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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, Prospect Medical Centre
Topic: "The Fatigue Spectrum and the Gut"
Saturday 13 June 2015
1:30pm
Saturday 8 August 2015
1:30pm
Saturday 14 November 2015
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
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)

 

 

Canadian MCS Sufferer Fights Eviction Notice

International news

Saturday 25 April 2015

 

From Canada's CBC News Nova Scotia:

Wendy Kearley
The Eastern Mainland
Housing Authority wants to
move Wendy Kearley from a
house into an apartment.
She is fighting that move
because she worries about
the effect on her multiple
chemical sensitivity.
(Photo: Adam MacInnis
– The News)

 

Wendy Kearley, severe chemical sensitivity sufferer, fights eviction notice

By Natasha MacDonald-Dupuis
CBC News
Posted: Apr 23, 2015 6:30 AM AT
Last Updated: Apr 23, 2015 8:55 AM AT

63-year-old challenging move by Eastern Mainland Housing Authority in Nova Scotia Supreme Court

A 63-year-old New Glasgow woman with a severe case of multiple chemical sensitivity (MCS) will be in Nova Scotia Supreme Court in Pictou Thursday as she fights an eviction notice from her local housing authority.

Eastern Mainland Housing Authority claims Wendy Kearley is over-housed for her unit and says it must free the home for a family in need. They have offered her an apartment, but Kearley says the move could dangerously worsen her condition.

She says she gets sick from low-level exposure to every day chemicals such as tobacco, perfume and pesticides, but also from natural chemicals like grass and plants.

Unlike most people, her body isn't able to detox from even the smallest exposures, and it affects nearly every organ in her body. According to her doctor, the damage is accumulative and permanent.

Read more…

 
 
 

Fibromyalgia Sufferer Shares Experience In Theatre Performance

International news

Friday 24 April 2015

 

From San Francisco newspaper Golden Gate Xpress:

Vincent Lim (left) and Nathan Barone
SF State student and
co-director of CockTales,
Vincent Lim (left) sits with
Nathan Barone for a portrait
in a theater on campus on
Tuesday, April 21. Barone
will perform a spoken word
piece in the production
CockTales.
(Photo: Helen Tinna / Xpress)
 

COCKTALES PROMOTES STUDENT DISCUSSION ON GENER THROUGH PERFORMANCE


April 22, 2015

Before being diagnosed with the painful musculoskeletal condition Fibromyalgia halfway through his sophomore year of college, 24-year-old Nathan Barone associated being a man with his ability to play sports.

“It forced me to surrender and understand I won’t be able to do the things that were part of my identity as man,” Barone said. “It left me feeling very vulnerable. Vulnerability and traditional masculinity are not two things that coincide in the minds of many men.”

Barone’s diagnosis was the basis for his spoken word piece for CockTales, a production for men and women to discuss masculinity and gender-related issues. In his piece, the University of Oregon graduate said he will share how he has coped with Fibromyalgia and how it has affected who he is as a person and as a man.

Read more…

 
 
 

ME & My CFS Documentary

International news

Thursday 23 April 2015

 

UK ME/CFS sufferer Andrew Love is hoping to make a documentary:

ME & My CFS
 

ME & My CFS Documentary

April 21, 2015

So in the last few days I have received a large influx of people submitting to the content form and contacting me about the project.

It became clear to me that several key points about the project have not been made clear, which is what I am going to do here.

Firstly, Who am I?

Being as the form was asking for some personal info I can understand that you would want to know who is collecting it, and why. so here we go.

I should make it clear that I am not a professional documentary producer.

I am producing this because “ME/CFS” affects me, and I want to do something which could help someone else in my position.

My name is Andrew Love, I am a 17 year old student (currently doing A-Levels) living in the east of England with my parents, I suffer from a condition called POTS (Postural Orthostatic Tachycardia Syndrome), which is sometimes strongly linked to cases of CFS.

Read more…

 
 
 

Hoping For A Cure

Australian news

Wednesday 22 April 2015

 

From ABC Open contributor "Sallykj":

Sallykj
 

Hoping for a cure

By Sallykj
3 min read
From Open Drum

LIVING WITH DISABILITY: What makes the world right for you?

Some time over the past thirty years, I was transformed from being a mother to being a carer.

Of course, I am still a mother. But, while one of our children is happily married, the other lives with me and my husband, David.

Jamie, who is thirty, is housebound with severe ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). On a scale of one to a hundred, with one hundred being completely well, she is around ten to twenty. She rarely leaves the house, other than for medical appointments, and needs help with most day-to-day activities.

Read more…

 
 
 

Patients With Fibromyalgia Have Eye Differences

International news

Tuesday 21 April 2015

 

From Healio Rheumatology:

Eye
 

Patients with FM have smaller stromal nerve thickness, lower corneal sub-basal plexus nerve density

Ramírez M, et al. Sem Arth Rheum. 2015;doi:10.1016/j.semarthrit.2015.03.003.
April 16, 2015

Women with fibromyalgia (FM) had a thinner average stromal nerve thickness and decreased corneal sub-basal plexus nerve density per square millimeter compared with healthy control participants, and corneal confocal microscopy could be a useful tool to identify patients with FM, according to the results of recently published research.

Researchers enrolled 17 women with fibromyalgia (FM) who met both American College of Rheumatology 1990 and 2010 criteria for FM and 17 healthy women matched for age. Participants were between 18 and 50 years of age with no concurrent diseases.

All participants completed Spanish language questionnaires to assess FM symptoms, including autonomic dysfunction, sleep quality, anxiety, depression, fatigue, neuropathic pain and general well-being. The questionnaires included the Fibromyalgia Impact Questionnaire (FIQ), the Medical Outcome Sleep Scale (MOS), the Composite Autonomic Symptoms and Signs (COMPASS) assessment, the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Assessment of Fatigue Scale (MAF), SF-36, and the Leeds Assessment of Neuropathic Symptoms and Signs (LANSS) assessment.

Read more…

 
 
 

Chronic Fatigue Syndrome: Features Of A Population Of Patients From Northern Italy

International news

Monday 20 April 2015

 

From ProHealth:

ProHealth
 

Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individuals with Chronic Fatigue Syndrome

By A.E. Brown et al.
www.ProHealth.com
April 17, 2015

By A.E. Brown et al.

Abstract

Background: Post exertional muscle fatigue is a key feature in Chronic Fatigue Syndrome (CFS). Abnormalities of skeletal muscle function have been identified in some but not all patients with CFS. To try to limit potential confounders that might contribute to this clinical heterogeneity, we developed a novel in vitro system that allows comparison of AMP kinase (AMPK) activation and metabolic responses to exercise in cultured skeletal muscle cells from CFS patients and control subjects.

Methods: Skeletal muscle cell cultures were established from 10 subjects with CFS and 7 age-matched controls, subjected to electrical pulse stimulation (EPS) for up to 24h and examined for changes associated with exercise.

Read more…

 
 
 

Debilitating Fatigue Reported By Patients With Autoimmune Diseases

International news

Sunday 19 April 2015

 

From Healio Rheumatology:

Healio
 

Debilitating fatigue reported by patients with autoimmune diseases

April 15, 2015

Fatigue was reported by 98% of patients with autoimmune disorders polled, and fatigue that prevented completion of everyday tasks was reported by 68% of the patients, according to a press release from the American Autoimmune Disease Related Diseases Association.

The American Autoimmune Disease Related Diseases Association (AARDA) conducted an online survey of 7,838 patients with autoimmune disorders who were recruited through the AARDA’s Facebook page, by outreach to the Autoimmune Awareness and Education Forum Facebook group, and via email to the National Coalition of Autoimmune Patient Groups, a network of 37 disease-specific patient groups.

The survey was accessible online between Feb. 7 and March 2. The fewer than 0.5% of respondents with only non-autoimmune disorders, such as fibromyalgia or chronic fatigue syndrome, were excluded. Results from the survey were presented recently at an autoimmune summit in Washington, D.C.

Read more…

 
 
 

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

In the News


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