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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
A screening of the ME/CFS documentary, Forgotten Plague.

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)

 

 

NSW Event On May 12 To Raise ME/CFS Awareness

Australian news

Wednesday 4 May 2016

 

From New South Wales newspaper The Advertiser Lake Times:

Ainslie Eccleston
AWARENESS CAMPAIGN: Ainslie Eccleston is
encouraging people to be a superhero for ME/CFS
and support the Undies on the Outside campaign.
 

Shellharbour event on May 12 to raise ME/CFS awareness

By Agron Latifi
May 2, 2016

Copyright © 2016. Fairfax Media.

Ainslie Eccleston would rather look silly and wear her underwear on the outside than suffer an “invisible illness’’ in silence.

The Albion Park Rail resident has been battling Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since 2006.

ME/CFS affects around 17 million people worldwide. It is a neuro-immune condition with wide ranging symptoms including profound and disabling fatigue and pain.

The Undies on the Outside Challenge is encouraging supporters to shine a spotlight on the invisible nature of the illness by revealing what usually stays hidden.

Full article…

 
 
 

Antiviral Combo May Be Next Blockbuster Fibromyalgia Drug

International news

Wednesday 4 May 2016

 

From National Pain Report:

Skip Pridgen, MD
Skip Pridgen, MD
 

Antiviral Combo May be Next Blockbuster Fibromyalgia Drug

By Donna Gregory Burch
May 2, 2016

Copyright 2016 National Pain Report

A general surgeon with a small practice in Tuscaloosa, Alabama, Dr. William “Skip” Pridgen admits he’s an unlikely creator for the next blockbuster fibromyalgia drug.

But the U.S. Food and Drug Administration (FDA) has fast tracked Pridgen’s novel pairing of famciclovir (Famvir), a common antiviral, with celecoxib (Celebrex), an anti-inflammatory arthritis drug, for a phase III trial next year. Based on data from a 2014 phase II trial, the combo known as IMC-1 could give some stiff competition to Lyrica and Cymbalta, two of the most profitable drugs prescribed for fibromyalgia.

Full article…

 
 
 

Fibromyalgia May Affect Sensory Perception And Blunt Touch Perception, Studies Show

International news

Wednesday 4 May 2016

 

From Bel Marra Health:

Woman wrist
 

Fibromyalgia may affect sensory perception and blunt touch perception, studies show

By Emily Lunardo
Wednesday, April 27, 2016

Copyright © 2016 BelMarraHealth. All Rights Reserved.

Fibromyalgia affects sensory perception and blunts touch perception. The findings of the study reveal that there is abnormal processing of signals in C-type skin nerves (associated with the perception of touch) in fibromyalgia.

The researchers from the National Center for Complementary and Integrative Health looked into whether fibromyalgia patients rated the perception of touch differently than healthy individuals. The study also looked into the opioid signaling in fibromyalgia.

Previous research has found that fibromyalgia sufferers have a smaller count of opioid receptors in the brain, which aid in pain signaling and mediate feelings of reward to natural behaviors.

Full article…

 
 
 

Spain Continues To Take Steps For Multiple Chemical Sensitivity

International news

Tuesday 3 May 2016

 

From Spain's Servicio de Información sobre Sensibilidad Química Múltiple y Salud Ambiental ("Multiple Chemical Sensitivity and Environmental Health Information Service"):

María José Moya
María José Moya, head of the SISS
and a severe MCS sufferer
(Photographer: Nekane Lazkano)
 

SPAIN CONTINUES TO TAKE STEPS FOR MULTIPLE CHEMICAL SENSITIVITY, the disease of the "bubble people" — official press release

1 May 2016

© Servicio de Información sobre Sensibilidad Química Múltiple y Salud Ambiental

Those affected cannot tolerate many of the chemicals that are used in our everyday lives

Spain continues to take steps for Multiple Chemical Sensitivity, the disease of the "bubble people"

  • In 2014 the Ministry of Health included MCS in the 9th edition of the International Classification of Diseases (ICD), which until December 31st 2015 was the reference system for classifying and coding diagnoses in the health system.
  • In this way Spain joined the list of countries that recognize the illness. This had been done before by Germany (2000), Austria (2001), Japan (2009), Switzerland (2010) and Denmark (2012), and later Finland (2014).
  • Until that moment, Spain had not classified MCS, and therefore it did not exist from an administrative point of view. This involved "a complete defencelessness situation" for the sufferers, as stated in the Explanatory Memorandum to the Non Law Proposition that originated the inclusion of MCS in the ICD.

MADRID, APRIL 30th, 2016

Spain has incorporated Multiple Chemical Sensitivity (MCS) to its new International Classification of Diseases or ICD, released on January 1st 2016 under the name of ICD-10-ES. Spain has thus consolidated its official recognition of the disease (expressed in 2014 through its explicit desire to include it in the existing classification at the time); and reaffirms its interest in moving forward for official protection of sufferers.

The procedures have been carried out by MP María del Carmen Quintanilla, member of Popular Party (PP) in collaboration with the Multiple Chemical Sensitivity and Environmental Health Information Service (SISS).

Full article…

 
 
 

Chronic Fatigue And Suicide: An Alarming Trend

International news

Tuesday 3 May 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 dailyRx News Network:

dailyRx News
 

Chronic Fatigue and Suicide: An Alarming Trend

Suicide rates among those with chronic fatigue syndrome could increase six-fold, King's College London study finds.

By Neha Kashyap
May 2, 2016

Copyright © 2016 dailyRx® News Network, Inc. All Rights Reserved.

Chronic fatigue syndrome (CFS) could lead to deadly results when it comes to mental health, a new British study has found.

According to researchers from King's College in London, while overall deaths as a result of CFS are not increasing, the rate of mortality as a result of suicide is.

Chronic fatigue syndrome is the condition of never-ending fatigue that does not improve with rest and worsens with activity. Symptoms include persistent exhaustion, muscle weakness, memory problems and insomnia, according to the US Centers for Disease Control and Prevention. Risk factors include a weakened immune system, viral infections, stress and possibly diet. The condition is normally diagnosed after six months of symptoms.

In this study authors combed through data from the National Health Service, the British public health system. After analyzing data from those diagnosed with chronic fatigue from 2007 to 2013, the researchers discovered an alarming trend: a six-times greater likelihood of suicide as compared to the general population in England and Wales.

Full article…

 
 
 

The Grim Reality Of Being A 15-Year-Old Girl And Living With Chronic Fatigue Syndrome

International news

Monday 2 May 2016

 

From Wales Online:

Sarah Griffiths and, right, pictured with her mum
Sarah Griffiths and, right, pictured with her mum
 

The grim reality of being a 15-year-old girl and living with chronic fatigue syndrome

Sarah Griffiths has had to drop four GCSE subjects and leave school because of her condition

By 
1 May 2016

© 2016 Media Wales Ltd

Typical teenager Sarah Griffiths was enjoying a promising modelling career before being struck down with a condition which has left her struggling to even leave the house.

The 15-year-old passionate horserider’s life has been turned upside down after she was diagnosed with chronic fatigue syndrome or ME which stands for myalgic encephalomyelitis.

Full article…

 
 
 

Underwear Goes On The Outside For Charity

International news

Monday 2 May 2016

 

From the White House Chronicle:

Ron Davis
Ron Davis, ME Undies Challenge
 

UNDERWEAR GOES ON THE OUTSIDE FOR CHARITY

By
April 28, 2016

Ronald Davis is a respected professor of biochemistry and genetics at Stanford University, and director of its Genome Technology Center. So why is a picture of him wearing his underwear over his pants superhero-style circulating on social media?

Davis is not alone. Others are joining in making themselves look ridiculous every day.

Looking silly for a serious cause

The answer is that Davis is a research scientist whose son is severely afflicted with Myalgic Encephalomyelitis (ME), better known as Chronic Fatigue Syndrome — a name that dismisses the severity of this little understood and understudied disease that has devastated the lives of perhaps 1 million Americans, and what are calculated to be 17 million people worldwide.

Taking a selfie with underwear worn over outerwear is a new campaign, “Undies on the Outside,” to raise money — desperately needed money — for research on ME.

Full article…

 
 
 

Bridges And Pathways: ME/CFS Multidisciplinary Clinical and Research Centre

South Australian news

Sunday 1 May 2016

 

From Bridges & Pathways:

Bridges & Pathways
 

Bridges & Pathways

ME/CFS Multidisciplinary Clinical and Research Centre

Copyright © 2016 Bridges & Pathways. All Rights Reserved.

Bridges & Pathways is working with the South Australian ME/CFS/FMS Clinical and Research Collaboration (doctors, allied health, practice nurses, university students, researchers, primary healthcare agencies and consumer groups) to improve services and research for people with ME/CFS and Fibromyalgia.

Collaborator membership varies, depending on the projects and funding. Currently, providers/researchers are working together to validate practice tools and care pathways to train doctors and other medical professionals and bring the latest treatments to South Australia.

The South Australian Clinic and Best Practice Centre aims to demonstrate cost effective best practice care for Australians living with these poorly understood complex chronic conditions.

Care pathways are based on 17 years of action research; surveys, focus groups, working groups, small university projects and service provision data.

Full article…

 
 
 

Hyperactive Parathyroid May Trouble Women With Fibromyalgia, Study Reports

International news

Sunday 1 May 2016

 

From Fibromyalgia News Today:

Parathyroid glands
 

Hyperactive Parathyroid May Trouble Women with Fibromyalgia, Study Reports

By Patricia Inacio, PhD
April 27, 2016

© Copyright 2015 - 2016 BioNews Services, LLC 
All rights reserved.

Women with fibromyalgia have a high incidence of hyperparathyroidism, a disease caused by an overactive parathyroid, according to a study titled “High frequency of asymptomatic hyperparathyroidism in patients with fibromyalgia: random association or misdiagnosis?” and published in the journal Revista Brasileira de Reumatologia.

Fibromyalgia and hyperparathyroidism share a range of symptoms, including fatigue, arthralgia, myalgia, sleep disturbances, depression, anxiety and memory impairment, which increase the chances for an improper diagnosis. Primary hyperparathyroidism is a disease caused by a hyperactive parathyroid, which are small endocrine glands located in the neck, next to the thyroid, and responsible for the secretion of a hormone, the parathyroid, that regulates calcium levels in the body.

Full article…

 
 
 

Progressive Brain Changes In Patients With Chronic Fatigue Syndrome: A Longitudinal MRI Study

Australian news

Saturday 30 April 2016

 

From the Journal of Magnetic Resonance Imaging (via Wiley Online Library):

Brain
 

Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study

Zack Y. Shan PhD
Richard Kwiatek MBBS
Richard Burnet MBBS
Peter Del Fante MBBS
Donald R. Staines MBBS
Sonya M. Marshall-Gradisnik PhD
Leighton R. Barnden PhD

First published: 28 April 2016
DOI: 10.1002/jmri.25283
Cited by: 0 articles
Funded by: Judith Jane Mason Foundation

Copyright © 1999 - 2016 John Wiley & Sons, Inc. All Rights Reserved

Abstract

Purpose

To examine progressive brain changes associated with chronic fatigue syndrome (CFS).

Materials and Methods

We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w). Each participant was characterized with Bell disability scores, and somatic and neurological symptom scores. We tested for differences in longitudinal changes between CFS and NC groups, inter group differences between pooled CFS and pooled NC populations, and correlations between MRI and symptom scores using voxel based morphometry. The analysis methodologies were first optimized using simulated atrophy.

Results

We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS while in NCs it was unchanged (family wise error adjusted cluster level P value, PFWE < 0.05). This longitudinal finding was consolidated by the group comparisons which detected significantly decreased regional WM volumes in adjacent regions (PFWE < 0.05) and decreased GM and blood volumes in contralateral regions (PFWE< 0.05). Moreover, the regional GM and WM volumes and T2w in those areas showed significant correlations with CFS symptom scores (PFWE < 0.05).

Conclusion

The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.

PDF Download PDF (519 KB)

Full article…

 
 
 

DiseaseMaps: Put Yourself On The Map!

International news

Friday 29 April 2016

 

DiseaseMaps
 

We have put ME/CFS Australia (SA) Inc. on this world map of disease prevalence and would love you to join us in this endeavour to help spread the word and assist the push for more research funding. Every head adds more weight!

Mark Camenzind (PhD, Research & Development Advocate to Cure ME and father of a son with ME) is leading an international drive to put a million ME/CFS people, organisations, doctors and friends on the map (10 days ago <1000 – now over 1800 people with ME/CFS listed).

He suggests that you get onto map (with pseudonym or just first name), near your home but not exactly, preferably with the option “able to contact”. For many around the world, this will help to organise regionally, so people can meet to share or advocate, coordinated with #MEAction for May 12th and May 25th, #MillionsMissing global campaign in various cities (Washington DC, San Francisco, Seattle, London, etc.). You can also encourage your doctors, family, friends and other ME organisations to add their names.

It’s very simple to do: Just find “Chronic Fatigue Syndrome/M.E.”, have a look at the current map, then click on “Join the map” button, top right. The rest is quick and easy. You can add as much or as little to your profile as you like, choose to have your age shown, whether to allow others to contact you, etc.

If you have Fibromyalgia then add this too.

www.DiseaseMaps.org

Full article…

 
 
 

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

South Australian news

Friday 29 April 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.

Full article…

 
 
 

Fibromyalgia Pain Levels Can Be Predicted By Leptin, Study

International news

Thursday 28 April 2016

 

From Bel Marra Health:

Leptin
 

Fibromyalgia pain levels can be predicted by leptin, study

By Devon Andre
Tuesday, April 26, 2016

Copyright © 2016 BelMarraHealth. All Rights Reserved.

Fibromyalgia pain levels can be predicted by leptin, according to research. Fibromyalgia is a condition with many diverse symptoms, the most common being widespread pain. Associated differing biological variables include elevated sedimentation rate (ESR), cytokine profile, and hormone levels. Diagnosing fibromyalgia is a challenge as there are no known biomarkers a patient can be tested for. For the study, researchers used the Vectra®DA, a multi-biomarker disease activity score, to measure serum biomarkers in patients with fibromyalgia and elevated inflammatory markers.

This cross-sectional study involved 33 patients from Los Angeles County. Patients displayed high results on the Vectra®DA, with mean score of 46.5 (range 30 to 84, or moderate to high activity). The serum concentrations of 12 biomarkers – with the exception of leptin – were found to be similar to those with rheumatoid arthritis. Forty-five percent of fibromyalgia patients had higher leptin levels.

The researchers found that the protein leptin plays an important pro-inflammatory and immunomodulatory role in the disease development in a clinical subgroup of fibromyalgia patients with elevated leptin levels. A better understanding of the leptin participation in the pathogenic processes of fibromyalgia may help diagnose the condition and offer better treatments.

Full article…

 
 
 

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