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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.

 

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…

 
 
 

Trial By Error, Continued: The Real Data

International news

Saturday 24 September 2016

 

From Virology Blog:

 

Virology Blog
 

Trial By Error, Continued: The Real Data

By David Tuller, DrPH
22 September 2016
© Belfast Telegraph

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley.

‘The PACE trial is a fraud.’ Ever since Virology Blog posted my 14,000-word investigation of the PACE trial last October, I’ve wanted to write that sentence. (I should point out that Dr. Racaniello has already called the PACE trial a “sham,” and I’ve already referred to it as “doggie-poo.” I’m not sure that “fraud” is any worse. Whatever word you use, the trial stinks.)

Let me be clear: I don’t mean “fraud” in the legal sense—I’m not a lawyer–but in the sense that it’s a deceptive and morally bankrupt piece of research. The investigators made dramatic changes from the methodology they outlined in their protocol, which allowed them to report purported “results” that were much, much better than those they would have been able to claim under their originally planned methods. Then they reported only the better-looking “results,” with no sensitivity analyses to analyze the impact of the changes—the standard statistical approach in such circumstances.

This is simply not allowed in science. It means the reported benefits for cognitive behavior therapy and graded exercise therapy were largely illusory – an artifact of the huge shifts in outcome assessments the authors introduced mid-trial. (That’s putting aside all the other flaws, like juicing up responses with a mid-trial newsletter promoting the interventions under investigation, failing to obtain legitimate informed consent from the participants, etc.)

 

Full article…

 
 
 

Fibromyalgia Finally Recognised As Long-Term Condition In Northern Ireland

International news

Saturday 24 September 2016

 

From Irish newspaper the Belfast Telegraph:

 

Alliance's Paula Bradshaw
Alliance's Paula Bradshaw
 

Fibromyalgia is recognised as a condition

By Staff Reporter
22 September 2016
© Belfast Telegraph

Fibromyalgia has finally been recognised as a long-term condition in Northern Ireland.

The illness, which mainly affects women, causes pain all over the body and can be difficult to diagnose.

Paula Bradshaw, an Alliance MLA, warned that without further health service reforms, victims would still not get the treatment they need.

 

Full article…

 
 
 

"Froggy Frog And The Pain Gang" Book Launch

South Australian news

Friday 23 September 2016

 

From Facebook:

 

Foggy Frog and the Pain Gang
 

Foggy Frog and the Pain Gang by Megan Schartner : BOOK LAUNCH

Event: 24 September 2016

One in five people live with an invisible illness causing chronic pain and fatigue. It can be difficult to explain these symptoms to others but Foggy Frog and the Pain Gang can help.

This long awaited picture book has been developed to help raise awareness of invisible illnesses in the wider community.

Come and celebrate the launch of Foggy Frog and the Pain Gang with its author, Megan Schartner, and Dignity for Disability MLC Kelly Vincent. We are please to be launching the book in time for the start of Invisible Illness Awareness Week 2016, which runs from 26 September to 2 October 2016.

Join us on Saturday 24 September from 1:30pm at Burnside Library for light refreshments, a live story reading and book signing.

Books will be available for purchase on the day.

There will be chairs available during the event, however if it would make you more comfortable feel free to bring along a cushion to sit on.

 

Full article…

 
 
 

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

South Australian news

Friday 23 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…

 
 
 

Bad Science Misled Millions With Chronic Fatigue Syndrome. Here's How We Fought Back

International news

Thursday 22 September 2016

 

From STAT:

 

"Extreme Fatigue" by Eros Dervishi
(Image: Eros Dervishi for Stat)
 

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

New research finds a striking similarity

By Julie Rehmeyer
September 21, 2016

If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad.

 

Full article…

 
 
 

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

International news

Thursday 22 September 2016

 

From ME Action:

 

ME Action
 

PATIENTS’ REANALYSIS SINKS PACE’S “RECOVERY” CLAIMS

New research finds a striking similarity

By
September 21, 2016
Copyright © 2015 The Myalgic Encephalomyelitis Action Network, All Rights Reserved

Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover.

Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, applied the study authors’ own pre-planned analyses that they had abandoned after the trial had finished.

Working with independent statisticians and other patients with mathematical expertise, he showed that only 7% of the cognitive behavioural therapy group, 4% of the graded exercise group, and 3% of a no-therapy comparison group recovered. Differences between the groups were within chance variation, indicating no effect of the therapies.

 

Full article…

 
 
 

US ME/CFS Advocates Obtain Congressional Support For Strengthened Research At NIH

International news

Wednesday 21 September 2016

 

From Newser:

 

U.S. House of Representatives
 

Advocates Obtain Congressional Support for Strengthened ME/CFS Research at NIH

New research finds a striking similarity

By SCMI
www.ProHealth.com
September 10, 2016
© 2016 ProHealth, Inc. All rights reserved.

Press release: SCMI, LOS ANGELES, September 9, 2016 – After years of neglect by the National Institutes of Health (NIH), patients suffering from myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), created a win today as members of Congress came together urging the NIH to do the right thing and strengthen ME/CFS research.

In a formal U.S. House of Representatives letter published today (“the letter”), 55 members of Congress called upon NIH Director Francis Collins to strengthen the NIH’s efforts in ME/CFS biomedical research through a reinvigorated trans-NIH ME/CFS working group as well as additional intramural and extramural research programs.

 

Full article…

 
 
 

People With Chronic Fatigue May Be Fighting 'Hibernation'

International news

Wednesday 21 September 2016

 

From Newser:

 

Drugs
File photo of some of the many medications one woman
with CFS takes. She needs a wheelchair much of the time.
(AP Photo/The Cincinnati Enquirer, Jeff Swinger)
 

People With Chronic Fatigue May Be Fighting 'Hibernation'

New research finds a striking similarity

By Elizabeth Armstrong Moore, Newser Staff
September 10, 2016
© 2016 Newser, LLC. All rights reserved.

(NEWSER) – Chronic fatigue syndrome is a debilitating but still mysterious ailment often marked by long-term fatigue, pain, and memory loss. But symptoms of CFS, or myalgic encephalomyelitis, vary considerably and no cause has been determined or diagnostic test developed—leading to the widespread notion that patients are dealing with a mental, rather than physical, illness, notes Pacific Standard.

Now a study out of the University of California at San Diego published in the Proceedings of the National Academy of Sciences could change that in a big way. As the Washington Post explains, the research suggests that the bodies of those with CFS have gone into a hibernation of sorts. And while hibernation can be of great benefit to creatures in the wild, it has awful effects in humans.

 

Full article…

 
 
 

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