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ME/CFS Australia Ltd
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Registered Charity 698


Mailing address:
PO Box 28,
South Australia 5007

Closed while relocating

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.


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.


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
Topic: Dr Katia Ferrar and Ms Minh Pham from the University of South Australia will discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”, which relates to determining parameters for ME/CFS activity incapacity, and how this will help to develop treatment options.

Saturday 9 April 2016
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016

Saturday 27 August 2016

Saturday 19 November 2016
Annual General Meeting
Details for all seminars…

ME/CFS Diagnostic Criteria and Guidelines

www ME: International Consensus Criteria
(Journal of Internal Medicine, Aug 2011)

For GPs:
ME – Adult & Paediatric:
International Consensus Primer for Medical Practitioners
(PDF, 1.49 MB)


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

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


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


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


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)


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
ME/CFS Australia Ltd
Address: PO Box 7100 Dandenong VIC 3175
Phone: (03) 9793 4500
Fax: (03) 9793 1866
ACT ME/CFS Society, Inc
Address: c/o SHOUT, PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
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
The ME/CFS & FM Association NSW
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
ME/CFS Australia (Northern Territory)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Facebook Page
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
ME/CFS Australia (Tasmania)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
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
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


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


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



Supporting A Loved One Through Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

South Australian news

Wednesday 25 May 2016


From society member Melissa Searle:


Couple holding hands

Supporting a loved one through Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

By Melissa Searle

When a person is diagnosed with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) it can be a difficult and scary time, but it can be made easier when they have support. Although most people associate ME/CFS with physical symptoms such as fatigue, the emotional and psychological symptoms are just as taxing on peoples bodies. ME/CFS sufferers deal with hidden symptoms such as anxiety, panic attacks, social anxiety, brain fog and insomnia. Supporting someone through ME/CFS, although hard on the caregiver, can also help in the ME/CFS sufferer’s recovery.


Read more…


Highlighting ME/CFS On The Global Health Agenda

International news

Wednesday 25 May 2016


From the UK's Action for M.E.:


Sonya Chowdhury
Sonya Chowdhury

Highlighting M.E. on the global health agenda

May 23, 2016

© 2016 Action for M.E.

Action for M.E. Chief Executive Sonya Chowdhury is in Geneva today [Monday May 23] attending the 69th World Health Assembly at the United Nations.

This event brings together world leaders, health ministers and policy influencers to discuss and adopt resolutions with the aim of improving health outcomes across the globe. Separate technical briefings are also organised to present new developments in public health, provide a forum for debate and facilitate information sharing.

This means that Sonya will be able to engage and network with key decision-makers to raise the profile of M.E. and identify opportunities for highlighting M.E. on the global health agenda. She will report on the event in a forthcoming blog post.


Full article…


Dairy Contributes Significantly To Symptoms In Chronic Fatigue Syndrome Adolescents

International news

Tuesday 24 May 2016


From Health Rising:



Diary Contributes Significantly To Symptoms in Chronic Fatigue Syndrome Adolescents

"Cow's milk protein intolerance is a common problem in young people with chronic fatigue syndrome." – Dr. Peter Rowe

By Cort Johnson
May 24, 2016

Dr. Peter Rowe of Johns Hopkins is an established researcher and doctor at Johns Hopkins University with dozens of ME/CFS studies to his name. He was one of the first researchers to find orthostatic intolerance in ME/CFS, to associate Ehlers-Danlos Syndrome with ME/CFS, and the first to propose that muscle-tendon problems were impairing range of motion and causing exercise problems.

Now he's blazing another trail. He just published a study indicating that milk intolerance is common in adolescents with ME/CFS and is causing them significant distress.

In a robust study of 55 adolescents Rowe demonstrated that dairy commonly caused gastrointestinal disturbances in many young people with chronic fatigue syndrome, that removing dairy removed the gastrointestinal symptoms, and that reintroducing it caused the symptoms to come back.

In a former talk Dr. Rowe went so far as to say that milk caused such problems in those insensitive to it, that unless the problem was recitified (i.e. dairy products were removed from their diet) that significant improvement was unlikely.

The abstract stated that when milk was removed from the diet of milk intolerant adolescents that their health rebounded so that it was similar to others of their age with ME/CFS.

The gist was that milk problems don't cause ME/CFS but they can make make it significantly worse.


Full article…


Melbournians Join Global Protest #MillionsMissing Melbourne

Australian news

Tuesday 24 May 2016


From Australian news outlet Newsmaker:



Melbournians Join Global Protest #MillionsMissing Melbourne

Monday, May 23rd, 2016 - Millions Missing Event

Copyright© 2005-2016 Newsgallery Pty Ltd. NewsMaker® is a trademark of NewsGallery Pty Ltd.

#Millions Missing is a global day of protest for the millions missing from work, life, school, and families because of the devastating Neuroimmune illness ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). #MillionsMissing Melbourne will join protests in the U.S., U.K. and Canada on May 25th 2016 from 12–2 pm, on the lawn of the Victorian State Library.

The protest will include patients, carers and advocates and donations of patients shoes as a symbolic and poignant statement of those missing from life and too ill too attend. Professor Nancy Klimas, a U.S. AIDS and ME/CFS specialist and researcher says: “Patients with this illness can experience a level of disability that’s equal to that of late stage AIDS, patients undergoing chemotherapy, or those with secondary Multiple Sclerosis.”


Full article…


Disabled Former Teacher Campaigns For Disease Research

International news

Tuesday 24 May 2016


From US news outlet

Disabled former teacher campaigns for disease research

By Naomi Whidden
May 23, 2016

© Copyright 2006-2016 Gatehouse Media, LLC. Some rights reserved.
Original content available for non-commercial use under a Creative Commons license, except where noted.

A local mother and former high school teacher is rallying support in the state capital this week as part of a national campaign calling for more government research for a debilitating chronic disease.

Lauren Saikkonen is a disabled resident in Jacksonville, and recently became interested in raising awareness and support for Myalgic Encephalomyelitis (ME), or more commonly known as Chronic Fatigue Syndrome (CFS), after she was diagnosed with the illness six years ago at age 26.

“I took me 11 years to receive an accurate diagnosis. I would go to the doctor and say, ‘I think I have the flu’, and they would test me but it would always come back negative for everything,” Saikkonen said.


Full article…


'My Illness Felt Like Someone Was Beating Me With A Baseball Bat...'

International news

Monday 23 May 2016


From UK newspaper the Lancashire Evening Post:


Steven Kidd
Steven Kidd who has ME/Chronic Fatigue Syndrome

‘My illness felt like someone was beating me with a baseball bat...’

AASMA DAY talks to two Lancashire sufferers and finds out how there is hope at the end of the tunnel and how they are learning to live with the condition with support from a specialist NHS service

By Aasma Day
19 May 2016

© 2016 Johnston Publishing Ltd. All rights reserved.

Wrongly labelled by some people as being a condition that affects “lazy people” Steven Kidd know only too well this isn’t true.

Steven, 30, who lives in Lancaster, went from being an extremely active person to someone who couldn’t get to the end of his street without feeling completely exhausted.

Steven, who has an 18-month-old daughter and two stepchildren, recalls: “I went from being a very active person of athletic standards to becoming a person very limited in what I could do.

“I used to run, cycle and ride cycling road bikes.

“I was going to ride cycling road bikes at a professional level and got myself very close to doing so.

“But then I went from being incredibly fit to this.”


Full article…


ME/CFS Support Auckland Seeks More Support For Sufferers

International news

Monday 23 May 2016


From New Zealand news outlet


Wendy Matthews and Bronwyn-Leigh McInroy
ME/CFS East Auckland Support Group Co-ordinator
Wendy Matthews and Auckland Field Worker
Bronwyn-Leigh McInroy.
(Photo: Meghan Lawrence / Fairfax NZ)

ME/CFS Support Auckland seeks more support for sufferers

Meghan Lawrence
19 May 2016

© 2016 Fairfax New Zealand Limited

Two decades ago Wendy Matthews became unwell after contracting a virus that would leave her bedridden for months.

The Whitford resident was later diagnosed with Myalgic Encephalopathy or Chronic Fatigue Syndrome (ME/CFS).

She is one of about 20,000 New Zealanders with the condition that causes incapacitating fatigue, headaches, cognitive dysfunction, amongst other symptoms.

"I would have massive shaking that would go on for hours and big lesions that appeared on my chest. I remember after the first three months thinking how could I be this sick, this long and not have died," Matthews says.

There's no specific cure for the illness, but it has a profound impact on people's careers, their ability to study or maintain relationships and on their independence.

Matthews, who runs the East Auckland Support Group, says many people don't understand the severity of ME/CFS.


Full article…


Chronic Fatigue Patients More Likely To Suppress Emotions

International news

Monday 23 May 2016


From the American Psychological Association:



Chronic Fatigue Patients More Likely To Suppress Emotions

"Fight or flight" biological response may contribute to fatigue

17 May 2016

© 2016 American Psychological Association

Read the journal article:
Emotional Suppression in Chronic Fatigue Syndrome: Experimental Study (PDF, 79KB)

WASHINGTON — Chronic fatigue syndrome patients report they are more anxious and distressed than people who don’t have the condition, and they are also more likely to suppress those emotions. In addition, when under stress, they show greater activation of the biological ”fight or flight” mechanism, which may add to their fatigue, according to new research published by the American Psychological Association.

“We hope that this research will contribute to a greater understanding of the needs of people with chronic fatigue syndrome, some of whom may tend not to communicate their experiences of symptoms or stress to other people,” said the study’s lead author, Katharine Rimes, PhD, of King’s College London. “Others may be unaware of the difficulties experienced by chronic fatigue syndrome patients and therefore not provide appropriate support.”

Participants who felt that expressing their emotions was socially unacceptable were more likely to suppress them. This was the case for both chronic fatigue patients and healthy people, according to the study published in the APA journal Health Psychology®

This study of 160 people in the U.K. relied on self and observer reports, as well as physiological responses that were collected before, during or after the participants watched a distressing film clip. Half of the participants had been diagnosed with chronic fatigue syndrome while the rest were healthy.


Full article…


Irritable Bowel Syndrome And Fibromyalgia

International news

Monday 23 May 2016


From the National Pain Report:



Irritable Bowel Syndrome and Fibromyalgia

By Ed Coghlan
17 May 2016

© Copyright 2016 National Pain Report

The pain associated with Irritable Bowel Syndrome (IBS) can be quite intense. The pain associated with fibromyalgia is also difficult to endure.

About 70% of patients with fibromyalgia also have IBS, which affects over 25 million people in the U.S.

“In general, it is likely that they coexist for years, but they can flare at the same time or at different times,” Lin Chang, MD, co-director of the Oppenheimer Center for Neurobiology of Stress told WebMD.


Full article…


Ties That Heal: Stanford Medicine Magazine Examines Relationships

International news

Monday 23 May 2016


From Stanford Medicine's Scope magazine:


Paper hearts

Ties that heal: Stanford Medicine magazine examines relationships

By Rosanne Spector
16 May 2016

© 2016 Stanford Medicine

Talk about pressure.

Ron Davis, PhD, has built a career solving biochemical puzzles — and now his son is desperately ill due to a biochemical puzzle of his own. So Davis, a professor of biochemistry and of genetics at Stanford, has taken on a new scientific challenge: sussing out the molecular cause of chronic fatigue syndrome, the disease afflicting his son.

The story of this quest appears in the new issue of Stanford Medicine magazine as part of the spring issue’s special report, “Relationships: Ties that heal.”

As the article called “The puzzle solver” explains, for Davis:

Each day has become a race to unravel the mystery of chronic fatigue syndrome, the disease that is killing his 32-year-old son, a freelance photographer who was forced to move into his childhood home five years ago when he was no longer able to care for himself. It’s a puzzle that Davis ruminates over day after day, his mind humming along in high gear, constantly shifting through data, hypothesizing, analyzing.


Full article…


REMODDELLED: A Pre-Loved Clothing Fashion Show

South Australian news

Sunday 22 May 2016


From Facebook:



REMODDELLED: a pre-loved clothing fashion show.

Colonel Light Gardens Church of Christ
539-541 Goodwood Road

The BIG A Op-Shop run by Colonel Light Gardens Church of Christ is hosting a pre-loved clothing fashion show to raise money for ME/CFS Australia (SA) Inc.

Ladies, come along for a laugh, some treats + some bargains - the Op-Shop will be open after the show!

$5 entry.

And the more the merrier :)



Details on Facebook…


Medical Marijuana News Update: Marijuana Is Said To Effectively Treat Fibromyalgia

International news

Saturday 21 May 2016


From Parenting Herald:


Medical marijuana
A one-ounce bag of medicinal marijuana is displayed at the
Berkeley Patients Group March 25, 2010 in Berkeley,
California. California Secretary of State Debra Bowen
certified a ballot initiative late yesterday to legalize the
possession and sale of marijuana in the State of California
after proponents of the measure submitted
over 690,000 signatures.
(Photo: Justin Sullivan/Getty Images)

Epilepsy Drug Lyrica Linked to Birth Defects Risk

By Abbie Kraft, Parent Herald
May 15, 2016

©2005-2016 WebMD, LLC. All rights reserved.

Researchers are now pushing the benefits of medical marijuana as the leading cure for fibromyalgia relief. The chronic pain and sleep disturbances can now be soothed by medical marijuana.

Patients suffering from fibromyalgia have been struggling to find a cure or at least a pain relief. To no avail, most pharmaceutical prescriptions would usually leave them with side effects or negative results.

According to HERB, health care professionals are still trying to figure out if fibromyalgia should be considered as a medical condition of not. Fibromyalgia struck 5 to 12 million Americans (mostly women); its cause, however, is yet to be found.

Sun Times reported that medical marijuana can potentially provide a better pain relief or even a cure for the fibromyalgia. Traditional medicine has already failed some patients with the condition, thus the opted to try medical marijuana.


Full article…


Lyrica Linked To Slight Risk Of Birth Defects

International news

Saturday 21 May 2016


From WebMD:


Martine McCutcheon

Epilepsy Drug Lyrica Linked to Birth Defects Risk

By Steven Reinberg, HealthDay Reporter
May 18, 2016

©2005-2016 WebMD, LLC. All rights reserved.

Expectant mothers should probably avoid the drug, experts say, although study didn't prove cause and effect

WEDNESDAY, May 18, 2016 (HealthDay News) -- The widely prescribed drug pregabalin (Lyrica) may slightly increase the risk for birth defects, a new study suggests.

In a small study, researchers found that among women taking Lyrica during the first trimester of pregnancy, 6 percent had infants with major birth defects. In women who weren't taking the drug, 2 percent had a baby with a major birth defect, the study found.

"These results should be taken with caution," said study senior author Dr. Thierry Buclin, from the Swiss Teratogen Information Service and the division of clinical pharmacology at the Lausanne University Hospital, in Switzerland. "It's a warning, but it cannot be taken as a certainty."

Lyrica is prescribed for a range of health problems, including epilepsy, fibromyalgia and anxiety.


Full article…


Martine McCutcheon Forced To Use Wheelchair In ME Battle

International news

Friday 20 May 2016


From the UK's Closer magazine:


Martine McCutcheon
Martine McCutcheon

Martine McCutcheon forced to use wheelchair in ME battle

By Kayleigh Dray
13 May 2016

© Copyright 2016, Bauer Consumer Media Limited. All rights reserved.

Martine McCutcheon told husband Jack McManus to "meet someone else" in midst of ME battle

Sitting down with ITV’s Loose Women, Martine McCutcheon bravely opened up about her battle with ME - otherwise known as chronic fatigue syndrome.

Describing the condition and its symptoms, she told them: “You're pushed to your limits too much.”


Full article…



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

South Australian news

Friday 20 May 2016


From the South Australian Health and Medical Research Institute (via email):



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…


Epidemiological Characteristics Of ME/CFS In Australian Patients

International news

Thursday 19 May 2016


From Dove Press:


Dove Press

Epidemiological characteristics of chronic fatigue- syndrome/myalgic encephalomyelitis in Australian patients

Authors Johnston SC, Staines DR, Marshall-Gradisnik SM
Received 21 September 2015
Accepted for publication 31 March 2016
Published 17 May 2016 Volume 2016:8 Pages 97—107
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Harminder Singh
Peer reviewer comments 3
Editor who approved publication: Professor Henrik Toft Sörensen

Samantha C Johnston1,2, Donald R Staines1, Sonya M Marshall-Gradisnik1,2

1National Centre for Neuroimmunology and Emerging Diseases, Menzies Health Institute Queensland
2School of Medical Sciences, Griffith University, Parklands, QLD, Australia

© Copyright 2016Dove Press Ltd

Background: No epidemiological investigations have previously been conducted in Australia according to the current clinical definitions of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The aim of this study was to describe sociodemographic and illness characteristics of Australian patients with CFS/ME.

Methods: A cross-sectional survey on the medical history of patients enrolled in an Australian CFS/ME research database between April 2013 and April 2015. Participants were classified according to Fukuda criteria and International Consensus Criteria.

Results: A total of 535 patients diagnosed with CFS/ME by a primary care physician were identified. The mean age of all patients was 46.4 years (standard deviation 12.0); the majority were female (78.61%), Caucasian, and highly educated. Of these, 30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions. Within those meeting CFS/ME criteria, the most common events prior to illness included cold or flu, gastrointestinal illness, and periods of undue stress. Of the 60 symptoms surveyed, fatigue, cognitive, and short-term memory symptoms, headaches, muscle and joint pain, unrefreshed sleep, sensory disturbances, muscle weakness, and intolerance to extremes of temperature were the most commonly occurring symptoms (reported by more than two-thirds of patients). Significant differences in symptom occurrence between Fukuda- and International Consensus Criteria-defined cases were also identified.

Conclusion: This is the first study to summarize sociodemographic and illness characteristics of a cohort of Australian CFS/ME patients. This is vital for identifying potential risk factors and predictors associated with CFS/ME and for guiding decisions regarding health care provision, diagnosis, and management.

Keywords: chronic fatigue syndrome, myalgic encephalomyelitis, chronic fatigue, diagnosis, epidemiology


Full article…


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