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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

 

 

Neuromuscular Strain Increases Symptom Intensity In Chronic Fatigue Syndrome

International news

Sunday 31 July 2016

 

From PLOS ONE:

 

PLOS ONE
 

Neuromuscular Strain Increases Symptom Intensity in Chronic Fatigue Syndrome

Peter C. Rowe, Kevin R. Fontaine, Megan Lauver, Samantha E. Jasion, Colleen L. Marden, Malini Moni, Carol B. Thompson, Richard L. Violand
Published: July 18, 2016
http://dx.doi.org/10.1371/journal.pone.0159386

Abstract

Chronic fatigue syndrome (CFS) is a complex, multisystem disorder that can be disabling. CFS symptoms can be provoked by increased physical or cognitive activity, and by orthostatic stress.

In preliminary work, we noted that CFS symptoms also could be provoked by application of longitudinal neural and soft tissue strain to the limbs and spine of affected individuals.

In this study we measured the responses to a straight leg raise neuromuscular strain maneuver in individuals with CFS and healthy controls.

We randomly assigned 60 individuals with CFS and 20 healthy controls to either a 15 minute period of passive supine straight leg raise (true neuromuscular strain) or a sham straight leg raise.

The primary outcome measure was the symptom intensity difference between the scores during and 24 hours after the study maneuver compared to baseline.

Fatigue, body pain, lightheadedness, concentration difficulties, and headache scores were measured individually on a 0–10 scale, and summed to create a composite symptom score.

Compared to individuals with CFS in the sham strain group, those with CFS in the true strain group reported significantly increased body pain (P = 0.04) and concentration difficulties (P = 0.02) as well as increased composite symptom scores (all P = 0.03) during the maneuver.

After 24 hours, the symptom intensity differences were significantly greater for the CFS true strain group for the individual symptom of lightheadedness (P = 0.001) and for the composite symptom score (P = 0.005).

During and 24 hours after the exposure to the true strain maneuver, those with CFS had significantly higher individual and composite symptom intensity changes compared to the healthy controls.

We conclude that a longitudinal strain applied to the nerves and soft tissues of the lower limb is capable of increasing symptom intensity in individuals with CFS for up to 24 hours.

These findings support our preliminary observations that increased mechanical sensitivity may be a contributor to the provocation of symptoms in this disorder.

 

Full article…

 
 
 

Online Survey: Fibromyalgia – Coping And Functioning

South Australian news

Saturday 30 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 29 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…

 
 
 

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…

 
 
 

More In The News


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