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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:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: 1300 128 339

Office Hours:
Wednesdays, 10am-3pm


FIBROMYALGIA HELP:
Contact
Fibromyalgia SA
at the
Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711

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 2015
Saturday 14 February 2015
1:30pm
Speaker: Dr Roger Spizzo, from Prospect Medical Centre
Topic: "The Fatigue Spectrum and the Gut"
Saturday 13 June 2015
1:30pm
Speaker: Skye Cibich, from Adelaide Exercise Physiology
Saturday 8 August 2015
1:30pm
Saturday 14 November 2015
Annual General Meeting
1:30pm
Speaker: Dr Peter Tunbridge
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
NATIONAL
ME/CFS Australia Ltd
Address: PO Box 7100 Dandenong VIC 3175
Phone: (03) 9793 4500
Fax: (03) 9793 1866
Web: www.mecfs.org.au
Email: ceo@mecfs.org.au
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: c/o SHOUT, 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 Society of NSW Inc
Postal address: PO Box 5403, West Chatswood NSW 1515
Office address: Suite 204, 10 Help Street, Chatswood NSW 2067
Phone: (02) 8006 7448
Web: www.me-cfs.org.au
Email: admin@me-cfs.org.au
NEW SOUTH WALES
The ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
NORTHERN TERRITORY
ME/CFS Australia (Northern Territory)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-nt.org.au
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
Address: 266 Port Road, Hindmarsh SA 5007
Phone: (08) 8346 3237 ('834 MECFS')
Support line: (08) 8346 3237 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
TASMANIA
ME/CFS Australia (Tasmania)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-tas.org.au
VICTORIA
ME/CFS Australia (Victoria)
Office address: 2/240 Chapel Street, Prahran, VIC, 3181
Postal address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-vic.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

PDF

List of Australian ME/CFS organisations
(PDF, 19 KB)

Word

List of Australian ME/CFS organisations (Word, 41 KB)

 

 

Misdiagnosis On A Grand Scale?

International news

Saturday 30 May 2015

 

From ME Research UK:

 

Stethoscope
 

Misdiagnosis on a grand scale?

Around 190,000 people have a diagnosis of MECFS in the UK, and there are approximately 9,300 newly diagnosed cases each year. Yet, how valid a diagnosis of ME/CFS really is depends crucially on the rigour of the initial clinical assessment, and the efforts made to exclude other treatable conditions that might be causing the collection of symptoms. If the examination is cursory – and if the clinician is sceptical, alienated or just plain disinterested – the “diagnosis” can easily become a convenient lay-by for clinically complex cases that don’t fit into any other category.

Every year ME Research UK gets about 400 calls or e-mails from patients. A small number of these – not a flood, but a regular trickle – are from patients reporting that they have improved after being re-diagnosed with and treated for another condition. These conditions have included Addison’s disease, multiple sclerosis, sleep apnoea, primary mitochondrial disease, primary liver disease and paranoid schizophrenia – and in every case the caller has been content with the re-diagnosis and/or the new treatments it has brought.

So, there is certainly anecdotal evidence that something is amiss with the diagnosis of ME/CFS at the GP surgery. Thanks to two good scientific papers from reputable clinical research groups in the UK, we now have formal research evidence to back up these patients’ anecdotes.

Read more…

 
 
 

Australian Study Pinpoints Possible Gene Issues In Chronic Fatigue Syndrome

International news

Friday 29 May 2015

 

From Health Rising:

DNA
 

Australian Study Pinpoints Possible Gene Issues in Chronic Fatigue Syndrome

By Cort Johnson on May 22, 2015

“Key transducers of nociception and pain”

Much of the activity in nerve cells is regulated by very small channels that regulate the flows of ions such as calcium, sodium and magnesium in or out of the cells.

Given the central nervous system problems in ME/CFS and FM and the clear role ion channels in producing increased sensitivity to pain and stimuli, they would seem to be an obvious target for researchers! This study, though – from the NCNED Australian group – is the first to concentrate on them in ME/CFS.

Read more…

 
 
 

Beckie Butcher's 2012 Book To Be Presented At 2015 LA Pitchfest Event

International news

Thursday 28 May 2015

 

From Broadway World:

 

My Battle with Chronic Fatigue Syndrome
 

Beckie Butcher's 2012 Book to Be Presented at 2015 LA Pitchfest Event

By Book News Desk
May 26, 2015

ELGIN, Illinois:

Centers for Disease Control and Prevention has estimated more than 1 million Americans suffer from chronic fatigue syndrome(CFS). It's a reality Beckie Butcher understands all too well. In her book, "My Battle with Chronic Fatigue Syndrome" (published by iUniverse), Butcher gives an intimate and inspiring account of having this physically and emotionally taxing disorder.

"A lot of people suffer from this serious but misunderstood disease," states Butcher. "It's real, but a lot of people don't believe it is. Some even dismiss it."

In "My Battle with Chronic Fatigue Syndrome," Butcher details how CFS affected her life, sharing her intense and emotional journey. She chronicles the entire experience, beginning with her first symptoms and ending with her physical, spiritual, and emotional recovery.

Read more…

 
 
 

New Group Intervention Program Improves Self-Management Of Fibromyalgia

International news

Wednesday 27 May 2015

 

From Fibromyalgia News Today:

 

Woman
 

New Group Intervention Program Found to Improve Self-Management of Fibromyalgia in Patients

By Patricia Silva, PhD
May 19th, 2015

A study recently published in the journal PLoS One showed that a group intervention program called PASSAGE was effective in helping patients with fibromyalgia cope with the disease. The study is entitled “Multicomponent Interdisciplinary Group Intervention for Self-Management of Fibromyalgia: A Mixed-Methods Randomized Controlled Trial” and was conducted by researchers at different Canadian universities and research centers.

A study was previously established in 2007 that combined educational/psychological tools and exercise therapy for self-management of fibromyalgia. Now, researchers have developed a more structured, multicomponent, interdisciplinary group intervention program for the self-management of fibromyalgia based on the ISF – the PASSAGE Program (Programme d’Apprentissage de StratégieS d’Auto-Gestion Efficaces – Training Program of Efficient Self-Management Strategies; Trial Number Register ISRCTN14526380).

Read more…

 
 
 

Examination Of Single Nucleotide Polymorphisms In Transient Receptor Potential Ion Channels

International news

Tuesday 26 May 2015

 

From ProHealth:

ProHealth
 

Examination of Single Nucleotide Polymorphisms (SNPs) in Transient Receptor Potential (TRP) Ion Channels in Chronic Fatigue Syndrome Patients

By Sonya M. Marshall-Gradisnik et al.
www.ProHealth.com
May 20, 2015

By Sonya M. Marshall-Gradisnik et al.

Abstract

Background: The transient receptor potential (TRP) superfamily in humans comprises 27 cation channels with permeability to monovalent and divalent cations. These channels are widely expressed within humans on cells and tissues and have significant sensory and regulatory roles on most physiological functions. Chronic fatigue syndrome (CFS) is an unexplained disorder with multiple physiological impairments.

Objectives: The purpose of this study was to determine the role of TRPs in CFS.

Read more…

 
 
 

Isabel's Story Of A Life Worth Living

International news

Monday 25 May 2015

 

From UK newspaper, Essex's Daily Gazette:

Isobel Walter
ME sufferer Isabel Walter
 

Isabel's story of a life worth living

by Wendy Brading, News Editor / Specialist News Reporter, May 21 2015
First published Tuesday 19 May 2015 in Local News

ISABEL Walter lies in bed, the curtains closed – the light is too much for her to cope with.

She is bedbound. Her world is confined to the four walls of her bedroom, limited by the chronic and debilitating condition ME.

Every day, she suffers from nausea, headaches, fevers and intense fatigue.

Isabel, who was an academic researcher, is unable to watch TV or to use a computer. She cannot listen to music or the radio.

During her day, she will eat three meals, brought to her by her husband, Paul Hibbard.

On a good day, she may write a few notes about her life which she hopes one day, although in several years, may become a book.

Read more…

 
 
 

Old Acquaintances Catch Up, Discover Shared Rare Disease At Support Meeting

International news

Sunday 24 May 2015

 

From New Zealand newspaper The Dominion Post (via Stuff.co.nz):

Graham Cozens (left) and Paul Clegg
Old acquaintances
Graham Cozens, left, and
Paul Clegg, who met at a
support group for people
with ME after 20 years.
(Photo: Joel Maxwell)
 

Old acquaintances catch up, discover shared rare disease at support meeting

When Graham Cozens saw Paul Clegg, it took a few moments but he eventually remembered they'd known each other back in the day, 20 years ago, when they had the strength to be young and strong.

The pair spoke to raise awareness of the disease ME, affecting about two to four per 1000 people, and a regional support group to help deal with it.

Clegg said only half jokingly that he joined the group through desperation.

"The whole support thing is really interesting. When you talk to people whose lives have descended into the same mess as I've got... and to actually sit down and talk to people who can just rattle off these bizarre things that happen to you, and it makes sense to everybody."

Read more…

 
 
 

ME/CFS Sufferer Rachel To Participate In HBF Run For A Reason

Australian news

Saturday 23 May 2015

 

From the ME/CFS and Lyme Association of WA and HBF Run For A Reason:

Rachel Goodsell and Matteo
Rachel Goodsell and Matteo
 

HBF Run For A Reason

Presented by The West Australian

Help support Rachel and raise funds for the ME/CFS and Lyme Association of WA, in the 2015 HBF Run For A Reason. Rachel will be participating in the 4km walk on Sunday the 24th of May.

"I'm walking for ME/CFS in the HBF Run for a Reason this year. I hope to raise not only money, but also awareness, because I dream of the day when I can announce my condition to the world and the world says, 'I believe you and support you.' "
– Rachel Goodsell

Read more…

 
 
 

For previous news items, visit our full “In the News” archive:

In the News


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