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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.

 

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…

 
 
 

Panel Recommends Medical Pot For Four More Diseases

International news

Saturday 14 January 2017

 

From US newspaper the Stamford Advocate:

 

Medical marijuana
(Photo: Brian A. Pounds, Hearst Connecticut Media)
 

Panel recommends medical pot for four more diseases

By Ken Dixon
Wednesday, January 11, 2017
Hearst Newspapers © Copyright 2017 Hearst Media Services Connecticut, LLC

HARTFORD -- People suffering from Muscular Dystrophy, rheumatoid arthritis, the pain of fibromyalgia and shingles should be allowed to join the state's [Connecticut] medical marijuana program.

That was the recommendation Wednesday from a panel of doctors. However, the group of physicians rejected three of the seven petitions — including for eczema, osteoarthritis and emphysema.

While not final action, the Board of Physicians' recommendation to Consumer Protection Commissioner Jonathan Harris will be reviewed and is likely to be ruled on over the next few weeks.

 

Full article…

 
 
 

'I Went From Being A Salsa Dancer To Someone Who Couldn't Put On My Own Socks'

International news

Friday 13 January 2017

 

From Irish newspaper The Independent:

 

Deirdre Ryan
Deirdre Ryan has lived with fibromyalgia and the
many setbacks it brings since she was 25.
(Photo: Colin O’Riordan)
 

'I went from being a salsa dancer to someone who couldn't put on my own socks'

With 13pc of the Irish population affected by chronic pain, Deirdre Ryan sheds a light on what it's like living with fibromyalgia and rheumatoid arthritis

By Deirdre Ryan
10/01/2017
© Independent.ie

This is not a sob story, I'm not trying to get your vote, or win The X-Factor. My story is one of hope and resilience. My journey started eight years ago when I was 25, with a very gradual dull pain in my lower abdomen and groin.

I was an active, typical 25-year-old. I salsa danced, worked out, travelled, and worked hard in an insurance company. I thrived on being busy and social. All my blood tests were clear, an X-ray was clear, and yet the pain, becoming sharper, didn't ease without analgesics.

Then the fatigue set in, a wash of lethargy that swept over me like a black glue where every movement was an effort and I began to ache. A bone ache deep in my joints, I was sensitive to even touch. My whole system went haywire.

 

Full article…

 
 
 

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

South Australian news

Friday 13 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…

 
 
 

Cognitive Dysfunction In Chronic Fatigue Syndrome, Molecular Pattern Discovered

International news

Thursday 12 January 2017

 

From Bel Marra Health:

 

Woman
 

Cognitive dysfunction in chronic fatigue syndrome, molecular pattern discovered, hopes for improved diagnosis and treatment

By Devon Andre
Monday, January 09, 2017
Copyright © 2017 BelMarraHealth. All Rights Reserved.

A molecular pattern has been discovered with regards to cognitive dysfunction in chronic fatigue syndrome, giving hope for improved diagnosis and treatment. The researchers uncovered a unique pattern of immune molecules in the cerebrospinal fluid in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This discovery provides insight into the basis for cognitive dysfunction – also known as brain fog – and may inform advancements in the syndrome diagnosis and treatment.

The researchers measured the levels of 51 immune biomarkers called cytokines in cerebrospinal fluid of 32 ME/CFS patients, 40 multiple sclerosis patients, and 19 healthy controls. The researchers found that the levels of most cytokines were depressed in ME/CFS patients, compared to the other groups.

 

Full article…

 
 
 

Chronic Fatigue Syndrome A Kick In The Guts

Australian news

Wednesday 11 January 2017

 

From the University of Melbourne's Pursuit:

 

Woman on a ledge
 

CHRONIC FATIGUE SYNDROME A KICK IN THE GUTS

Research suggests that chronic fatigue is linked to gut bacteria and how our bodies convert food into energy

By Florienne Loder, University of Melbourne

As the New Year gets going, are you still feeling tired and run down? Do you feel like you could sleep for a week and that you’ve reached the limit of your energy? Some regular sleep is probably all you need to revitalise you. But for some it’s nowhere near that simple.

What if your fatigue is so severe that you have had to substantially cut down on regular work, education or social activities?

This is what people with chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), experience. As the name implies, ME/CFS is a chronic, often severely disabling disease that comes with a myriad of symptoms rooted from the autonomic nervous system, immune system, endocrine system and gut. A good night’s sleep is not going to fix this severely debilitating disorder and treatments are hard to come by.

People with ME/CFS commonly experience headaches, muscle and joint pain, unrefreshing sleep, irregular heartbeat, shortness of breath and problems in thinking and memory. They may not be able to regulate body temperature, and experience visual disturbances and extreme photosensitivity, balance problems, and irritable bowel, among other symptoms.

ME/CFS is prone to being misdiagnosed, and there are concerns that many health care providers still mistake it for a mental condition. US medical research funding agency the National Institutes of Health announced in 2015 that it was increasing research funding into ME/CFS.

Chris Armstrong, a researcher at the University of Melbourne’s Bio21 Molecular Science and Biotechnology Institute and the Department of Biochemistry and Molecular Biology, is the lead author on some recent studies that associate metabolites and microbiota in faeces, blood and urine with ME/CFS.

 

Full article…

 
 
 

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