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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)



Coming Soon – A Happy Seven: An Experimental Short Film About Fibromyalgia

International news

Friday 6 May 2016


From ProHealth:

A Happy Seven

Coming Soon – A Happy Seven: An Experimental Short Film About Fibromyalgia

By Melissa Swanson
May 5, 2016

© 2016 ProHealth, Inc. All rights reserved.

I was attending a fibromyalgia support group meeting at the Courage Kenny Rehabilitation Institute where I met Sophie Meath, Director of A Happy Seven. She had asked if she and a few of the actors could attend a meeting, listen and ask questions. It was at the beginning of her project and she wanted to hear from us what we would like people to know about living with fibromyalgia. The premier is in Minneapolis, MN on May 12th, 2016 which happens to be International Fibromyalgia Awareness Day. I fell in love with the idea and the compassion and passion that Sophie showed when she talked about the film and I know you will too!

Melissa: Why did you choose to make a film about fibromyalgia?

Sophie: I chose to make a film about fibromyalgia simply because it needed to be done. My younger sister can't remember a time when she didn't have fibro, but she wasn't diagnosed until just over a year ago when her symptoms started getting worse. Thankfully, she and I are very close, and so she was able to deeply confide in me about her struggles. It was heartbreaking to see my little sister grapple with all the limitations of fibro that constricted her future and killed some of her dreams, not to mention the intense pain she constantly endures. As I began to understand the unique burdens that having invisible illnesses and chronic pain produces, I began to recognize the incredible lack of understanding surrounding her and others in her position. As a filmmaker, I create art that is a remarkably powerful platform for empathy and understanding, so it was a natural development for me to decide to make a film about something so important to me that I'd been becoming more empathetic and understanding about myself.

Full article…


From the movie's GoFundme campaign:


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

South Australian news

Friday 6 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…


Autumn Songs: Fundraising Concert

South Australian news

Thursday 5 May 2016


From Emma Horwood (via email):

Emma Horwood
Emma Horwood

Tanya Vallejo and Emma Horwood
Tanya Vallejo and Emma Horwood

Autumn Songs

Emma Horwood – Harp & Voice

Sunday May 15th – 3pm

St Mary's Catholic Church, 179 Stanley Street, North Adelaide [map]

All tickets $20, online or at the door.


Join acclaimed Adelaide soprano and harpist Emma Horwood for a varied recital of music celebrating life and love. From Renaissance lute songs to opera arias, Spanish villancicos, popular folksongs and contemporary pieces by Sting, Billy Joel and Michael Bublé, let Emma's silvery soprano accompanied on pedal harp entrance your senses. Emma will also perform some stunning harp solos, including Baroque Flamenco music and Marcel Grandjany's 'Automne'.

This concert is a fundraiser for Tanya Vallejo. Tanya has been bedridden with ME/CFS (Chronic Fatigue Syndrome) and severe Crohns disease for more than 25 years and is in dire need of financial support. 100% of the proceeds and Emma's CD sales on the day will go to fund care and medicines for her friend. You can make a direct donation via

For further information please call 0411 554 531.


PDF Download Autumn Songs flyer (4.62 MB)



Read more…


Canadian ME/CFS Petition

International news

Thursday 5 May 2016


From Canadian ME/CFS sufferer Scott Simpson:

Gold Medal


Campaign created by Scott Simpson


Dear Minister Philpott and Prime Minister Trudeau,

Over 400,000 Canadians are living and suffering with myalgic encephalomyelitis (ME). About 25% of people with ME are severely affected and home or bed bound. As you may know, ME is a chronic, complex, multi-system disease. You may not know that zero funding has been allocated to biomedical ME research this year. Zero.

Canadians living with ME are in dire need of investment in biomedical ME research. We are looking toward the new government and new Minister of Health for your leadership for our neglected disease.

"I wish they would stop calling us 'ME patients' implies we receive treatment".

Some patient group always falls into the cracks of a medical system. We are that group. We are more than 400,000 Canadians and we are sick - yet we have no medical specialists, no biomedical researchers, and no treatment options.

We need Ministry leadership with a Federal Framework for Myalgic Encephalomyelitis to ensure:

  • biomedical research funding commensurate with severity and prevalence of ME in Canada;
  • physician education about ME and (im)proper treatments;
  • access to off-label biomedical treatments.

Why is this important?

What patients with a chronic illness have the highest unmet health care needs in Canada? 

What illness, commensurate with severity and prevalence, has the highest unmet research funding needs in Canada? 

Canadian ME patients are #1 in need of both research and health care. It is an unfortunate distinction.

Pictured [above] is the final 1st place medal I won in a triathlon race before I got sick with ME. Now it also represents 1st place in unmet research and health care needs among Canadian patients.

I have left this 1st place medal with your Policy Advisor as a reminder of what my life was like before ME --- and what it could be again.

Recent international ME research are discovering biomarkers (natural killer cells, cytokines) and off-label medications (Ampligen, Rituximab) are effective in some ME patients in small studies. This is an opportunity to invest in Canadian biomedical research and expand our knowledge of complex neuro-immune illnesses.

We have seen quick and decisive action by this government (Syrian refugee crisis). Canadians living with ME also need quick and decisive leadership to deal with this domestic crisis.

A Federal Framework for Myalgic Encphalomyelitis would begin to address the needs of Canadian ME patients.

Go to the petition…


NSW Event On May 12 To Raise ME/CFS Awareness

Australian news

Wednesday 4 May 2016


From New South Wales newspaper The Advertiser Lake Times:

Ainslie Eccleston
AWARENESS CAMPAIGN: Ainslie Eccleston is
encouraging people to be a superhero for ME/CFS
and support the Undies on the Outside campaign.

Shellharbour event on May 12 to raise ME/CFS awareness

By Agron Latifi
May 2, 2016

Copyright © 2016. Fairfax Media.

Ainslie Eccleston would rather look silly and wear her underwear on the outside than suffer an “invisible illness’’ in silence.

The Albion Park Rail resident has been battling Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since 2006.

ME/CFS affects around 17 million people worldwide. It is a neuro-immune condition with wide ranging symptoms including profound and disabling fatigue and pain.

The Undies on the Outside Challenge is encouraging supporters to shine a spotlight on the invisible nature of the illness by revealing what usually stays hidden.

Full article…


Antiviral Combo May Be Next Blockbuster Fibromyalgia Drug

International news

Wednesday 4 May 2016


From National Pain Report:

Skip Pridgen, MD
Skip Pridgen, MD

Antiviral Combo May be Next Blockbuster Fibromyalgia Drug

By Donna Gregory Burch
May 2, 2016

Copyright 2016 National Pain Report

A general surgeon with a small practice in Tuscaloosa, Alabama, Dr. William “Skip” Pridgen admits he’s an unlikely creator for the next blockbuster fibromyalgia drug.

But the U.S. Food and Drug Administration (FDA) has fast tracked Pridgen’s novel pairing of famciclovir (Famvir), a common antiviral, with celecoxib (Celebrex), an anti-inflammatory arthritis drug, for a phase III trial next year. Based on data from a 2014 phase II trial, the combo known as IMC-1 could give some stiff competition to Lyrica and Cymbalta, two of the most profitable drugs prescribed for fibromyalgia.

Full article…


Fibromyalgia May Affect Sensory Perception And Blunt Touch Perception, Studies Show

International news

Wednesday 4 May 2016


From Bel Marra Health:

Woman wrist

Fibromyalgia may affect sensory perception and blunt touch perception, studies show

By Emily Lunardo
Wednesday, April 27, 2016

Copyright © 2016 BelMarraHealth. All Rights Reserved.

Fibromyalgia affects sensory perception and blunts touch perception. The findings of the study reveal that there is abnormal processing of signals in C-type skin nerves (associated with the perception of touch) in fibromyalgia.

The researchers from the National Center for Complementary and Integrative Health looked into whether fibromyalgia patients rated the perception of touch differently than healthy individuals. The study also looked into the opioid signaling in fibromyalgia.

Previous research has found that fibromyalgia sufferers have a smaller count of opioid receptors in the brain, which aid in pain signaling and mediate feelings of reward to natural behaviors.

Full article…


Spain Continues To Take Steps For Multiple Chemical Sensitivity

International news

Tuesday 3 May 2016


From Spain's Servicio de Información sobre Sensibilidad Química Múltiple y Salud Ambiental ("Multiple Chemical Sensitivity and Environmental Health Information Service"):

María José Moya
María José Moya, head of the SISS
and a severe MCS sufferer
(Photographer: Nekane Lazkano)

SPAIN CONTINUES TO TAKE STEPS FOR MULTIPLE CHEMICAL SENSITIVITY, the disease of the "bubble people" — official press release

1 May 2016

© Servicio de Información sobre Sensibilidad Química Múltiple y Salud Ambiental

Those affected cannot tolerate many of the chemicals that are used in our everyday lives

Spain continues to take steps for Multiple Chemical Sensitivity, the disease of the "bubble people"

  • In 2014 the Ministry of Health included MCS in the 9th edition of the International Classification of Diseases (ICD), which until December 31st 2015 was the reference system for classifying and coding diagnoses in the health system.
  • In this way Spain joined the list of countries that recognize the illness. This had been done before by Germany (2000), Austria (2001), Japan (2009), Switzerland (2010) and Denmark (2012), and later Finland (2014).
  • Until that moment, Spain had not classified MCS, and therefore it did not exist from an administrative point of view. This involved "a complete defencelessness situation" for the sufferers, as stated in the Explanatory Memorandum to the Non Law Proposition that originated the inclusion of MCS in the ICD.

MADRID, APRIL 30th, 2016

Spain has incorporated Multiple Chemical Sensitivity (MCS) to its new International Classification of Diseases or ICD, released on January 1st 2016 under the name of ICD-10-ES. Spain has thus consolidated its official recognition of the disease (expressed in 2014 through its explicit desire to include it in the existing classification at the time); and reaffirms its interest in moving forward for official protection of sufferers.

The procedures have been carried out by MP María del Carmen Quintanilla, member of Popular Party (PP) in collaboration with the Multiple Chemical Sensitivity and Environmental Health Information Service (SISS).

Full article…


Chronic Fatigue And Suicide: An Alarming Trend

International news

Tuesday 3 May 2016

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.


From dailyRx News Network:

dailyRx News

Chronic Fatigue and Suicide: An Alarming Trend

Suicide rates among those with chronic fatigue syndrome could increase six-fold, King's College London study finds.

By Neha Kashyap
May 2, 2016

Copyright © 2016 dailyRx® News Network, Inc. All Rights Reserved.

Chronic fatigue syndrome (CFS) could lead to deadly results when it comes to mental health, a new British study has found.

According to researchers from King's College in London, while overall deaths as a result of CFS are not increasing, the rate of mortality as a result of suicide is.

Chronic fatigue syndrome is the condition of never-ending fatigue that does not improve with rest and worsens with activity. Symptoms include persistent exhaustion, muscle weakness, memory problems and insomnia, according to the US Centers for Disease Control and Prevention. Risk factors include a weakened immune system, viral infections, stress and possibly diet. The condition is normally diagnosed after six months of symptoms.

In this study authors combed through data from the National Health Service, the British public health system. After analyzing data from those diagnosed with chronic fatigue from 2007 to 2013, the researchers discovered an alarming trend: a six-times greater likelihood of suicide as compared to the general population in England and Wales.

Full article…


The Grim Reality Of Being A 15-Year-Old Girl And Living With Chronic Fatigue Syndrome

International news

Monday 2 May 2016


From Wales Online:

Sarah Griffiths and, right, pictured with her mum
Sarah Griffiths and, right, pictured with her mum

The grim reality of being a 15-year-old girl and living with chronic fatigue syndrome

Sarah Griffiths has had to drop four GCSE subjects and leave school because of her condition

1 May 2016

© 2016 Media Wales Ltd

Typical teenager Sarah Griffiths was enjoying a promising modelling career before being struck down with a condition which has left her struggling to even leave the house.

The 15-year-old passionate horserider’s life has been turned upside down after she was diagnosed with chronic fatigue syndrome or ME which stands for myalgic encephalomyelitis.

Full article…


Underwear Goes On The Outside For Charity

International news

Monday 2 May 2016


From the White House Chronicle:

Ron Davis
Ron Davis, ME Undies Challenge


April 28, 2016

Ronald Davis is a respected professor of biochemistry and genetics at Stanford University, and director of its Genome Technology Center. So why is a picture of him wearing his underwear over his pants superhero-style circulating on social media?

Davis is not alone. Others are joining in making themselves look ridiculous every day.

Looking silly for a serious cause

The answer is that Davis is a research scientist whose son is severely afflicted with Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome — a name that dismisses the severity of this little understood and understudied disease that has devastated the lives of perhaps 1 million Americans, and what are calculated to be 17 million people worldwide.

Taking a selfie with underwear worn over outerwear is a new campaign, “Undies on the Outside,” to raise money — desperately needed money — for research on ME.

Full article…


Bridges & Pathways: ME/CFS Multidisciplinary Clinical and Research Centre

South Australian news

Sunday 1 May 2016


From Bridges & Pathways:

Bridges & Pathways

Bridges & Pathways

ME/CFS Multidisciplinary Clinical and Research Centre

Copyright © 2016 Bridges & Pathways. All Rights Reserved.

Bridges & Pathways is working with the South Australian ME/CFS/FMS Clinical and Research Collaboration (doctors, allied health, practice nurses, university students, researchers, primary healthcare agencies and consumer groups) to improve services and research for people with ME/CFS and Fibromyalgia.

Collaborator membership varies, depending on the projects and funding. Currently, providers/researchers are working together to validate practice tools and care pathways to train doctors and other medical professionals and bring the latest treatments to South Australia.

The South Australian Clinic and Best Practice Centre aims to demonstrate cost effective best practice care for Australians living with these poorly understood complex chronic conditions.

Care pathways are based on 17 years of action research; surveys, focus groups, working groups, small university projects and service provision data.

Read more…


Hyperactive Parathyroid May Trouble Women With Fibromyalgia, Study Reports

International news

Sunday 1 May 2016


From Fibromyalgia News Today:

Parathyroid glands

Hyperactive Parathyroid May Trouble Women with Fibromyalgia, Study Reports

By Patricia Inacio, PhD
April 27, 2016

© Copyright 2015 - 2016 BioNews Services, LLC 
All rights reserved.

Women with fibromyalgia have a high incidence of hyperparathyroidism, a disease caused by an overactive parathyroid, according to a study titled “High frequency of asymptomatic hyperparathyroidism in patients with fibromyalgia: random association or misdiagnosis?” and published in the journal Revista Brasileira de Reumatologia.

Fibromyalgia and hyperparathyroidism share a range of symptoms, including fatigue, arthralgia, myalgia, sleep disturbances, depression, anxiety and memory impairment, which increase the chances for an improper diagnosis. Primary hyperparathyroidism is a disease caused by a hyperactive parathyroid, which are small endocrine glands located in the neck, next to the thyroid, and responsible for the secretion of a hormone, the parathyroid, that regulates calcium levels in the body.

Full article…


Progressive Brain Changes In Patients With Chronic Fatigue Syndrome: A Longitudinal MRI Study

Australian news

Saturday 30 April 2016


From the Journal of Magnetic Resonance Imaging (via Wiley Online Library):


Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study

Zack Y. Shan PhD
Richard Kwiatek MBBS
Richard Burnet MBBS
Peter Del Fante MBBS
Donald R. Staines MBBS
Sonya M. Marshall-Gradisnik PhD
Leighton R. Barnden PhD

First published: 28 April 2016
DOI: 10.1002/jmri.25283
Cited by: 0 articles
Funded by: Judith Jane Mason Foundation

Copyright © 1999 - 2016 John Wiley & Sons, Inc. All Rights Reserved



To examine progressive brain changes associated with chronic fatigue syndrome (CFS).

Materials and Methods

We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w). Each participant was characterized with Bell disability scores, and somatic and neurological symptom scores. We tested for differences in longitudinal changes between CFS and NC groups, inter group differences between pooled CFS and pooled NC populations, and correlations between MRI and symptom scores using voxel based morphometry. The analysis methodologies were first optimized using simulated atrophy.


We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS while in NCs it was unchanged (family wise error adjusted cluster level P value, PFWE < 0.05). This longitudinal finding was consolidated by the group comparisons which detected significantly decreased regional WM volumes in adjacent regions (PFWE < 0.05) and decreased GM and blood volumes in contralateral regions (PFWE< 0.05). Moreover, the regional GM and WM volumes and T2w in those areas showed significant correlations with CFS symptom scores (PFWE < 0.05).


The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.

PDF Download PDF (519 KB)

Full article…


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