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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:
Suite 506,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

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 various research projects, diets, medications, therapies, news items, 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 2016
Saturday 20 February 2016
1:30pm
Dr Katia Ferrar and Ms Minh Pham from the University of South Australia discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”.

Saturday 9 April 2016
1:30pm
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016
1:30pm
Dr Ian Buttfield discusses the ANRES website.
Mr Max Nelson discusses his PhD and two-day bike test study.
Dr Katia Ferrar presents an information document on her research.

Saturday 27 August 2016
Annual General Meeting
1:30pm
Dr Bruce Wauchope gives an update on a proposed ME/CFS clinic [download pamphlet], and talks about the stepped, problem-solving approach to their treatment protocol.

Saturday 19 November 2016
1:30pm
Dr Rachel Wells talks about the new Autonomia Clinic at the Royal Adelaide Hospital and what they are doing about POTS and other dysautonomia symptoms common in ME/CFS.
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

ME/CFS Guidelines for GPs
(SA Department of Health)
(English)

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)
(German)

PDF

ME/CFS Guidelines for psychiatrists

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)
 
Australian ME/CFS Societies
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: 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 & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
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
Support line: (08) 8346 3237 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VICTORIA
TASMANIA
NORTHERN TERRITORY

Emerge Australia
Web: emerge.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

 

Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.

 

Independent Investigation Reveals NICE Approved Treatment Only A Fraction As Effective As Experts Claim It Is

International news

Saturday 1 October 2016

 

From HealthInsightUK:

 

HealthInsightUK
 

Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.

By Jerome Burne
26 September 2016
Copyright © 2016 — HealthInsightUK. All Rights Reserved.

Would any doctor continue to prescribe a drug which they had been told would benefit 20 per cent of patients with a specific illness, once the truth was revealed to be around 7 per cent, only one percent better than no treatment at all? You’d have to hope not and that concerned and angry doctors would then shout loudly that they had been lied to and that patients had endured years of pointless treatment.

Something like this has just been discovered about the official treatment for a condition that affects an estimated 150,000 people in the UK. Many are bedridden or on disability allowance and refusing to follow this NICE-approved treatment, can lead to a withdrawal of benefits.

The condition is Myalgic Encephalitis (ME) or Chronic Fatigue Syndrome (CFS) and the discovery that exercise plus psychotherapy are effectively useless was the result of a remarkable and very unexpected legal victory last month. It’s potentially a grave embarrassment for several senior psychiatrists and the Lancet, a respected medical journal.

 

Full article…

 
 
 

MillionsMissing: A Hidden Epidemic And A Day Of Action

Australian news

Friday 30 September 2016

 

From The Huffington Post Australia:

 

Millions Missing
 

MillionsMissing: A Hidden Epidemic and a Day of Action

By Rivka Solomon
September 29, 2016
Copyright © 2016 The Huffington Post Australia Pty Ltd. All rights reserved.

A hidden epidemic has swept the globe -- and your neighborhood is not immune. In its wake are millions of lives ruined. Its silent victims are all ages, from all backgrounds and in every state across America: Up to 99,000 in Illinois, 152,000 in New York and 211,000 in Texas. There is no prevention, no treatment and no cure for this barely acknowledged disease that gets barely any government funding.

In total, there are 1 million to 2.5 million in the US, 17 million worldwide, whose lives have been devastated due to the most serious neuroimmune disease you never knew existed: Myalgic Encephalomyelitis (ME).

With up to 76,000 in Michigan, 79,000 in Georgia and 300,000 in California, these numbers make up the millions of people missing out on their lives, all because of ME. And I am one of them.

 

Full article…

 
 
 

South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants

South Australian news

Friday 30 September 2016

 

From the South Australian Health and Medical Research Institute (via email):

 

SAHMRI
 

South Australian Health and Medical Research Institute (SAHMRI)

Research participants wanted

Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.

Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.

If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.

What is the purpose of this study?

To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.

 

Read more…

 
 
 

100 Pairs Of Shoes Used To Make Poignant Protest On ME Research In Bristol City Centre

International news

Thursday 29 September 2016

 

From UK newspaper the Bristol Post:

 

Shoes
 

100 pairs of shoes used to make poignant protest on ME research in Bristol city centre

By David Clensy
September 27, 2016

A hundred pairs of shoes were laid out on College Green in a poignant silent protest against the lack of funding for research into the causes of ME, also known as Chronic Fatigue Syndrome (CFS).

Each pair of shoes represented a sufferer of ME who was unable to attend the rally in Bristol city centre, but was too exhausted as a result of their condition to attend in person.

 

Full article…

 
 
 

Invisible – Fibromyalgia Film Closer To The Screen

International news

Thursday 29 September 2016

 

From National Pain Report:

 

Invisible: The Film
 

Invisible – Fibromyalgia Film Closer to the Screen

By Ed Coghlan
September 27, 2016

It is a film about fibromyalgia – a long overdue treatment of this terrible pain syndrome.

The film is called (appropriately) Invisible: The Film.

Desperate to help his mother fight her symptoms, filmmaker Nick Demos (and Tony Award-winning producer) meets a young athlete, a human rights advocate, a migrant on disability, and a woman whose life is cut too short – all in different stages of Fibromyalgia.

 

Full article…

 
 
 

ME Affects Four Times As Many Women As Men. Is That Why We're Still Disbelieved?

International news

Wednesday 28 September 2016

 

From The Guardian:

 

Shoes
Many ME patients are too ill to take part in the day of action
on 27 September, so they will leave pairs of shoes in
public places as a symbol of the millions of lives
gone unlived, jobs undone, relationships never formed.’
(Photograph: Millions Missing.)
 

ME affects four times as many women as men. Is that why we’re still disbelieved?

Sexism is part of the reason why people with ME struggle to get diagnosed and treated. We need more funding for research into this disabling condition.

By Nathalie Wright
Tuesday 27 September 2016
© 2016 Guardian News and Media Limited or its affiliated companies. All rights reserved.

Today [Tuesday 27 September] friends and families of people with myalgic encephalopathy (ME) are taking to the streets of cities around the world to call for more funding for medical research and education about ME. I am joining them at the London demonstration of the Millions Missing campaign, outside the Department of Health.

Many ME patients are too ill to take part the global day of action, so instead they will leave pairs of shoes in public places as a visual symbol of the millions of lives gone unlived, jobs undone, relationships never formed by people with the disease.

 

Full article…

 
 
 

Phenome-Wide Association Study Of Rheumatoid Arthritis Subgroups Identifies Association Between Seronegative Disease And Fibromyalgia

International news

Wednesday 28 September 2016

 

From Arthritis & Rheumatology:

 

Arthritis & Rheumatology
 

Phenome-Wide Association Study of Rheumatoid Arthritis Subgroups Identifies Association between Seronegative Disease and Fibromyalgia

Jayanth Doss MD, MPH1,*,
Huan Mo MD, MS2,
Robert J. Carroll PhD3,
Leslie J. Crofford MD4 and
Joshua C. Denny MD, MS5

DOI: 10.1002/art.39851

Author Information:
1Duke University, Rheumatology and Immunology
2Loma Linda University Medical Center, Pathology
3Vanderbilt University, Biomedical Informatics
4Vanderbilt University, Division of Rheumatology and Immunology
5Vanderbilt University, Biomedical Informatics and Medicine

© 2016, American College of Rheumatology

Abstract

Objective: The differences between seronegative and seropositive rheumatoid arthritis (RA) have not been widely reported. We performed electronic health record (EHR)-based phenome-wide association studies (PheWAS) to identify disease associations in seropositive and seronegative RA.

 

Full article…

 
 
 

Rows Of Empty Shoes Will Represent Chronic Fatigue Syndrome Sufferers At Millions Missing

International news

Tuesday 27 September 2016

 

From UK newspaper the Oxford Mail:

 

Zoe Williams
Zoë Williams, who lives in Stanford in the Vale near
Wantage, was diagnosed with Chronic Fatigue Syndrome
when she was 13, and has spent most of her life in bed.
She is now 40.
 

Rows of empty shoes outside the Radcliffe Camera, Oxford will represent Chronic Fatigue Syndrome sufferers at Millions Missing

By Pete Hughes
Monday 26 September 2016
©Copyright 2001-2015

MORE than a hundred pairs of shoes will be lined up outside the Radcliffe Camera in Oxford tomorrow [Tuesday 27 September] to represent sufferers unable to attend a demonstration to raise awareness for one of the most debilitating and least understood conditions of our time.

The Millions Missing protest at midday on Tuesday will aim to kickstart a national conversation about Chronic Fatigue Syndrome (CFS), a condition which can leave sufferers housebound for decades but is still almost a complete mystery.

More than 100 Oxfordshire sufferers who would love to attend and show their support will not be able to: instead, as with similar events taking place across the world today, they will ask friends or family to take an item of clothing to represent them.

Among those who will be sending a pair of shoes is Zoë Williams from Stanford in the Vale near Wantage.

 

Full article…

 
 
 

Volunteers Wanted For UniSA Research

South Australian news

Tuesday 27 September 2016

 

From the University of South Australia's Max Nelson (via email):

 

University of South Australia
 

UniSA 2-day testing study

Researchers at the University of South Australia are looking for ME/CFS sufferers and healthy controls aged 18-65 to take part in a study which aims to investigate how non-invasive heart rate measures can be used to monitor post-exertional malaise. The study employs a 2-day maximal testing protocol, which has previously been shown to provide information on post-exertional malaise in ME/CFS patients, and may in addition be able to provide evidence on a reliable biomarker within the ME/CFS population.

Testing will all take place at the University of South Australia High Performance and Exercise Physiology Clinic located at the UniSA City-East campus on the corner of North Terrace and Frome Road. Testing will consist of one short familiarisation session (45 minutes), and two maximal testing sessions (90 minutes each). The maximal testing sessions need to be completed on consecutive days.

 

Read more…

 
 
 

Insurance Firm Stops Making Payments To Retired School Teacher Suffering From Chronic Fatigue Syndrome, Court Hears

International news

Monday 26 September 2016

 

From Irish news outlet Independent.ie:

 

The High Court, Dublin
The High Court, Dublin
 

Insurance firm stops making payments to retired school teacher suffering form Chronic Fatigue Syndrome, court hears

By Aodhan O Faolain
29 September 2016
© Independent.ie

An insurance company stopped making payments to a retired secondary school teacher, who suffers from Chronic Fatigue Syndrome, because she refused to undergo a test it had requested, the High Court has heard.

Bridget Majella Daly has brought proceedings against Zurich Life Assurance  over the insurer's decision to cease paying her a disability allowance she claims she is entitled to. 

The 48 year old mother of three of The Chase, Clonmel, Co Tipperary, has suffered from a condition known as ME or Chronic Fatigue Syndrome for many years and has been deemed medically unable to work by the Dept of Education.

Ms Daly says that through the ASTI she signed up to a salary protection scheme with Zurich who ceased paying her benefits in April last and informed her that her case was under review. 

As a result she decided to sue Zurich.

 

Full article…

 
 
 

Is Your Gut Bacteria Wearing You Out?

International news

Monday 26 September 2016

 

From dailyRx News:

 

Board meeting
 

Is Your Gut Bacteria Wearing You Out?

Gut bacteria has been linked to chronic fatigue syndrome, Cornell study finds.

By Emma Fortel
September 23, 2016
Copyright © 2016 dailyRx® News Network, Inc. All Rights Reserved.

Chronic fatigue syndrome has puzzled physicians for decades. New research suggests an unlikely culprit may be causing chronic fatigue—the gut.

According to a press release issued by Cornell University, researchers have identified biological markers for chronic fatigue syndrome in gut bacteria and inflammatory microbial agents in the blood.

Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by intense fatigue that doesn’t go away with rest, according to the Centers for Disease Control and Prevention (CDC). In addition to fatigue, CFS can cause muscle pain, impaired memory and insomnia. There are no known causes for CFS and no tests for doctors to diagnose CFS.

This study is the first to identify biological markers for CFS. In an unprecedented study, the research team was able to correctly diagnose chronic fatigue syndrome in 83 percent of patients using stool samples and blood work.

 

Full article…

 
 
 

Son Taken On Fitness Challenge For Mum's Fibromyalgia Battle

International news

Sunday 25 September 2016

 

From UK newspaper the North Somerset Times:

 

Gail and Danny Lane
Danny Lane with his mum, Gail.
 

Son taken on fitness challenge for mum’s fibromyalgia battle

A Clevedon man is taking part in a series of fitness challenges in support of his mum who suffers from a painful muscular condition.

By Liam Jones
14 September 2016
© 2016 Archant Community Media Ltd

Danny Lane, aged 30, has been tackling a variety of crossfit events which include a mixture of power-lifting, gymnastics and jump training in an effort to replicate the pain his mum, Gail, experiences as a result of her 21-year battle with fibromyalgia.

Danny, who trains at the Crossfit Ozbox gym, will complete his final two challenges on September 24 and 25 when he will also run the Bristol Half Marathon.

...

To follow the campaign, log on to www.facebook.com/FibromyalgiaChallenge.

 

Full article…

 
 
 

Chronic Fatigue Sufferers Getting The Wrong Treatment – Thanks To A Falsified Study

International news

Sunday 25 September 2016

 

From What Doctors Don't Tell You:

 

Man holding head
 

Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study

By Bryan Hubbard
12 September 2016
© 2010 - 2016 WDDTY Publishing Ltd. All Rights Reserved

Sufferers of chronic fatigue syndrome (CFS) are not getting the proper treatment. The standard approach these days is cognitive behavioural therapy (CBT)—known as the ‘talking therapy’, which implies the problem is mainly in the sufferer’s head—but this is based on a landmark study whose results were falsified, it has been revealed this week.

The PACE study had concluded in 2011 that 61 per cent of sufferers were getting well on CBT and exercise—but the numbers who really benefited had been inflated three-fold by researchers.

 

Full article…

 
 
 

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