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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)

 

 

Reflections On The Institute Of Medicine's Systemic Exertion Intolerance Disease

International news

Wednesday 29 July 2015

 

From ProHealth:

Institute of Medicine
 

Reflections on the IOM’s systemic exertion intolerance disease

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

By Leonard A. Jason et al.

Abstract

The Institute of Medicine (IOM) in the US has recently proposed that the term Systemic Exertion Intolerance Disease (SEID) replace Chronic Fatigue Syndrome (CFS). In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls.

A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses.

Read more…

 
 
 

Watching "Cake" A Painful, But Validating Experience

International news

Tuesday 28 July 2015

 

From US news outlet Lancaster Online:

Jennifer Aniston and Chris Messina in Cake
Jennifer Aniston stars as
Claire Bennett in 2014's "Cake."
Pictured with Jennifer Aniston
is co-star Chris Messina.
(Photo Courtesy cakemovie.net)
 

Unscripted: Watching 'Cake" a painful, but validating experience

By JENELLE JANCI | Staff Writer
Posted: Sunday, July 26, 2015 10:00 am
Updated: 5:26 pm, Sun Jul 26, 2015.

When a movie I’ve been wanting to see comes to Netflix, I usually add it to “My List” and forget about it. It sits in digital limbo for months, sometimes until Netflix removes it.

When “Cake” was added, however, I watched it immediately.

I remember my disbelief when I first heard about “Cake.” How would a filmmaker accurately portray chronic pain, an often invisible illness?

Of course, Jennifer Aniston’s character has an extreme form of the disease. It’s an understandable artistic choice: There has to be a visual manifestation of her pain for the audience to connect.

Aniston, sans makeup for most of the film, barely looks like herself as Claire Bennett. In almost every scene, she shows her pain, whether in a stiff gait or seemingly constant frown.

But it’s easy to forget how many chronic pain sufferers choose not to show their daily struggle.

Read more…

 
 
 

Oral Colostrum For ME/CFS

International news

Monday 27 July 2015

 

From ProHealth:

Glass of milk
 

Oral Colostrum Macrophage-activating Factor for Serious Infection and Chronic Fatigue Syndrome: Three Case Reports

By T. Inui et al.
www.ProHealth.com
July 24, 2015

Abstract

BACKGROUND: Gc protein-derived macrophage-activating factor (GcMAF) immunotherapy has been steadily advancing over the last two decades. Oral colostrum macrophage-activating factor (MAF) produced from bovine colostrum has shown high macrophage phagocytic activity. GcMAF-based immunotherapy has a wide application for use in treating many diseases via macrophage activation or for use as supportive therapy.

Read more…

 
 
 

Canadian Drivers With Fibromyalgia More Likely To Be Involved In Serious Traffic Accidents: Study

International news

Sunday 26 July 2015

 

From Canadian newspaper the Toronto Sun:

Patient
 

Drivers with fibromyalgia more likely to be in serious traffic crashes: Study

By Sheryl Ubelacker
The Canadian Press
First Posted: Friday, July 24, 2015 01:12 PM EDT
Updated: Friday, July 24, 2015 01:20 PM EDT

TORONTO -- Drivers who have been diagnosed with fibromyalgia appear to have an elevated risk of being involved in motor vehicle crashes, even years after their initial diagnosis, research suggests.

A study in the July issue of the Journal of Rheumatology found that individuals with fibromyalgia had more than twice the risk of being in a serious automobile accident that sent them to a hospital emergency room, compared with the driving population as a whole.

"We're not looking at the sort of fender-benders here," said principal researcher Dr. Donald Redelmeier, a senior scientist at the Institute for Clinical Evaluative Sciences (ICES) in Toronto.

Fibromyalgia is a syndrome that affects at least 400,000 Canadians, but the numbers may be much higher. The condition, which disrupts nerve function, causes fluctuating symptoms, such as muscle pain, fatigue, insomnia, and joint stiffness.

There is no known cure, but symptoms can be treated with medications, lifestyle changes and stress management. The exact cause is unknown, but in some cases, trauma caused by a motor vehicle accident has been linked to subsequent onset of symptoms.

Read more…

 
 
 

New Syndrome Links Anxiety And Physical Disorders

International news

Saturday 25 July 2015

 

From Medscape Multispecialty:

Stethoscope
 

New Syndrome Links Anxiety and Physical Disorders

Liam Davenport
July 22, 2015

Patients with anxiety disorder may suffer from a range of comorbid physical conditions that constitute a novel syndrome, say US researchers, who claim that the syndrome has been overlooked by physicians who have previously dismissed the connections as simply somatic disorders.

ALPIM (anxiety, laxity, pain, immune, mood) is an acronym for anxiety and the domains of its most commonly occurring comorbidities: joint laxity, pain disorders, immune disorders, and mood disorders.

Testing the prevalence of the comorbid domains in patients with anxiety disorder, it was found that their prevalences were far higher than those seen in the general population. Furthermore, there were a number of significant associations between disorders within the domains.

"Our results provide further evidence to support a possible common pathophysiologic pathway toward the development of a related set of psychiatric and physical conditions, which were previously considered and, in certain instances, were unrelated," the investigators write.

Read more…

 
 
 

Fibromyalgia Sleep Study

International news

Friday 24 July 2015

 

From US news outlet the Savannah Morning News:

Dr Victor Rosenfeld
Dr. Victor Rosenfeld
at SouthCoast Health
(Photo: Steve Bisson/
Savannah Morning News)

 

Local doctor fighting fibromyalgia

By ANNA AKINS
Posted: July 21, 2015 - 10:56pm
Updated: July 22, 2015 - 12:42am

SouthCoast Health’s Dr. Victor Rosenfeld’s recently published a sleep study that simplifies the diagnosis for fibromyalgia, could improve pain and stress as well as address the lack of sleep in patients affected by the syndrome.

Rosenfeld, head of the neurology department and medical director at SouthCoast Health, had his study published in the Journal of Clinical Neurophysiology’s April 2015 edition.

Rosenfeld tested nearly 500 patients with and without fibromyalgia in a sleep lab. While the patients slept, Rosenfeld observed their brain waves through a process known as quantitative EEG and utilized the process to monitor the patients’ alpha waves.

The brain creates alpha waves while it is awake, Rosenfeld said. He detected alpha waves in the vast majority of fibromyalgia patients but did not in those without fibromyalgia.

“Even though people with fibromyalgia are technically asleep, their brain waves look more like they’re awake,” Rosenfeld said. “In essence, people with fibromyalgia are pulling an all-nighter every single night.”

Read more…

 
 
 

Kayla's Recovery Story

International news

Friday 24 July 2015

 

From ProHealth:

Kayla
Kayla
(Photo: Aroga Yoga)
 

Kayla's Recovery Story

By Kayla
www.ProHealth.com
July 22, 2015

My journey with Chronic Fatigue Syndrome began when I was 13 years old. I had been an active child, always playing on my school sports teams, and a competitive swimmer. One day in swim practice, I stopped being able to move properly in the water. I didn’t feel tired. I felt like a truck had run me over and I couldn’t move my limbs. I am forever grateful for my excellent floating skills that got me out of the pool. Nobody seemed to know what was wrong with me as I went from doctor to doctor. My grades began dropping and my physical health continued to decline.

Six months later, I was finally diagnosed with Chronic Fatigue Syndrome. I didn’t know what that meant, and neither did my parents. They began researching and doing what they could to help me, but nobody seemed to know how to make it better. By the time I was 16 I had trialled more sleeping medications than I could count. At least I could sometimes sleep through the night. I hated taking the medication, but it allowed me to fumble my way through the rest of high school and get a university degree. I know for many with CFS that is still a huge accomplishment. I am very grateful that I was able to finish my education, yet during my time in school, I was surviving and not thriving — and my performance in school suffered for it.

Read more…

 
 
 

Alcohol And Fibromyalgia

International news

Thursday 23 July 2015

 

From UK news outlet the Mirror:

Beer
Good health: Beer in moderation
can soothe chronic pain
 

Alcohol helps cut disability caused by chronic pain from conditions like fibromyalgia say scientists

Reseachers found that people who drank the equivalent of two pints of beer a day were better off than those who did not touch a drop

By Ian Fletcher
17:21, 21 July 2015

Two pints of beer a day could help to reduce disability in people with chronic pain, according to a new report yesterday.

In a study of 2,239 individuals with chronic widespread pain, the key feature of conditions such as fibromyalgia, those who regularly consumed alcohol had lower levels of disability than those who never or rarely drank.

Those who drank 21 to 35 units of alcohol per week were 67 per cent less likely than non-drinkers to experience disability.

“We cannot say that alcohol consumption causes less disability among people with chronic widespread pain.

“But the observed link warrants further investigation,” said Dr Gary Macfarlane, co-author of the Arthritis Care & Research study, who is professor of epidemiology at the University of Aberdeen.

Read more…

 
 
 

The 50/10 Guide For Fibromyalgia Mobility

International news

Thursday 23 July 2015

 

From ProHealth:

Risk Ahead sign
 

The 50/10 Guide for Fibromyalgia Mobility

By Sue Ingebretson
www.ProHealth.com
July 20, 2015

Do studies that point to potentially tragic consequences of living with chronic illness worry you? Studies have linked fibromyalgia to numerous additional challenges such as depression, dementia, osteoporosis, premature aging, disability, and more. I’m all for fostering awareness of potential risks, but what about awareness regarding prevention?

I remember witnessing a heated group discussion at a fibromyalgia support group. The topic at hand was a study linking stress and fibromyalgia. The conversation started with the finer points of the study defining the difference between stress and chronic stress.1 Agitation increased as group members shared their own stories of stress in a seemingly “mine is worse than yours” fashion. They shared their experiences and frustrations, relating in unison that nothing could be done. The sense of hopelessness and anxiety in the auditorium was palpable.

I finally stood and asked if anyone had practical strategies to counteract the effects of stress. Even better, I wondered if the study had shared ways to prevent stress in the first place. My questions were met by silence and blank stares.

Finally, the support group leader said, “We’re discussing the fact that fibromyalgia and stress go hand in hand. We have to plan ahead for how stress brings on flares and makes our symptoms worse. It’s not like we can change anything.”

I knew right then, that was not the right group for me.

Read more…

 
 
 

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

In the News


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