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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,
North Terrace House
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm
Closed over Christmas
(reopened 1 February 2017)

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/CFS Primer for Clinical Practitioners: 2014 Edition

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: 1300 128 339
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.

 

Fibromyalgia Patient Outcomes Can Be Improved, 2-Year Prospective Study Reveals

International news

Saturday 21 January 2017

 

From Fibromyalgia News Today:

 

Diagnosis Fibromyalgia
 

Patient Outcomes Can be Improved, 2-Year Prospective Study Reveals

By Alice Melao
January 18, 2017
Copyright © 2013-2017 All rights reserved.

Fibromyalgia is a disease that can impact the quality of life of patients severely, but its actual long-term health outcome is still unpredictable. Now, a two-year study that assessed clinician and patient-reported outcomes among fibromyalgia patients reveals this patient population can experience certain health improvements.

The study, titled “Fibromyalgia Outcomes Over Time: Results from a Prospective Observational Study in the United States,” was published in The Open Rheumatology Journal.

 

Full article…

 
 
 

A Psychosomatic Diagnosis Is A Doctor's Way Of Saying, "I Don't Have A Clue"

International news

Friday 20 January 2017

 

From Quartz:

 

Doctor
"The honest truth? I have no idea."
(Photo: Reuters/Carlos Barria)
 

A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”

By Jamison Hill
January 13, 2017

For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”

I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.

The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.

 

Full article…

 
 
 

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

South Australian news

Friday 20 January 2017

 

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…

 
 
 

Heartbreaking Letter From A UK Woman With Fibromyalgia

International news

Thursday 19 January 2017

 

From UK newspaper the Bristol Post:

 

Peyton Connor
Peyton Connor
 

Heartbreaking letter from a Bristol woman who suffers from debilitating disease fibromyalgia

By Michael Yong
January 16, 2017
Copyright © 2017 Local World. All Rights Reserved.

What happens when your life starts to unravel?

For 23-year-old Peyton Connor, that happened last May when she was diagnosed with fibromyalgia.

The long-term chronic condition can cause increased sensitivity to pain, extreme fatigue, difficulty sleeping and memory loss.

After collapsing at work at the end of 2015, several tests revealed she had the condition, which has changed her life completely.

The condition can cripple, can cause people to fall into isolation. Some sufferers lose their social life altogether.

Here, Peyton pens a heartbreaking letter to those closest to her.

A Letter to my Loved Ones (What I Wish You Knew)

Dear family, dear friends, ...

 

Full article…

 
 
 

Jennifer Brea's TED Talk

International news

Wednesday 18 January 2017

 

From Jennifer Brea (via email):

 

Jennifer Brea
Jennifer Brea
 

My TED Talk on illness, gender bias, and the unknown

By Jennifer Brea
January 17, 2017
Copyright © 2016 Jennifer Brea, All rights reserved.

Dear friends,

The talk I gave at last summer's TED Summit has just gone live on TED.com. I am so thrilled to finally be able to share it with you.

"Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat."

Next stop: the Sundance Film Festival! We're so excited to be premiere Friday. Follow our journey on Facebook and Twitter.

Much love,

Jen

Support UNREST

We couldn't do this without you. UNREST has been made possible through the generous support of thousands of donors all around the world. We are currently fundraising for outreach and audience engagement. With your help, we'll build a team to ensure the film reaches the audiences and influencers best positioned to help us create change and accelerate science. Thank you for your support!

Donate

 

Web page of the email…

 
 
 

Possible Mechanism Identified For Chronic Fatigue Syndrome

International news

Tuesday 17 January 2016

 

From Medscape:

 

Test tubes
 

Possible Mechanism Identified for 'Chronic Fatigue Syndrome'

By Miriam E. Tucker
January 13, 2017
Copyright © 1994-2017 by WebMD LLC. 

Blockage of a key metabolic enzyme could explain the profound lack of energy and other symptoms experienced by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new research suggests.

The findings were published December 22, 2016, in the Journal of Clinical Investigation Insight by Øystein Fluge, MD, from the Department of Oncology and Medical Physics at Haukeland University Hospital, Bergen, Norway, and colleagues.

The study included 200 patients with ME/CFS, as defined by the 2003 Canadian Consensus Criteria, which requires the hallmark symptom of postexertional malaise, among others, to make the diagnosis of ME/CFS. The authors compared serum concentrations of 20 standard amino acids from the 200 patients with ME/CFS and 102 healthy control patients.

In the patients with ME/CFS, there was a specific reduction of amino acids that fuel oxidative metabolism, pointing to functional impairment of pyruvate dehydrogenase (PDH), a key enzyme for the conversion of carbohydrates to energy. Impairment of PDH could result in the cells switching to consumption of alternative fuels, causing a sudden shortage of energy in the muscles and a buildup of lactate, experienced by patients as a burning sensation in their muscles after even minor exertion.

 

Full article…

 
 
 

ME/CFS Protester Interrupts Canadian Health Minister's Event

International news

Monday 16 January 2017

 

From Canadian newspaper the Markham Economist & Sun (via YorkRegion.com):

 

Scott Simpson (left) Jeffrey Smith (centre with hat), and Jane Philpott (right)
Philpott Protesters for Myalgic Encephalomyelitis
Health minister Jane Philpott, right, held a meet-and-greet
at the Markham District Veterans Association building
on Jan. 14. Scott Simpson (left) and Jeffery Smith
(centre with hat) are part of a planned protest.
Protesters want more funding and a change of
thinking towards the neurological illness.
(Photo: Steve Somerville/Metroland)
 

Protester interrupts Health Minister Jane Philpott's event in Markham

Advocates want more funding, awareness for Myalgic Encephalomyelitis

By Simone Joseph
January 14, 2017
© Copyright 2017 Metroland Media Group Ltd. All Rights Reserved.

Local protesters crashed health minister Jane Philpott's meet-and-greet event in Markham Saturday.

Scott Simpson, one of the protesters, suffers from ME (Myalgic Encephaloigmyelitis), otherwise known as chronic fatigue syndrome.

He and fellow protesters wanted Philpott to commit to making an announcement declaring ME a biological disease, not psychosomatic as some people describe it. He was also hoping Philpott would declare a national strategy on dealing with the disease.

But when Simpson and Philpott spoke, the minister pointed out people like Simpson approach her every week about different diseases and she can’t make announcements about them all.

“Almost every week, I have a different group of advocates that come to me speaking about specific syndromes, or disease conditions or health issues asking for a national strategy,” Philpott told Simpson, adding she is not convinced that a national strategy for every specific medical condition is helpful.

 

Full article…

 
 
 

Differing Case Definitions Point To The Need For An Accurate Diagnosis Of ME/CFS

International news

Sunday 15 January 2017

 

From the medical journal Fatigue: Biomedicine, Health & Behaviour (via Taylor & Francis Online):

 

Questionnaire
 

Differing case definitions point to the need for an accurate diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome

Luis Nacul, Caroline C. Kingdon, Erinna W. Bowman, Hayley Curran & Eliana M. Lacerda
Pages 1-4 | Published online: 08 Jan 2017
Copyright © 2016 Informa UK Limited

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterised by unexplained and persistent or recurrent incapacitating fatigue accompanied by a variety of symptoms and substantial reductions in previous levels of occupational, educational, social and/or personal activity. Given the absence of biomarkers for diagnosis, ME/CFS is defined by a combination of symptoms, most of which are non-specific and common to a number of diseases and conditions.

Over 20 case definitions have been proposed, leading to large variations in sensitivity and specificity of diagnosis. These diverse sets of diagnostic criteria and distinct ways in which they have been applied pose significant problems, as research results may vary considerably according to which definition is used.

 

Full article…

 
 
 

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