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ME/CFS Australia Ltd
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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:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-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 the various research projects, diets, medications, therapies 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
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.

Saturday 19 November 2016
1:30pm
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, 1.49 MB)

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)
(PDF, 1 MB)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(English) (PDF, 460 KB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(German) (PDF, 186 KB)

PDF

For Psychiatrists (in English):
CFS: Assessment and Treatment of Patients with ME/CFS – Clinical Guidelines for Psychiatrists
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 460 KB)

PDF

For Psychiatrists (in German):
Chronic Fatigue Syndrom: Diagnose und Behandlung von Patienten mit ME/CFS – Klinische Leitlinien für Psychiater
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 313 KB)

 
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: (08) 8346 3237 or 1300 128 339 for country callers
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

 

 

Coming Soon… Foggy Frog And The Pain Gang Picture Book

South Australian news

Saturday 23 July 2016

 

All people deserve to have their story heard, and those of us with invisible illnesses (some of which aren't even recognised fully in the medical community) deserve to have ours heard too!

One of our members, Megan Schartner, has written and illustrated Foggy Frog and the Pain Gang, a children's book which tells the first part of that story without leaving people out because their illness isn't recognised or they don't have a name for it.

Foggy Frog and the Pain Gang will be available September 2016. Pre-order your copy here to receive 20% off RRP. The book will be launched at Burnside Library on September 24th at 1:30pm.

Facebook page: https://www.facebook.com/FoggyFrogBook/

This is part of a larger campaign to provide a resource for educators everywhere to raise awareness of invisible illnesses in any community and with any age group. See here for more details: http://liveken.com/foggy-frog-campaign/.

From Megan:

 

Foggy Frog
 

Introducing Foggy Frog and Friends

Let me tell you about these creatures that have come to visit me. These are the ones that are causing all the problems and won’t go away.

We’ll start with their leader, Foggy Frog.

Foggy Frog is the one that’s always on my shoulder. He’s weighing me down and makes it feel like I’m pushing through mud whenever I’m trying to do anything. Somehow, he’s also managed to get into my head and muddle everything up. Because of this I have trouble remembering things and can’t focus on anything for more than a few minutes at a time without zoning out.

His constant companions are the Gnawing Gnats.

These guys have completely taken over my body. They are constantly running around nibbling here and there, causing my whole body to ache. Occasionally they bite harder causing my muscle to twitch and shake.

Although Foggy Frog and his Gnawing Gnats have become permanent residents in my body, they are not the ones that cause me the most pain. That award goes to their friends who come to visit quite regularly; almost daily in fact…

 

Read more…

 
 
 

Online Survey: Fibromyalgia – Coping And Functioning

South Australian news

Saturday 23 July 2016

 

From The University of Adelaide's Heather Trainor:

 

The University of Adelaide
 

Fibromyalgia: Coping and Functioning study

Dear Participant,

You are invited to participate in the research project described below.

What is the project about?

The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.

Who is undertaking the project?

This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.

Who is invited to participate?

Participation in this study is open to people who:

  • Have received a diagnosis of Fibromyalgia from a medical practitioner
  • Are Australian residents
  • Are over the age of 18
  • Are proficient in English (no translation services available)

 

Read more…

 
 
 

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

South Australian news

Friday 22 July 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.

 

Full article…

 
 
 

Helen's Woolen Buddies Helping Out

South Australian news

Thursday 21 July 2016

 

From South Australian newspaper the Barossa Herald:

 

Helen Hales and Rose Brooks with lambs Jack and Roger
WOOLEN LOVE: Helen Hales and Barossa Wildlife's
Rose Brooks with lambs Jack and Roger.
 

Helen's woolen buddies helping out.

By Jack Hudson
July 15, 2016
Copyright © 2016. Fairfax Media.

Two lambs have given Lyndoch woman Helen Hales a breath of fresh air in her life, and the energy to get up in the morning after suffering from Chronic Fatigue Syndrome for more than half of her life.

 

Full article…

 
 
 

Putting Best Foot Forward For Charity

South Australian news

Wednesday 20 July 2016

 

From South Australian newspaper the Northern Messenger:

 

Pooraka Primary School
 

Putting best foot forward for charity

By Isabella Fowler
July 20, 2016

Reprinted by kind permission of the Northern Messenger.

POORAKA Primary students had no excuse to be late to school last Friday [8 July 2016], as they headed to class in pyjamas and crazy socks to "sock it to" a nasty illness.

Myalgic encephalomyelitis/chronic fatigue syndrome is considered one of the most "misunderstood invisible diseases" according to ME/CFS Australia committee member Penelope McMillan says.

"A lot of people seem to think it's an old lady illness, but it's actually very destructive for young people and they can end up missing years of school.

The name makes people think it's just a handful of people who are tired, when 25 per cent of sufferers are actually housebound and can barely move," she says.

Pooraka Primary was the only school in SA to respond to requests for fundraising, which will go towards research and treatment trials.

Teacher Deb Foreman says the school put their own twist on the fundraiser.

"The kids voted to wear pyjamas as well as bright socks – which is part of the charity's 'sock it to ME' campaign," Ms Foreman says.

For student Luke, 13, it was the perfect excuse to don his Pikachu onesie.

Pooraka Primary School Crazy Sock / Pyjama Day
Hayley Penhall, 13, Luke Hart, 13, and Teagan Peak, 11 were among the Pooraka Primary School students who took part in the Chronic Fatigue Syndrome fundraiser. (Picture: Campbell Brodie)

 
 
 

UK Group Dedicated To Helping People With 'Invisible Illnesses' Celebrates First Anniversary

International news

Wednesday 20 July 2016

 

From UK newspaper the Gazette:

 

Gazette
 

Group dedicated to helping people with 'invisible illnesses' in Cam and Dursley celebrates first anniversary

A GROUP with the aim of bringing people with ‘invisible illnesses’ together celebrated its first year at GL11 Community Hub in Cam – and the group's founder hopes it will carry on “for many years to come”.

 

Full article…

 
 
 

Concordia College Students Collecting For ME/CFS!

South Australian news

Tuesday 19 July 2016

 

From committee member Penelope Del Fante:

 

Concordia College
 

Concordia College Students collecting for ME/CFS!

A big thank you to Concordia College Principal Lester Saegenschnitter, Student Welfare Worker Jason Kupke, who organised the students and spoke about ME at their assembly, and the five Year 9 students, Bella, Ellie, Georgia, Tara and Perrie who volunteered their time to collect money for the Society and who were an absolute delight to work with.

Thank you also to Unley Shopping Centre for their generous support.

 

Concordia College students
Our President, Emma Wing, with two of the Concordia students

 

Concordia College students

 
 
 

Fibromyalgia Associated With Coronary Heart Disease And Stroke Risk: Study

International news

Monday 18 July 2016

 

From Bel Marra Health:

 

Heart
 

Fibromyalgia associated with coronary heart disease and stroke risk: Study

By Dr. Victor Marchione
Tuesday July 12, 2016

Fibromyalgia is associated with the risk of coronary heart disease and stroke, according to research. The researchers arrived at this conclusion by comparing fibromyalgia patients to individuals without the condition.

 

Full article…

 
 
 

£300,000 Award For UK Charity Supporting People With ME/CFS

International news

Sunday 17 July 2016

 

From UK newspaper the Sutton Coldfield Local:

 

Salus Fatigue Foundation
 

£300,000 award for Sutton Coldfield charity supporting people with devastating condition

July 16, 2016

Linda Jones is celebrating after the Salus Fatigue Foundation, the charity she started from her living room, was awarded over £300,000 through the Big Lottery Fund.

 

Full article…

 
 
 

New Facebook Page: "Tom Kindlon's ME CFS & Related Page: News, Research And More"

International news

Sunday 17 July 2016

 

From Facebook:

 

Tom Kindlon's Facebook Page
 

Tom Kindlon's ME CFS & related page: News, Research and more

9 July 2016

Irish ME/CFS sufferer Tom Kindlon has set up a new Facebook page:

https://www.facebook.com/TomKindlonMECFS

 

Tom Kindlon's ME CFS & Related Page: News, Research And More…

 
 
 

Six Year Study Of Abnormal Brain Changes In Chronic Fatigue Syndrome Patients

Australian news

Sunday 17 July 2016

 

From ME Australia:

 

Brain
 

Six year study of abnormal brain changes in chronic fatigue syndrome patients

By Sasha Nimmo
July 12, 2016

An Australian six year study evaluating progressive brain changes associated with chronic fatigue syndrome (Fukuda and Canadian Consensus Criteria definitions) shows patients’ brains deteriorate at an abnormal rate.

 

Full article…

 
 
 

More In The News


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