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ME/CFS Australia Ltd
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Society Seminars
Saturday 22 November 2014
Annual General Meeting
1 pm - 3 pm
Speaker: Dr Susan Cockshell
Details…
 
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PDF Application Form 2014 (PDF, 243KB)
Text Application Form 2014 (plain text)
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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.

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: 27 Scott Street, Toowoomba Qld 4350
Phone: (07) 4632 8173
Phone: (07) 4659 5239
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
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)

 

 

Brain abnormalities discovered in patients with Chronic Fatigue Syndrome

International news

Friday 31 October 2014

 

From IFLScience:

Brain
(Photo credit: Radiological
Society of North America
)
 

Brain Abnormalities Discovered in Patients With Chronic Fatigue Syndrome

By Lisa Winter
October 29, 2014

Up to 4 million Americans experience Chronic Fatigue Syndrome (CFS), which are periods of extreme fatigue lasting at least 6 months. A recent study published in Radiology by lead author Michael Zeineh of the Stanford University School of Medicine found that patients with CFS have a reduced amount of white matter in their brains, as well as abnormalities in both the white and gray matter of the right hemisphere.

CFS has been notoriously difficult to diagnose, as the symptoms are obscure and could apply to many other disorders. Though the symptoms can be intense and severely reduce quality of life, it is hard to definitively name CFS as the culprit.

“CFS is one of the greatest scientific and medical challenges of our time,” senior author Jose Montoya said in a press release. “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”

The researchers have been involved in long-term study of 200 CFS patients in hopes of developing new effective treatments. This quest has been difficult, as the disease had not previously turned up physical markers that medication would be able to target.

Read more…

 
 
 

Cognitive dysfunction of Fibromyalgia does not impair driving ability

International news

Thursday 30 October 2014

 

From ProHealth:

Road
 

Cognitive Dysfunction of Fibromyalgia Does Not Impair Driving Ability

By Sergey Shmygalev, et al.
www.ProHealth.com
October 28, 2014

Assessing Cognitive and Psychomotor Performance in Patients with Fibromyalgia Syndrome.

Abstract:

INTRODUCTION: Patients with fibromyalgia syndrome (FMS) generally present with chronic widespread pain, accompanied by a range of additional and non-specific symptoms, such as fatigue, disturbed sleep, and cognitive dysfunction, which tend to increase with overall severity. Previous studies have shown moderate cognitive impairment in patients with FMS, but there are few valid data explicitly assessing the relevance of these findings to everyday functions, such as driving ability. Therefore, we studied patients with FMS to assess the impact of FMS on tests that predict driving ability.

Read more…

 
 
 

Congressman Murphy convenes "Path 2 Cures" roundtable

International news

Wednesday 29 October 2014

 

From US news outlet The Almanac:

Dr. Pamela McInnes
Dr. Pamela McInnes,
a deputy director at
National Institutes of Health,
explains improvements,
but also troubles,
of clinical trials
and their publication.
(Photo: David Singer / Staff)
 

Congressman Murphy convenes “Path 2 Cures” roundtable

Published Oct 24, 2014 at 2:43 pm
(Updated Oct 24, 2014 at 2:43 pm)

Meeting in the Mt. Lebanon public safety building during a solar eclipse, patients and disease advocates told a deputy director of the National Institutes of Health they feel burned on how clinical trials are often left in publishing purgatory.

“We’re increasing how we share data, but it’s still shocking the number of trials that aren’t finishing or being published ... that’s dooming us to repeat trials and we don’t know what happened last time,” deputy director of translational sciences Dr. Pamela McInnes said.

A roundtable of advocates and health professionals representing everything from mitochondrial and rare genetic disorders, to common diseases like diabetes, was gathered by Congressman Tim Murphy (R-Upper St. Clair) on Oct. 23 to get feedback on how to improve the discovery of new medicines and deliver treatments out of trial stage sooner.

Read more…

 
 
 

Fibromyalgia sufferer: 'I can't escape the pain'

International news

Tuesday 28 October 2014

 

From Scottish newspaper The Sunday Express:

Sarah Pollard
Sarah Pollard suffers from
incurable disease,
Fibromyalgia
(Photo: Mike Wilkinson)
 

Fibromyalgia sufferer: 'I can't escape the pain'

FOR years, Sarah Pollard suffered a mystery muscle complaint that made every day a struggle. Finally she got a diagnosis – but with a sting in the tail

By: Sarah Smith
Published: Sun, October 26, 2014

Sarah, 45, lives in Whithorn, Dumfries and Galloway, with her children Tom, 16, Dan, 14, and Emma, 10. She says:

“I’ve always been a very physical person, having worked on farms all my life. I’d work seven days a week in all weathers and do everything from lambing and logging to looking after bullocks. I used to suffer bouts of fatigue, and there was a suggestion that I had ME [myalgic encephalopathy, also known as chronic fatigue syndrome], but I always managed to work full-time. I could cope if I slept for 10 hours each night, so I always made sure I went to bed early.

At 29, when I became pregnant with my first son Tom, I was worried about how I would cope. But during all three of my pregnancies I felt fantastic, with loads of energy. I managed to look after all the children with ease when they were young. I counted my blessings that I’d recovered from whatever had made me so tired in the past.

But then, in 2011, it came back. It began quite gradually – one day I would be OK but the next I’d be exhausted. Everything became an effort. It was like wading through a muddy field – my legs felt as heavy as lead and I’d shuffle rather than walk. Then my knees began to ache. It was tremendously painful, as though there wasn’t enough elasticity in my joints. I’d lie in bed wondering what was happening to me.

Read more…

 
 
 

Article in major psychology journal seeks to dispel myths about CFS

International news

Monday 27 October 2014

 

From the Solve ME/CFS Initiative:

Beyond Tired
 

Article in APA Monitor Reaches 130,000 Professionals in the Field of Psychology, Seeks to Dispel Myths about CFS

October 23, 2014

The Monitor on Psychology is a well-respected publication of the American Psychological Association (APA) – the largest scientific and professional organization representing psychology in the United States. According to its website, “APA is the world’s largest association of psychologists, with nearly 130,000 researchers, educators, clinicians, consultants and students as members.”

http://www.apa.org/about/index.aspx

In May of this year a freelance reporter, Kirsten Weir, contacted the Solve ME/CFS Initiative (SMCI) concerning an article she was writing about Chronic Fatigue Syndrome for the Monitor. She was hoping we could get her in touch with a patient that could answer a few short questions about living with the disease.

Understanding that far too many ME/CFS patients have been adversely affected by the painful practice of dismissing ME/CFS as a psychological disorder vs treating it as the debilitating physiological disease that it is, we asked her to tell us more about the goal of her article. In her reply she told us, “The goal of the article is to update readers on the latest thinking behind ME/CFS — to underscore that it has biological roots and is not a psychological condition. To look at what the science says about possible causes and best approaches to managing the disease. I’ve spoken to several researchers who noted that patients are really frustrated by the myths and misunderstandings associated with the disease, and I’m aiming to find some patients who can speak to that issue.”

With that understanding, we reached out to several patients to inquire as to their willingness and availability to talk to Ms. Weir for her article. Anna Zapp and Carollynn Bartosh both agreed to be interviewed via email, thrilled that the interview pointed to the American Psychological Association acknowledging bio-organic roots of ME/CFS. Bartosh remarked, “It’s been a very long time in coming, and I am honored to be asked for an interview as a patient under the circumstances.”

Read more…

 
 
 

More evidence needed on benefits of BT, HT in Fibromyalgia management

International news

Sunday 26 October 2014

 

From Healio Rheumatology:

Healio
 

More evidence needed on benefits of BT, HT in fibromyalgia management

Naumann J. Arthritis Res Ther. 2014. doi:10.1186/ar4603.

Results of a literature review on management of fibromyalgia showed more high-quality studies with larger sample sizes and a focus on long-term results and maintenance of the beneficial effects are needed to confirm the therapeutic benefit of balneotherapy and hydrotherapy.

Through April 2013, researchers performed a systematic literature search of Medline via Pubmed, Cochrane Central Register of Controlled Trials, EMBASE and CAMBASE for randomized, controlled trials that highlighted a broad range of balneotherapeutic (BT) and hydrotherapeutic (HT) treatments, and calculated standardized mean differences and 95% confidence intervals using a random-effects model.

Read more…

 
 
 

Fibromyalgia sufferer creates successful doll clothing business

International news

Saturday 25 October 2014

 

From Californian news outlet Santa Clarita News:

 

American Planet
 

Santa Clarita Mom Creates American Girl Doll Clothing Biz

A Santa Clarita mom and former girl scout leader has created her own business by hand-making and selling earth-friendly American Girl doll clothing.

Posted by: Jessica Boyer
October 23, 2014

Char Nathanson, 55, who has been sewing since she was 10 years old, founded American Planet in April of this year.

American Girl clothes are expensive,” she said. “I was researching Etsy and found that there weren’t any doll clothes that were eco-friendly, either. Instead of buying new fabrics from store, I look for things gently worn from thrift stores or remnants from fabric stores.”

Read more…

 
 
 

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

In the News


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