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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
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 the 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, 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
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

 

 

Model Annalise Braakensiek Reveals How She Overcame Her Chronic Fatigue Through Alternative 'Biophysical Holistic Therapy'

Australian news

Thursday 28 July 2016

 

From Daily Mail Australia:

 

Daily Mail Australia
 

'I've been blown away by the results': Model Annalise Braakensiek reveals how she overcame her chronic fatigue through alternative 'biophysical holistic therapy'

By Sophie Haslett for Daily Mail Australia
27 July 2016

  • Annalise Braakensiek wrote about overcoming chronic fatigue
  • The 43-year-old model credits Bicom therapy – an alternative method
    [based on Bioresonance therapy, a pseudoscientific medical practice in which it is proposed that electromagnetic waves can be used to diagnose and treat human illness]
  • Ms Braakensiek says it helped her to identify all sorts of ills in her body
  • She is intending to train as a practitioner and says she is much happier
  • The Australian model recently opened up about her depression

 

Full article…

 
 
 

#ME Action Policy Change: ME, Not ME/CFS

International news

Thursday 28 July 2016

 

From #ME Action:

 

#ME Action
 

#MEACTION POLICY CHANGE: ME, NOT ME/CFS

By #ME Action
July 24, 2016

The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt [the names] ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate among populations that may be unfamiliar with the name ME. While we may still use the name CFS for that narrow purpose, we will no longer be using ME/CFS.

 

Full article…

 
 
 

ME/Chronic Fatigue Syndrome Clinic And Research Fund

South Australian news

Wednesday 27 July 2016

 

From South Australia's Bridges and Pathways Institute Inc. (via email):

 

ME/Chronic Fatigue Syndrome Clinic and Research Fund
 

ME/Chronic Fatigue Syndrome Clinic and Research Fund

Bridges & Pathways Institute Inc.
Charitable License Number CCP 1022

Bridges and Pathways Institute Inc. is a solution-focused Australian charity working to reduce disadvantage and improve the lives of all Australians living with non-priority / poorly understood conditions including:

  • ME/CFS Chronic Fatigue Syndrome
  • Fibromyalgia, Chronic Pain Syndrome

by establishing a much needed multidisciplinary best practice care clinic to improve research opportunities, daily care and access to services.

Donations

Donations through the national GiveNow website at:

givenow.com.au/bridgesandpathwaysclinicfund

Or a bank transfer to:

Bridges & Pathways ME/CFS Fund
Account Name: Bridges & Pathways
BSB Number: 805‐050
Account No.: 2359845
Description: ME/CFS Clinic/Research

*Please send a copy of the receipt via email to bpprojects02@gmail.com so we can send you a tax receipt. Your donations will be used to:

  • Fund research on new tests and treatment
  • Set up and maintain a multidisciplinary clinic
  • Facilitate training and resources for doctors and practice nurses
  • Improve access to multidisciplinary health services
  • Evaluate care planning and management coordination for patient welfare.

Bridges & Pathways Institute Inc.
PO Box 793,
Blackwood, SA, 5051
Email: bpprojects02@gmail.com
Web: bridgesandpathways.org.au
Phone: 0447 133 682
Copyright © 2016

Bridges and Pathways
PDF Download Pamphlet (301 KB)

 
 
 

Volunteers Wanted For UniSA Research

South Australian news

Tuesday 26 July 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.

Appointments are available 7 days a week, at any time between 8am and 6pm.

The 2-day testing protocol is very strenuous, and the current study aims to determine if the need for 2 physically taxing exercise tests can be reduced through the use of heart rate monitoring. We understand that the testing will be physically taxing, so we have beds available to recover on following the maximal testing sessions.

This research has the potential to both generate further evidence of a diminished capacity for physical exertion in ME/CFS sufferers and to provide an additional biomarker that can be used to illustrate the presence of ME/CFS. All participants will be provided with a detailed report on their performance and the presence of post-exertional malaise which can be given to their specialists.

The researchers are also looking for matched healthy control participants to take part in the study. Healthy controls need to be healthy and injury free, and of a similar age/body mass index/gender as the CFS/ME participants.

The ME/CFS patients will get a detailed report on their post-exertional malaise, and for the healthy participants they get information on their VO2 max and overall fitness. Usually a consult of this type costs $150 at our clinic, so they get that part for free!

For further information, please see the information sheets below, or contact:

Mr Daniel Clark (Daniel.Clark@unisa.edu.au, ph 8302 1365); or
Mr Max Nelson (Max.Nelson@unisa.edu.au, ph 8302 1502).

Download:

DOC ME 2-day test Info sheet (DOCX, 26 KB)
PDF ME 2-day test Info sheet (PDF, 442 KB)

DOC ME-CFS Advertising Material (DOCX, 18 KB)
PDF ME-CFS Advertising Material (PDF, 219 KB)

 
 
 

Living With Chronic Fatigue Syndrome: Woman Struggles With The 'Invisible Disease'

International news

Monday 25 July 2016

 

From US news station 12 KLSA News:

 

12 KLSA News
 

Living with chronic fatigue syndrome: Woman struggles with the 'invisible disease'

By Rob Masson
Saturday, July 16, 2016

A profile of US ME/CFS sufferer Mary Gelpi.

KSLA News 12 Shreveport, Louisiana News Weather & Sports

 

Full article…

 
 
 

The Fatigue And Pain Hormone? Leptin Shows Up Again – In Fibromyalgia

International news

Sunday 24 July 2016

 

From Health Rising:

 

Health Rising
 

The Fatigue and Pain Hormone? Leptin Shows Up Again – in Fibromyalgia

By Cort Johnson
July 22, 2016

Nobody in the chronic fatigue syndrome (ME/CFS) community had taken leptin – a hormone produced by fat cells – seriously until Jarred Younger’s Stanford Good Day Bad Day study suggested that it might be the factor driving fatigue in ME/CFS. Younger wasn’t aiming at leptin; it was just one of many immune factors he analyzed in his unusual (and intense) study examining the blood of ME/CFS patients over 25 days. Now leptin is popping out again – this time in women with body-wide pain and fibromyalgia.

Association of Leptin with Body Pain in Women.Younger J, Kapphahn K, Brennan K, Sullivan SD, Stefanick ML.J Women’s Health (Larchmt). 2016 Jul;25(7):752-60. doi: 10.1089/jwh.2015.5509. Epub 2016 Mar 30.

This may be the first paper in the history of medicine to report on both a three-person study and a 5000-person-plus study at the same time. The proof-of-concept three-person study mimicked the ME/CFS study; every day for 25 days three dedicated FM patients provided blood samples and estimates of their symptoms to Younger who then analyzed about 50 factors in their blood. As in the bigger (but not much bigger) ME/CFS study leptin popped out again – but this time with regard to pain, not fatigue.

The 5676 person study queried the women regarding their pain levels and measured their BMI (obesity index) and leptin levels.

Both studies found that increased leptin levels were associated with increased pain. Increased (BMI) obesity was correlated with increased leptin levels as well. Putting the BMI factor aside, leptin was still associated with increased pain; i.e., leptin may be associated with increased obesity levels, but it also appears to increase pain whether you are fat or thin.

If leptin is increasing inflammation in diseases like rheumatoid arthritis, lupus, and multiple sclerosis and ME/CFS and FM it could do it in a couple of ways; by increasing cytokine levels (IL-6, IL-8), by activating the macrophages or by poking the microglia.

 

Full article…

 
 
 

Coming Soon… Foggy Frog And The Pain Gang Picture Book

South Australian news

Saturday 23 July 2016

 

All people deserve to have their story heard, and those of us with invisible illnesses (some of which aren't even recognised fully in the medical community) deserve to have ours heard too!

One of our members, Megan Schartner, has written and illustrated Foggy Frog and the Pain Gang, a children's book which tells the first part of that story without leaving people out because their illness isn't recognised or they don't have a name for it.

Foggy Frog and the Pain Gang will be available September 2016. Pre-order your copy here to receive 20% off RRP. The book will be launched at Burnside Library on September 24th at 1:30pm.

Facebook page: https://www.facebook.com/FoggyFrogBook/

This is part of a larger campaign to provide a resource for educators everywhere to raise awareness of invisible illnesses in any community and with any age group. See here for more details: http://liveken.com/foggy-frog-campaign/.

From Megan:

 

Foggy Frog
 

Introducing Foggy Frog and Friends

Let me tell you about these creatures that have come to visit me. These are the ones that are causing all the problems and won’t go away.

We’ll start with their leader, Foggy Frog.

Foggy Frog is the one that’s always on my shoulder. He’s weighing me down and makes it feel like I’m pushing through mud whenever I’m trying to do anything. Somehow, he’s also managed to get into my head and muddle everything up. Because of this I have trouble remembering things and can’t focus on anything for more than a few minutes at a time without zoning out.

His constant companions are the Gnawing Gnats.

These guys have completely taken over my body. They are constantly running around nibbling here and there, causing my whole body to ache. Occasionally they bite harder causing my muscle to twitch and shake.

Although Foggy Frog and his Gnawing Gnats have become permanent residents in my body, they are not the ones that cause me the most pain. That award goes to their friends who come to visit quite regularly; almost daily in fact…

 

Read more…

 
 
 

Online Survey: Fibromyalgia – Coping And Functioning

South Australian news

Saturday 23 July 2016

 

From The University of Adelaide's Heather Trainor:

 

The University of Adelaide
 

Fibromyalgia: Coping and Functioning study

Dear Participant,

You are invited to participate in the research project described below.

What is the project about?

The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.

Who is undertaking the project?

This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.

Who is invited to participate?

Participation in this study is open to people who:

  • Have received a diagnosis of Fibromyalgia from a medical practitioner
  • Are Australian residents
  • Are over the age of 18
  • Are proficient in English (no translation services available)

 

Read more…

 
 
 

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

South Australian news

Friday 22 July 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…

 
 
 

More In The News


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