.

 

Mocadunda

Thank you Darius and Ben for making our event sparkle with your very generous donation of wines from Mocandunda. (ph: 0423 670 946)

 

 
 
 

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

South Australian news

Sunday 10 December 2017

 

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 10 December 2017

 

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…

 
 
 

Unrest Documentary On Oscars Shortlist

International news

Saturday 9 December 2017

 

From The Academy of Motion Picture Arts and Sciences:

 

90scars
 

15 DOCUMENTARY FEATURES ADVANCE IN 2017 OSCAR® RACE

Thursday, December 7, 2017

The Academy of Motion Picture Arts and Sciences today announced that 15 films in the Documentary Feature category will advance in the voting process for the 90th Academy Awards®. One hundred seventy films were originally submitted in the category.

The 15 films are listed below in alphabetical order by title, with their production companies:

Abacus: Small Enough to Jail,” Mitten Media, Motto Pictures, Kartemquin Educational Films and WGBH/FRONTLINE

Chasing Coral,” Exposure Labs in partnership with The Ocean Agency & View Into the Blue in association with Argent Pictures & The Kendeda Fund

City of Ghosts,” Our Time Projects and Jigsaw Productions

Ex Libris – The New York Public Library,” Ex Libris Films

Faces Places,” Ciné Tamaris

Human Flow,” Participant Media and AC Films

Icarus,” Netflix Documentary in association with Impact Partners, Diamond Docs, Chicago Media Project and Alex Productions

An Inconvenient Sequel: Truth to Power,” Paramount Pictures and Participant Media

Jane,” National Geographic Studios in association with Public Road Productions

LA 92,” Lightbox

Last Men in Aleppo,” Larm Film

Long Strange Trip,” Double E Pictures, AOMA Sunshine Films and Sikelia

One of Us,” Loki Films

Strong Island,” Yanceville Films and Louverture Films

Unrest,” Shella Films and Little by Little Films

 

Full article…

 

 
 
 

My Fibromyalgia Christmas Wish List

International news

Friday 8 December 2017

 

From Fibromyalgia News Today:

 

Christmas presents
 

My Fibromyalgia Christmas Wish List

By Robin Dix
December 5, 2017
Copyright © 2013-2017 All rights reserved.

This holiday season, I would like to share a list of things that those of us with fibromyalgia would appreciate being given for Christmas. These are items that truly would make our lives easier and a bit more fun.

General items or services

Pajamas: Anything soft and tagless. Something that looks less like pj’s and more like loungewear. Amazon has some great choices. I know a lot of us women live in our pj’s, so it’s super-important that they be soft and comfortable.

 

Full article…

 
 
 

UniSA Pacing Study Recruitment

South Australian news

Friday 8 December 2017

 

From the University of South Australia (via email):

 

Wrist device
 

Participants sought for pacing study

The world's first ME/CFS activity study using heart rate monitors to track safe activity levels is taking place in Adelaide. This is an exciting opportunity to get some objective measurement, through heart rate, of how our bodies cope when we are physically active.

Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.

The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.

The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.

If you are 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games, you might like to be part of this innovative study. For further information, contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph. [08] 8302 1365). People who cannot tolerate more than five minutes of moving images (e.g. TV) should not apply.

We look forward to hearing from you.

Kind regards,

Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia

 
 
 

Open Medicine Foundation Commits $1.2M To Fund ME/CFS Research

International news

Thursday 7 December 2017

 

From GenomeWeb:

 

Dr Ron Davis
Dr Ron Davis, leader of The ME/CFS
Collaborative Research Center at Stanford.
 

Open Medicine Foundation Commits $1.2M to Fund ME/CFS Research

By staff reporter
December 5, 2017
Copyright © 2017 GenomeWeb LLC. All Rights Reserved.

NEW YORK (GenomeWeb) – The Open Medicine Foundation (OMF) announced today that it has committed $1.2 million to fund the first year of operations at the newly established ME/CFS Collaborative Research Center at Stanford University.

According to the OMF, the center is focused on investigating the molecular basis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as well as developing new diagnostics and treatments for the conditions. Its initial projects involve sequencing single T cells to understand the immunological basis of ME/CFS; analyzing sets of genomic and other omics data to define patient subgroups, uncover disease biomarkers, and identify potential drug targets; and developing a blood-based ME/CFS diagnostic that can also be used as a reporter in drug screening.

 

Full article…

 
 
 

Duterte Nominates Miriam Santiago For Highest Civil Service Award

International news

Thursday 7 December 2017

 

From ABS-CBN News:

 

Former Senator Miriam Defensor Santiago
Former Senator Miriam Defensor Santiago.
(File Photo)
 

Duterte nominates Miriam Santiago for highest civil service award

By Dharel Placido, ABS-CBN News
December 6, 2017
© 2017 ABS-CBN Corporation. All Rights Reserved.

MANILA - President Rodrigo Duterte has nominated the late Senator Miriam Defensor Santiago for Quezon Service Cross, the highest award the republic accords its civil servants.

...

Santiago, known for her fiery and impassioned interpellations at the Senate and funny pickup lines in speeches, spent much of her life in public service. She died at the age of 71 on September 29, 2016.

Santiago was the first Filipino to be elected judge of the International Criminal Court (ICC), based in The Hague, Netherlands, in 2011. She, however, let go of her post in 2014 due to chronic fatigue syndrome.

 

Full article…

 
 
 

People With Illnesses Talk About The Symptom They Shouldn't Have Ignored

International news

Wednesday 6 December 2017

 

From US news outlet VICE:

 

Man sneezing
A stock photo of a guy sneezing.
(Photo: Andriy Popov / Alamy Stock Photo)
 

People with Illnesses Talk About the Symptom They Shouldn't Have Ignored

If you think you might be sick, here's an idea: Ask a doctor what they think.

By Ruth Faj
December 5, 2017

This article originally appeared on VICE UK.

Ignore it, and it'll go away—the approach many of us take to medical symptoms, nascent ailments, and the strange dotty rashes we find all over our extremities. It's fairly obvious that this is not the best approach to take. If you think something's wrong, get it checked out—it could be the difference between a speedy recovery and something much worse. Of course, this is one of the reasons lots of us choose to do nothing: Denial is easier than acceptance.

"To have to endure the symptoms [while also not knowing what illness] they may have definitely can come under 'ignorance is bliss,'" explains Dr. Julie Scheiner, a psychologist who specializes in behavioral therapy. "People are frightened of the things they don't understand, so ignoring symptoms may be easier to deal with than potentially having to grieve for something that may be worse to come. It’s a defense mechanism."

I spoke to four people who did exactly that, before being diagnosed with serious illnesses.

...

Max Tuck, Chronic Fatigue Syndrome and Epstein Barr Virus

Why, oh why, did I ignore my grinding exhaustion? I used to ask myself often. That’s what you do when you get diagnosed with an illness that alters life as you know it. For me, it was because I was busy—busy running the rat race. There wasn’t time to be tired. So I kept going, even though my body was saying otherwise.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 6 December 2017

 

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

 

PDF

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

 
 
 

More In The News


Home | Welcome | In the News | ME/CFS Australia (Victoria) | The Society | Become a member | About ME/CFS | Medical | Links | Multimedia | Contact the Society | Volunteer positions
Copyright © ME/CFS Australia (SA) Inc
www.sacfs.asn.au
Privacy Policy
Email: sacfs@sacfs.asn.au
Site maintained by Peter Scott