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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:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-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 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 2016
Saturday 20 February 2016
1:30pm
Topic: Dr Katia Ferrar and Ms Minh Pham from the University of South Australia will discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”, which relates to determining parameters for ME/CFS activity incapacity, and how this will help to develop treatment options.

Saturday 9 April 2016
1:30pm

Saturday 25 June 2016
1:30pm

Saturday 27 August 2016
1:30pm

Saturday 19 November 2016
Annual General Meeting
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
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
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)

 

 

Senator Scott Ludlam On ME/CFS Research Funding In Australia

International news

Friday 12 February 2016

 

From Australian Greens Senator Scott Ludlam (via Facebook):

 

Senator Scott Ludlam
Senator Scott Ludlam
 

Senator Scott Ludlam

Health bureaucrats just sharply revised down estimates of how much research funding goes into trying to understand Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). They then clarified that there is no other Commonwealth support out there, either for people dealing with this condition, or for GPs. It is time this changed.

Posted by Senator Scott Ludlam on Wednesday, February 10, 2016

If you cannot see the video, please click here.

Read more…

 
 
 

Fibromyalgia Symptoms Often Go Undiagnosed In Men

International news

Friday 12 February 2016

 

From Bel Marra Health:

Man
 

Fibromyalgia symptoms often go undiagnosed in men

By Devon Andre
Wednesday, February 10, 2016

Fibromyalgia can be a complex problem to diagnose, especially in men, as symptoms often go unreported. Information on men and fibromyalgia is far scarcer than on women and fibromyalgia, and women are far more likely to receive a fibromyalgia diagnosis, compared to men.

Lead author Ann Vincent said, “Health care providers may not think of this diagnosis when face to face with a male patient with musculoskeletal pain and fatigue. These findings need to be explored further.”

The researchers identified over 3,000 patients, whose medical records looked as if they may have fibromyalgia. The researchers also randomly surveyed adults using the American College of Rheumatology’s fibromyalgia research survey criteria, which cover the main characteristics of fibromyalgia. There were 830 survey respondents, and 44 of them met the criteria for fibromyalgia, even though only a dozen had been diagnosed.

Read more…

 
 
 

Dr Robert K Naviaux Joins The Open Medicine Foundation's ME/CFS Scientific Advisory Board

International news

Thursday 11 February 2016

 

From the Open Medicine Foundation (via email):

Dr Robert K Naviaux
Dr Robert K Naviaux
 

OMF welcomes Dr. Robert K. Naviaux, newest Scientific Advisory Board member

Thursday February 11, 2016

We’ve captured the interest – and will now benefit from the experience, knowledge, and skills – of another esteemed scientific expert.

Dr. Robert K. Naviaux has joined our ME/CFS Scientific Advisory Board and is internationally known for his work in human genetics, metabolism, metabolomics, and mitochondrial disease.

Having Dr. Naviaux join our team fits the pattern we set last year: create a scientific advisory board of noted experts in the biology systems that could be contributing to ME/CFS symptoms. These well-known researchers and doctors bring with them their network of relationships with labs and other scientists–and their knowledge and prestige–so we can move the research from the fringe and shadows into an exciting and respected field. And most of all, get fast results.

Read more…

 
 
 

Suicide Six Times More Likely In ME/CFS Patients Compared To General Population

International news

Thursday 11 February 2016

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.

 

From Medical Xpress:

Sunshine
 

Suicide six times more likely in chronic fatigue syndrome patients compared to general population

February 10, 2016

People diagnosed with chronic fatigue syndrome (CFS) are more likely to die by suicide than the general population, but overall mortality rates for people with CFS are comparable to the general population, according to a new study from researchers at the Institute of Psychiatry, Psychology & Neuroscience at King's College London.

CFS, sometimes referred to as myalgic encephalomyelitis (ME), is a serious disorder in which patients experience persistent fatigue, which can lead to long-term disability if left untreated.

The study, published in The Lancet, used sophisticated data-mining techniques to analyse the medical records of over 2000 people diagnosed with CFS accessing the national research and treatment service for at South London and Maudsley NHS Foundation Trust and King's College London. It is the largest ever analysis of the causes of death in people with CFS, and the first to suggest that people with CFS may be at an of .

Read more…

 
 
 

Medicinal Cannabis In Australia A Step Closer

Australian news

Wednesday 10 February 2016

 

From The Guardian Australia:

Medical marijuana
A worker with cannabis plants
to be used in pharmaceuticals
at a farm near the northern
Israeli town of Safed.
Medicinal cannabis products
are mostly imported to
Australia in the absence of
a nationally consistent
licensing scheme for growers.
(Photograph: Abir Sultan/epa/Corbis)
 

Medicinal cannabis a step closer with legislation to allow cultivation

Health minister Sussan Ley says a bill to allow cannabis to be grown for use in medical trials will be introduced on Wednesday and passed this sitting

By Australian Associated Press
Wednesday 10 February 2016

Patients suffering chronic and painful illnesses are a step closer to accessing medicinal cannabis.

Legislation allowing the controlled cultivation of the plant for medicinal or scientific purposes through a national scheme will be introduced to parliament by the Turnbull government on Wednesday.

Health minister Sussan Ley wants the laws passed in this sitting, saying it will open the way for sick Australians to get access to relief.

Read more…

 
 
 

Obituary: Robert J Suhadolnik, ME/CFS and AIDS researcher

International news

Wednesday 10 February 2016

 

From US newspaper, Philadelphia's The Inquirer:

Robert J. Suhadolnik
Robert J. Suhadolnik
 

Dr. Robert J. Suhadolnik, 90, Temple biochemist

By Bonnie L. Cook, Staff Writer
Sunday, February 7, 2016

Dr. Robert J. Suhadolnik, 90, of Roslyn, a biochemist renowned for his research on AIDS and chronic fatigue syndrome, died Tuesday, Jan. 26, at Abington Memorial Hospital.

Through much of his career, Dr. Suhadolnik was a professor in the biochemistry department at Temple University School of Medicine, now the Lewis Katz School of Medicine. From a laboratory there, he and a half-dozen colleagues spent decades analyzing irregularities in immune-system pathways in patients with those conditions.

In the case of HIV, the researchers were seeking a treatment alternative for the infection, which typically mutates quickly and defeats the body's natural antiviral defenses. They developed a way to immunize against the spread of HIV through gene therapy, according to an account of the work in the Temple News. The therapy would replicate the target cells, with the introduced genes lying dormant until an infectious particle was encountered. They then would swing into action and produce antibodies to zap the infection.

Read more…

 
 
 

Fibromyalgia Incidences Low In Acute Whiplash Injury: Study

International news

Tuesday 9 February 2016

 

From Bel Marra Health:

Woman with whiplash
 

Fibromyalgia incidences low in acute whiplash injury: Study

By: Emily Lunardo
General Health
Friday, February 05, 2016

Fibromyalgia incidences are low in acute whiplash injury. Fibromyalgia is a chronic pain condition, which affects women more than men. Little is known about the exact cause of fibromyalgia, but there are many circulating theories behind the cause.

Research suggests that fibromyalgia results in a change in the central nervous system, which increases pain perception. Genetics, emotional stress, physical trauma, or infection can contribute to this change.

One study found that experiencing whiplash injury could result in some cases of fibromyalgia. The researchers of the study found that one-quarter of the participants reported experiencing a serious physical trauma which triggered fibromyalgia. Infections, too, contributed to fibromyalgia, including flu, pneumonia, and Epstein-Barr virus.

Read more…

 
 
 

US National Institutes Of Health Recruiting For Major ME/CFS Study

International news

Tuesday 9 February 2016

 

From the US National Institutes of Health:

National Institutes of Health
 

PROTOCOL DETAILS

Summary

Background:

Post-infectious chronic fatigue syndrome (PI-CFS) refers to long-lasting fatigue and inability to exercise that can occur after a person has an infection. It can also cause pain, sleep problems, depression, and anxiety. Researchers want to learn more about its causes.

Objective:

To learn more about PI-CFS.

Eligibility:

Adults ages 18 60 who have finished at least 7th grade and either:

have CFS that started after an infection

OR had Lyme disease, were treated, and don't have fatigue symptoms

OR have a functional movement disorder

OR are healthy volunteers

Read more…

 
 
 

Welsh Teenager's Skydive Inspired By "Hero" Mum's Condition

International news

Monday 8 February 2016

 

From Welsh newspaper News North Wales:

Holly Kirkby with mum Joanne
Holly Kirkby with mum Joanne.
 

Abergele teenager’s high dive inspired by "hero" mum’s condition

By Suzanne Jordan
3 February 2016

A DAUGHTER’S love for her “hero” mum is to take her 10,000ft up in the air for charity.

Courageous Holly Kirkby, aged 17 of Abergele, will take on a skydive to raise money for Fibromyalgia Action UK. Holly’s mum Joanne, aged 44, suffers with fibromyalgia, a long-term condition that causes severe pain all over the body and fatigue.

Holly, who will attend the site of the skydive with her dad Andrew, aged 51, sister Alex, aged 19, Alex’s boyfriend Craig and friends, has been helping to look after for her mum since she was diagnosed in 2003. Joanne, a former conference manager in a hotel, was first diagnosed with ME and Chronic Fatigue. When her symptoms worsened, she was diagnosed with Fibromyalgia and Chronic Fatigue in 2008.

Holly will take on her skydive on July 9. She is also hoping to raise awareness of the chronic condition.

Read more…

 
 
 

Help! I'm Allergic To My New Audi

International news

Monday 8 February 2016

 

From UK newspaper The Yorkshire Post:

Dr Geoffrey Evans
Dr Geoffrey Evans from Barnsley,
is allergic to his new Audi.
(Picture: Ross Parry Agency)
 

Help! I’m allergic to my new Audi

Friday 5 February 2016

A DOCTOR who paid nearly £20,000 [AUS$41,000] for a brand new car can only take it for a spin once a week, for 40 minutes at a time - because he is allergic to it.

Dr Geoffrey Evans, 64, gets a “stinging, burning sensation” across his entire body every time he takes his £18,000 Audi A1 for a drive.

Dr Evans, from Barnsley, has a PhD in combustion chemistry, and says it is the formaldehyde found in the car’s upholstery and plastics which is the catalyst - despite being initially told by an Audi salesman that their cars did not contain the chemical.

He said: “Obviously, it is a nightmare. It’s not the best thing to come of buying a new car because I can’t use it that much.”

Read more…

 
 
 

5 "Do's" For A Better Relationship With A Fibromyalgia/ME/CFS Doctor

International news

Sunday 7 February 2016

 

From About.com Health:

Doctor and patient
 

5 "Do's" for a Better Relationship with a Fibromyalgia/ME/CFS Doctor

By
February 3, 2016

Why Is It So Hard?

When you have fibromyalgia or chronic fatigue syndrome, it's important to work closely with your doctor(s) to find the treatment regimen that works for you. Sadly, a lot of us struggle to build good relationships with our doctors.

Why is that? It could be that the doctor doesn't "believe" these conditions are real or doesn't know enough about them to treat you. It could also be that you've had bad experiences and go into appointments expecting problems.

While you can only take responsibility for 50% of that relationship, if you can be a better patient, it may enable your doctor to be better, as well.

That doesn't mean always agreeing with the doctor and doing exactly what he/she says. Rather, it's a way of approaching your appointments and the relationship itself. The 5 Do's in this article can help you have more productive appointments so you can work toward a good doctor-patient relationship and, most importantly, more effective treatments.

Read more…

 
 
 

Medical Whistleblower Dr Judy Mikovits Shares Her Story With Dr Rebecca Risk

International news

Sunday 7 February 2016

 

From SBWire VoiceAmerica:

Dr Judy Mikovits
Dr Judy Mikovits
 

Medical Whistleblower Dr. Judy Mikovits Shares Her Story with Dr. Rebecca Risk

Source: Posted Monday, February 01, 2016 at 3:22 PM CST - Permalink

Phoenix, AZ -- (SBWIRE) -- 02/01/2016 -- On July 22, 2009, a special meeting was held with twenty-four leading scientists at the National Institutes of Health to discuss early findings that a newly discovered retrovirus was linked to chronic fatigue syndrome (CFS), prostate cancer, lymphoma, and eventually neurodevelopmental disorders in children. When Dr. Judy Mikovits finished her presentation the room was silent for a moment, then one of the scientists said, "Oh my God!"

This was the start of a controversial debate about the XMRV retrovirus. After being wrongfully jailed, Dr. Mikovits was under a court sanctioned gag order for four years because she refused to destroy the data. She is now a speaking out about the link of XMRV retrovirus and its suspected link to Chronic Fatigue Syndrome, Myalgic Encephalopathy (CFS/ME) and cancer. Her research shows that 6% of the U.S. population is harboring a retrovirus in their bodies that can develop into an acquired immune deficiency. The book "Plague: One Scientist's intrepid Search For the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases" documents her story about this legal drama, dishonest and ill informed criticism.

Read more…

 
 
 

Reexamining Chronic Fatigue Syndrome Research And Treatment Policy

International news

Saturday 6 February 2016

 

From the Health Affairs Blog:

Doctor and patient
 

Specialised services for young people with CFS needed across Sussex

David Tuller
February 4, 2016

In recent months, two developments have provided some degree of optimism to people with the illness variously called chronic fatigue syndrome, myalgic encephalomyelitis (“inflammation of the brain and central nervous system, with muscle pain”), CFS/ME, and ME/CFS — the term often used these days by U.S. agencies. Taken together, these developments herald the welcome possibility of significant changes in research and treatment policies for the illness, which is estimated to afflict between 1 and 2.5 million people in the U.S. They also reinforce a critical but often overlooked point: patients can possess far more wisdom about their condition than researchers and policymakers guided by their own biases and misperceptions.

Read more…

 
 
 

Introducing Mary Dimmock's Summary: 'Thirty Years Of Disdain'

International news

Saturday 6 February 2016

 

From ME Advocacy:

"Unthinking respect for authority is the greatest enemy of truth." - Albert Einstein
 

Introducing Mary Dimmock's Summary: 'Thirty Years of Disdain'

By Gabby Klein 83.60SC
February 2, 2016

“If you want to understand today, you have to search yesterday." ~Pearl S. Buck

In order to understand the enigma of a hidden epidemic of one million men, women and children in the U.S. suffering from the debilitating disease, myalgic encephalomyelitis, one needs to understand the history of the disease.

Hillary Johnson wrote the epic book ‘Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic’ where she depicts the history of the disease, spending nine years investigating the failure of the medical establishment to take the disease seriously as well as repeated governmental health agency malfeasance. Her book documents the history from 1984 to 1995.

Since then, there has been a lack of documentation recording the history of events and actions that reflect the concerted institutional effort to bury the disease ME. Mary Dimmock, ME advocate, along with her son, Matthew Lazell-Fairman, who suffers from severe ME, stepped up to the plate with their document, ‘Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis’ (full version).

Read more…

 
 
 

Specialised Services For Young People With CFS Needed Across Sussex

International news

Saturday 6 February 2016

 

From UK newspaper The Argus:

Stethoscope
 

Specialised services for young people with CFS needed across Sussex

Arron Hendy, Assistant News Editor
Tuesday 2 February 2016

A NEW study into young people with chronic fatigue syndrome highlights the need for more specialised services, the Sussex ME Society claims.

One in fifty 16-year-olds are affected by chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME), according to the study released at the beginning of the week by researchers from the University of Bristol.

Dr Esther Crawley, the senior author of the report and a medical advisor to the Sussex ME Society, said: “This is an important study because it shows that CFS/ME is much more common in teenagers than previously recognised.”

Read more…

 
 
 

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

In the News


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