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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)

 

 

Fibromyalgia Patients Have Higher Risk For IBS

International news

Monday 30 March 2015

 

From Healio Rheumatology:

Healio
 

Patients with fibromyalgia have higher risk for IBS

Yang TY. Medicine. 2015;doi:10.1097/MD.0000000000000616.
March 23, 2015

The risk for developing irritable bowel syndrome was 1.54-times higher in patients with fibromyalgia, according to recently published data.

Researchers identified 33,729 patients with fibromyalgia (FM) and 134,915 patients without FM from Taiwan's national health insurance system between 2000 and 2011 based on ICD-9 codes. Patients with irritable bowel syndrome (IBS) at baseline were excluded. Every patient with FM was randomly frequency-matched to four patients without FM by age and sex.

The incidence of IBS in the patients without FM was 4.23 in men and 4.57 in women per 1,000 person-years. In the cohort of patients with FM, the incidence was 7.61 in men and 7.36 in women per 1,000 person-years, according to the researchers.

Read more…

 
 
 

New Research Validates Chronic Fatigue Sufferers

International news

Sunday 29 March 2015

 

From US newspaper the Herald Recorder:

Breaking News
 

Mayor Ras Baraka proclaims May 12 Fibromyalgia Awareness Day in Newark

Cyril Josh Barker
3/26/2015, 10:45 a.m.

Esther Siebert, who has chronic fatigue syndrome, moved to Nashville from California a year ago. She still travels back to California for therapy, possessing no luck discovering an internist locally who can aid.

Esther Siebert, 67, has been living with a draining and debilitating illness for practically 30 years, one particular that is only just recently becoming broadly recognized as one thing real. Most usually referred to as chronic fatigue syndrome, it is a disease lots of doctors have been unable to diagnose, though lots of sufferers have been created to really feel it was all in their head.

Siebert, who moved to Nashville from California a year ago, was fortunate that her condition was recognized pretty early on by an understanding medical professional. That isn't constantly the case.

"A lot of folks are in the closet about it simply because it has been so ridiculed and maligned and neglected," Siebert says.

But a report released in February proposing a name transform and diagnostic criteria, followed just a couple of weeks later with breaking investigation that scientists have found biomarkers for the illness, could change everything.

Read more…

 
 
 

US Mayor Proclaims May 12 Fibromyalgia Awareness Day

International news

Saturday 28 March 2015

 

From US newspaper the New York Amsterdam News:

Caterpillar Walk
 

Mayor Ras Baraka proclaims May 12 Fibromyalgia Awareness Day in Newark

Cyril Josh Barker
3/26/2015, 10:45 a.m.

Newark, N.J., Mayor Ras Baraka and local citizens are joining communities around the nation to raise awareness about Americans living with fibromyalgia.

Baraka recently proclaimed May 12 “Fibromyalgia Awareness Day.” The New York/New Jersey Caterpillar Walk at Hudson River Park is the first such walk taking place in the New York-New Jersey area.

The Caterpillar Walk has nearly 200 registered participants and will host a special performance by inspirational singer-songwriter Bobby Long. The walk will also feature presenters from NYU and the National Institute for Health, which join the efforts of the walk by talking about medical and research advancements and approaches to care for those living with fibromyalgia.

Read more…

 
 
 

Disabled UK Woman Says: Scooters Give Us Freedom, So Please Show Tolerance

International news

Friday 27 March 2015

 

From UK newspaper the Derby Telegraph:

Janet Warner
Janet Warner
 

Disabled Derby woman says: Scooters give us freedom so please show tolerance

By Janet Warner
Derby Telegraph
Posted: March 24, 2015

IN 1995, with Derby becoming more pedestrianised, I could no longer reach all the shops I needed to due to my own health problems.

There was only one solution – to join Derby Shopmobility and use a scooter. Once I started, I felt liberated. I could regain some of my independence.

That year, for the first time in 12 years, I was able to do my own Christmas shopping without relying on catalogues.

However, I soon found that some members of the public were not very tolerant of scooter users.

To that end, I have been spat on, verbally abused and nearly knocked off the vehicle I was using by someone pushing a pushchair in front of me and verbally abusing me, leaving me badly shaken. Fortunately, my husband was with me, reassuring me that the incident was not my fault.

On another occasion, while browsing in one of our major stores, someone pushed a wheelchair right behind me, leaving me no room to reverse out, then accused me of being a bad driver, and I shouldn't be on a scooter. To which I replied that she was wrong.

So please, if you do see scooter drivers, remember that we do have the right to be out and about just as you do. Remember that we cannot see you over A-boards, and you may not see us.

Read more…

 
 
 

Canadian Woman's Sensitivies Confine Her To House

International news

Thursday 26 March 2015

 

From Nova Scotia newspaper The News:

Wendy Kearly
Wendy Kearly
(Photo: Adam MacInnis
– The News)

 

Woman’s sensitivities confine her to house

Adam MacInnis
Published on March 23, 2015

Fears being forced to move into semi-detached unit will put her at risk

Wendy Kearly believes the only place she is safe is inside her home on Munroe Street in New Glasgow – and with some legitimate reasons.

Kearly has multiple chemical sensitivity, a disease that causes her to have an increased sensitivity to chemicals ranging from car exhaust to print on a paper. Even a trip to the hospital where she is exposed to people wearing perfume has caused her to be sick for days.

It’s so bad that sometimes she has to open her mail and leave it for a couple of days in the box to air out before reading it. Other times she uses a plastic sleeve to read it with.

She wears an industrial respirator when she leaves her home, but that is for a very limited time – about three hours – each month. That three hours is spent getting groceries and visiting doctors. The rest of her time is spent, for the most part, home alone.

“That three hours still makes me sick,” she said.

Read more…

 
 
 

US Vaccine Court's Tough Standards May Face Supreme Court Test

International news

Wednesday 25 March 2015

 

From US news outlet Bloomberg:

Scales of Justice
 

Vaccine Court’s Tough Standards May Face Supreme Court Test

By Andrew Zajac
7:31 PM ACDT March 18, 2015

(Bloomberg) -- The U.S. Supreme Court is being asked to decide whether people who suffer harmful vaccine side effects should have an easier time winning compensation from the government.

Congress created what’s known as the vaccine court in 1986, setting up a no-fault system to shield drug makers from crippling jury awards and compensate those who are hurt in the pursuit of a greater public good. The question about how the system works -- and whether more injured parties should get the benefit of the doubt -- is being raised as some contagious diseases including measles resurface and debate rages over whether vaccine skeptics should be allowed to choose not to have their children inoculated.

“The government is in a difficult position,” said Ed Kraus, a professor at the Chicago-Kent College of Law who represents plaintiffs in vaccine cases. He said the U.S. is walking a tightrope in trying to protect all Americans’ health as well as those few who have bad reactions to vaccines.

The court works well for many, he said, but when cases aren’t clear-cut “it’s not meeting the needs of people who have legitimate claims because the science is so complex and the burden of proof is high.”

The case the Supreme Court will this week consider taking was filed by the parents of Ilya Dobrydnev, who had a hepatitis B vaccination in 2001, when he was 10. He had a fever, swollen lymph nodes, inner ear inflammation and eventually debilitating memory loss. Now 23, he’s disabled by chronic fatigue syndrome.

Read more…

 
 
 

UK Fibromyalgia Sufferer To Complete Monumental Task

International news

Tuesday 24 March 2015

 

From UK newspaper the Wells Journal:

Rosina Thomas
Rosina Thomas
 

Wells muscle disease sufferer to complete monumental task

By Wells Journal
Posted: March 21, 2015

A WELLS woman is preparing to push through her personal pain barrier to help those facing a daily fight for survival.

Brave Rosina Thomas, who has severe fibromyalgia among a range of health issues, is aiming to walk 10,000 steps a day for a week – the equivalent of many miles – to raise money and awareness for safer water points in African villages.

She is taking part in the event called Walk in Her Shoes, and the distance represents that which women have to walk every day just to collect enough water to survive in some parts of Africa.

Read more…

 
 
 

Interview: UK Author Lucy Saxon On How Chronic Fatigue Syndrome Gave Her Time To Write

International news

Tuesday 17 March 2015

 

From UK newspaper the Herts & Essex Observer:

Lucy Saxon
Comic conventions fan
Lucy Saxon dressed
in homage to
Captain America
 

Interview: Stortford author Lucy Saxon on how Chronic Fatigue Syndrome gave her time to write

By Tom Durham
HertsAndEssexObserver
Posted: March 09, 2015

FOR a World Book Day special, the Observer spoke to Bishop's Stortford fantasy author Lucy Saxon, 20.

At just 18, the former Bishop's Stortford College student signed a three-book advance deal, worth almost £100,000, with Harry Potter publisher Bloomsbury – while suffering from a debilitating illness.The book lover wrote her first published novel, Take Back the Skies, in just three weeks while suffering a severe bout of chronic fatigue syndrome at the age of 16. Bedridden and rarely at school, she left the College after achieving top GCSE grades and has continued to write the Tellus book series from her bedroom in her family's Stortford home.

Tom Durham spoke to the self-confessed nerd and comic convention fan about how her illness gave her physical restraints, but provided her the freedom to pen a novel ...

Read more…

 
 
 

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

In the News


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