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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)

 

 

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…

 
 
 

Doctors Urged To Take Chronic Fatigue Syndrome More Seriously

International news

Saturday 23 May 2015

 

From CBS News:

Christine Lisio
Christine Lisio
 

Doctors urged to take chronic fatigue syndrome more seriously

By ASHLEY WELCH
CBS NEWS
May 15, 2015, 6:22 PM

Up to 2.5 million people in the U.S. live with chronic fatigue syndrome, a condition defined by extreme exhaustion that does not go away with rest. Patients may experience difficulty sleeping, problems with memory and concentration, headaches and joint pain. But many patients feel like doctors don't take their concerns seriously. A recent report from the Institute of Medicine (IOM) hopes to change that.

Christine Lisio suffers from exhaustion and body aches from chronic fatigue syndrome, but getting the right diagnosis wasn't easy. Doctors would often say, "She's just tired, you know," Lisio told CBS News. "She's got two kids. All the labs look good so you must be fine."

Patients like Lisio hope the IOM report, which states that chronic fatigue syndrome is a legitimate and serious disease, will get doctors to pay closer attention to their concerns.

"It says the disease is real," Dr. Gary Kaplan of the Kaplan Center for Integrative Medicine explained. "That is the most critical piece. Secondly, it gives some clear guidelines for physicians to make the diagnoses."

Read more…

 
 
 

Strong Correlation Discovered Between Fibromyalgia Pain And Quality Of Sleep

International news

Friday 22 May 2015

 

From MD Magazine:

Woman in bed
 

Strong Correlation Discovered Between Fibromyalgia Pain and Quality of Sleep

Caitlyn Fitzpatrick
Conference Coverage > APS 2015
May 14, 2015

Not only does poor sleep result in more pain for fibromyalgia (FM) patients, but it is also linked to a lower pain threshold.

Lead author Maren Hyde-Nolan, PhD, and her Wayne State University colleagues used 90 FM patients, ages 21 through 84, to determine the relationship between the factors. The findings were presented at the 34th Annual American Pain Society Scientific Meeting in Palm Springs, CA. “Fibromyalgia patients tend to have more restless sleep,” Hyde-Nolan told MD Magazine.

For one part of research, the subjects self-reported their pain levels as well as sleep patterns, including when they fell asleep and how long they think they slept for. Depression and pain catastrophizing were also taken into consideration. “People were fairly accurate in reporting when they fell asleep and how they slept,” Hyde-Nolan confirmed. “Interestingly enough, what they reported themselves was more predictable than the objective data.”

Read more…

 
 
 

Post-Exertional Malaise Questionnaire

International news

Thursday 21 May 2015

 

From DePaul University:

Questionnaire
 

Post-Exertional Malaise Questionnaire

Information Sheet for Participation in Research Study

Defining Post-exertional Malaise for ME and CFS

Principal Investigators: Stephanie McManimen, Center for Community Research

Institution: DePaul University, USA

Faculty Advisor: Leonard Jason, Ph.D., Center for Community Research

Research Team: Yolonda Williams, Ph.D.

We are conducting a research study because we are trying to learn more about what occurs before and during post-exertional malaise for individuals with Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), as well as how these individuals define the term post-exertional malaise. We are asking you to be in the research because you have a diagnosis of ME or CFS, speak English, and are 18 years of age or older. If you agree to be in this study, you will be asked to complete a survey. The survey will include questions about your post-exertional malaise experiences related to your ME or CFS. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, income, level of schooling, disability information, and work status. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.

This study will take about 30 minutes of your time. Research data collected from you will be anonymous.

Read more…

 
 
 

Australian National Register Of Environmental Sensitivities

Australian news

Wednesday 20 May 2015

 

From Sharyn Martin (via email):

ANRES
 

Australian National Register of Environmental Sensitivities

The prevalence of Environmental Sensitivities is largely unknown in Australia.

ANRES (Australian National Register of Environmental Sensitivities) aims to provide the background evidence to highlight the need for recognition and assistance. Statistics are needed for reform, particularly at a political level.

This is not a government action but an independent initiative to gather data in the hope of influencing government decisions. Persons who register on this site will not be individually identified; their data will be kept private and secure.

If you have environmental sensitivities or are a carer of someone with environmental sensitivities please take the time to:

  • Firstly, become a member of ANRES – membership is free; and
     
  • Secondly, register your environmental sensitivities by following the link below or menu on the left of the page so you can contribute to the recognition of these medical disorders.

Read more…

 
 
 

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

In the News


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