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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, Accredited Exercise Physiologist from Adelaide Exercise Physiology
Saturday 8 August 2015
1:30pm
Speaker: Stelios Soulis, dietitian with Nutrition Health Experts at Mile End
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)

 

 

Unintended Consequences Of Not Specifying Exclusionary Illnesses For Systemic Exertion Intolerance Disease

International news

Friday 3 July 2015

 

From ProHealth:

ProHealth
 

Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease

By Leonard A. Jason et al.
www.ProHealth.com
June 26, 2015

Abstract

The Institute of Medicine recently proposed a new case definition for chronic fatigue syndrome (CFS), as well as a new name, Systemic Exertion Intolerance Disease (SEID). Contrary to the Fukuda et al.’s CFS case definition, there are few exclusionary illnesses specified for this new SEID case definition.

The current study explored this decision regarding exclusionary illnesses using the SEID criteria with four distinct data sets involving patients who had been identified as having CFS, as well as healthy controls, community controls, and other illness groups.

Read more…

 
 
 

Antibody Wipeout Found To Relieve Chronic Fatigue Syndrome

International news

Thursday 2 July 2015

 

From New Scientist:

Woman on couch
There's now hope of a
treatment for chronic
fatigue syndrome
(Image: Julien Magre/
plainpicture
)

Antibody wipeout found to relieve chronic fatigue syndrome

By Andy Coghlan
01 July 2015

"I was completely revitalised," says Karen. "Suddenly, I could be sociable again. I would go to work, go home, eat dinner and feel restless."

Karen (not her real name) experienced this relief from chronic fatigue syndrome while taking a drug that is usually used to treat the blood cancer lymphoma and rheumatoid arthritis (see "Karen's experience", below).

She was one of 18 people with CFS who reported improvements after taking rituximab as part of a small trial in Bergen, Norway. The results could lead to new treatments for the condition, which can leave people exhausted and housebound.

Finding a cause for CFS has been difficult. Four years ago, claims that a mouse virus was to blame proved to be unfounded, and some have suggested the disease is psychosomatic.

The latest study implicates the immune system, at least in some cases. Rituximab wipes out most of the body's B-cells, which are the white blood cells that make antibodies.

Read more…

 
 
 

UK ME/CFS Teenager's Support Dog To Have Vital Hip Operation

International news

Wednesday 1 July 2015

 

From UK newspaper The Liverpool Echo:

Sophie Perkins with her mother Carolyn, veterinary surgeon Ben Keeley, and Hunter
Hunter the German Shepherd
is due to head to Runcorn
today for life-changing
surgery so he can continue
as chronic fatigue syndrome-
sufferer Sophie Perkins's
assistance dog.
Cambridgeshire teenager
Sophie, 16, is pictured
here with her mother
Carolyn and veterinary
surgeon Ben Keeley.

Teenager's support dog to have vital hip operation in Runcorn courtesy of vets group

By Oliver Clay-Le
18 June 2015

Cambridgeshire teen's hopes of helping beloved German Shepherd Hunter a step closer thanks to surgeons

A teenager with chronic fatigue syndrome (CFS) who launched a campaign to raise cash for her beloved German Shepherd to have vital hip surgery is over the moon after vets offered to carry out the operation in Runcorn.

Sophie Perkins, 16, has CFS – also known as ME – and relies on Hunter, who is an assistance in disability (AID) dog, to help her to do simple tasks including rising out of bed and for walking around the house.

The 22-month old pooch suffers hip dysplasia and arthritis in both pelvic joints and needs surgery before he loses function.

But, after becoming aware of Sophie’s campaign to raise up to £9,000 for the medical procedure, the Pets At Home Vet Group agreed to carry out the operations at its Northwest Surgeons specialist referrals centre at Delamere House in Sutton Weaver, funded in part by the £3,663 in cash raised so far.

Read more…

 
 
 

Diagnostic Methods For ME/CFS – A Systematic Review

International news

Tuesday 30 June 2015

 

From American News Report:

Brain

Fibromyalgia Considered Lifelong Central Nervous System Disorder

By Doug Lynch
28 June 2015

Fibromyalgia is now considered to be a central nervous system disorder, according to University of Michigan professor of anesthesiology, Daniel Clauw, M.D.

In a scientific session at the American Pain Society Annual Scientific Meeting, Dr. Clauw stated, “Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies,” said Dr. Clauw. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.”

A press release from the American Pain Society describes that “fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information.” The society notes that doctors should suspect fibromyalgia in people with musculoskeletal pain “that is not fully explained by injury or inflammation.”

Read more…

 
 
 

Researchers Compare Twins' DNA To Discover Fibromyalgia Diagnosis

International news

Monday 29 June 2015

 

From Fibromyalgia News Today:

Twins

Researchers Compare Twins’ DNA To Discover Fibromyalgia Diagnosis

By Isaura Santos
June 17th, 2015

Researchers from King’s College London are trying to develop an effective strategy to diagnose fibromyalgia by comparing the DNA of twins in which one has the disease and the other one does not.

Fibromyalgia is a pain syndrome that leads to widespread bone and muscle pain, fatigue and sleep disturbances. Its causes are not clear yet, making is very hard to diagnose, manage and treat. For many years doctors were not convinced on the existence of the disease, thinking it could be something conceived by the patient. Currently, there are no blood tests, x-rays or scans that can actually confirm this pain syndrome; however, some blood tests are used to rule out other conditions.

Using an Arthritis Research UK fund of £171,000, investigators from King’s College London, are developing a reliable blood test that can support a proper diagnosis. The team will assess samples from 400 twin volunteers (using the Twins UK Bioresource that enrolled 13,000 twins in which one has chronic widespread pain) in the hopes they can identify DNA biomarkers related to the condition. The goal is to compare healthy and affected twin’s DNA to understand fundamental genetic differences.

Read more…

 
 
 

Thieves Steal Mobility Scooter, Walking Stick

Australian news

Sunday 28 June 2015

 

From Australian newspaper the Newcastle Herald:

Geoffrey and Margaret Brown
Geoffrey Brown with
his wife Margaret.
Thieves stole his
mobility scooter.
(Picture: Ryan Osland)
 

Thieves steal mobility scooter, walking stick

By Sam Rigney
June 26, 2015, 9:45 p.m.

KURRI Kurri man Geoffrey Brown, 73, says he has lost his independence after thieves stole his mobility scooter and walking stick from outside his home on Wednesday.

Mr Brown suffers from myalgic encephalomyelitis, also known as chronic fatigue syndrome, a neurological illness which affects a person's nervous system and leads to overwhelming malaise as a result of minimal effort, as well as other chronic symptoms.

It's a painful existence, made a little more comfortable by the use of his second-hand mobility scooter. It gets him out of the house and up the street and facilitates his social life.

But on Wednesday [24 June], between 1pm and 4pm while Mr Brown was out, thieves stole his scooter from where it was charging in the car port of his Wermol Street home. His walking stick was also on the scooter.

Read more…

 
 
 

UK ME Sufferers Want To Set Up New Support Group

International news

Saturday 27 June 2015

From UK newspaper The York Press:

Bill Clayton and Odette Marshall
Bill Clayton and
Odette Marshall,
who both suffer from ME,
at Bill’s home in Fulford
(Picture: Nigel Holland)
 

York ME sufferers want to set up new support group

By Maxine Gordon
First published Wednesday 24 June 2015 in News
Last updated 18:37 Wednesday 24 June 2015

A new row is erupting over claims ME – or chronic fatigue syndrome – is all in the head. MAXINE GORDON speaks to two sufferers in York whose lives have been affected by the disease

IF you thought we’d come a long way from myalgic encephalopathy (or ME) being dismissed as “yuppie flu”, think again.

A new tussle has broken out between sufferers and their campaigners and the medical establishment following the release of the book It’s All In The Head by leading neurologist Suzanne O’Sullivan, in which one of the topics covered is ME.

It has sparked a robust response from the ME Association and Countess Mar, member of the House of Lords, who also suffers from the condition, pointing out that the disease is a neuro-immune disorder and not a psychological one. Since 2005, ME has been classed in the UK as a long-term neurological condition, following guidelines from the World Health Organisation.

Read more…

 
 
 

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

In the News


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