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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

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 2017
Saturday 8 April 2017
1:30pm
(Speaker to be confirmed)

Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek

Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings
Topic: The Invest in ME Conference held in London in June 2017

Saturday 18 November 2017
1:30pm
(Speaker to be confirmed)
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 Practioners - 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.

 

List Of Medical Marijuana Use May Expand In New Jersey

International news

Tuesday 28 February 2017

 

From US (New Jersey) news service SNJ Today:

 

SNJ Today
 

List of Medical Marijuana Use May Expand in New Jersey

By SNJ Today, Staff
February 24 2017
All content © Copyright 2000 - 2017 Frankly Media and snjtoday. All Rights Reserved.

South Jersey News, Weather, Sports, & Entertainment

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 28 February 2016

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

Consumer Expectations & Experiences of the Health Care System – An International Study

The CONVERSATIONS Project
January 30, 2017

Do you want your voice to be heard?

Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.

Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.

The survey can be found at https://www.surveymonkey.com/r/CONVERSATIONS-2016.

For more information go to www.conversations-project.info.

#MECFS #MECFSResearch

 
 
 

Plaudits For New South African TV News Documentary On ME/CFS

International news

Monday 27 February 2017

 

From the UK's ME Association:

 

Carte Blanche
 

Plaudits for new South African TV news documentary on M.E. | 24 February 2017

24 February 2017
© ME Association 2017

A 10-film on M.E. was shown on Carte Blanche, South Africa’s longest-running TV investigation show, on 20 February 2017. It has won plaudits round the world for its straight talking about this illness, and choice of interview subjects – particularly Dr Ron Davis and David Tuller.

Watch it here, and thank you to Nathalie Williams – who is featured in the film – for making sure it receives a world-wide audience.

 

 

Full article…

 
 
 

When It's An Effort To Just Get Out Of Bed

International news

Monday 27 February 2017

 

From Irish news service Independent.ie:

 

Catherine Keaney
Catherine Keaney from Manorhamilton
 

When it's an effort to just get out of bed

It's a debilitating condition for its many sufferers. Symptoms are varied with medical knowledge really only in its infancy about fibromyalgia, Paul Deering talks to Catherine Keaney on how she copes with the illness.

By Paul Deering
February 25 2017
© Independent.ie

It's usually worse in the mornings says Catherine, referring to a condition she has slowly got on top of after several years fighting it head on.

Morphine patches for pain, an inability to get out of the bed, fatigue, depression and general lack of interest are just some of the symptoms of fibromyalgia.

There's also what is termed the fibromyalgia fog as it called which can occur any time of the day but mainly first thing in the morning.

"I could wake up and if there was someone talking to me and asked me something it would take me a minute or two to digest what has been said and another minute to reply.

 

Full article…

 
 
 

Neural Consequences Of Post-Exertion Malaise In ME/CFS

International news

Sunday 26 February 2017

 

From ProHealth:

 

Exercise Bike
 

Neural Consequences of Post-Exertion Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

By Dane B. Cook et al.
www.ProHealth.com
February 25, 2017
© 2017 ProHealth, Inc. All rights reserved.

By Dane B. Cook et al.

Abstract

Post exertion malaise is one of the most debilitating aspects of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, yet the neurobiological consequences are largely unexplored. The objective of the study was to determine the neural consequences of acute exercise using functional brain imaging.

Fifteen female Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients and 15 healthy female controls completed 30 minutes of submaximal exercise (70% of peak heart rate) on a cycle ergometer. Symptom assessments (e.g. fatigue, pain, mood) and brain imaging data were collected one week prior to and 24 hours following exercise. Functional brain images were obtained during performance of: 1) a fatiguing cognitive task – the Paced Auditory Serial Addition Task, 2) a non-fatiguing cognitive task – simple number recognition, and 3) a non-fatiguing motor task – finger tapping. Symptom and exercise data were analyzed using independent samples t-tests.

Cognitive performance data were analyzed using mixed-model analysis of variance with repeated measures. Brain responses to fatiguing and non-fatiguing tasks were analyzed using linear mixed effects with cluster-wise (101-voxels) alpha of 0.05.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients reported large symptom changes compared to controls (effect size ?0.8, p<0.05). Patients and controls had similar physiological responses to exercise (p>0.05). However, patients exercised at significantly lower Watts and reported greater exertion and leg muscle pain (p<0.05).

For cognitive performance, a significant Group by Time interaction (p<0.05), demonstrated pre- to post-exercise improvements for controls and worsening for patients. Brain responses to finger tapping did not differ between groups at either time point. During number recognition, controls exhibited greater brain activity (p<0.05) in the posterior cingulate cortex, but only for the pre-exercise scan.

For the Paced Serial Auditory Addition Task, there was a significant Group by Time interaction (p<0.05) with patients exhibiting increased brain activity from pre- to post-exercise compared to controls bilaterally for inferior and superior parietal and cingulate cortices. Changes in brain activity were significantly related to symptoms for patients (p<0.05).

Acute exercise exacerbated symptoms, impaired cognitive performance and affected brain function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. These converging results, linking symptom exacerbation with brain function, provide objective evidence of the detrimental neurophysiological effects of post-exertion malaise.

Source: Dane B. Cook, Alan R. Light, Kathleen C. Light, Gordon Broderick, Morgan R. Shields, Ryan J. Dougherty, Jacob D. Meyer, Stephanie VanRiper, Aaron J. Stegner, Laura D. Ellingson, Suzanne D. Vernon. Neural Consequences of Post-Exertion Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Source: Brain, Behavior, and Immunity, Preprint, February 17, 2017

 

Full article…

 
 
 

Stanford Team Announces Update On ME/CFS Research

International news

Saturday 25 February 2017

 

From ME Action:

 

Hand
 

STANFORD TEAM ANNOUNCES UPDATE ON ME/CFS RESEARCH

By Adriane Tillman
February 22, 2017
Copyright © 2015 The Myalgic Encephalomyelitis Action Network, All Rights Reserved

A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding the metabolic cycles that are not working properly in people with ME/CFS that might be at the heart of the disease.

Ronald W. Davis, PhD, made the announcement via YouTube. Davis directs the CFS Research Center team at the Stanford Genome Technology Center (SGTC).

 

Full article…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 25 February 2017

 

From the University of South Australia (via email):

 

Gaming
 

Participants sought for pacing study

Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?

If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'

Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.

The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.

The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.

If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph. [08] 8302 1365). People who cannot tolerate more than 5 minutes of moving images (e.g. TV) should not apply.

We look forward to hearing from you.

Kind regards,

Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia

PDF Download this document

 
 
 

Four New Ailments Being Added To Connecticut Medical Marijuana Program

International news

Friday 24 February 2017

 

From US newspaper the Hartford Courant:

 

Connecticut Board of Physicians
The state Board of Physicians met Wednesday to discuss
proposed new conditions that would qualify
for medical marijuana in Connecticut.
 

Four New Ailments Being Added To Medical Marijuana Program

By Gregory B. Hladky
February 23, 2017
Copyright © 2017, Hartford Courant

Proposals to add fibromyalgia, muscular dystrophy, shingles and rheumatoid arthritis to the list of painful ailments that qualify for Connecticut’s medical marijuana program were endorsed by a state agency Thursday.

 

Full article…

 
 
 

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

South Australian news

Friday 24 February 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…

 
 
 

One Of The Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

International news

Thursday 23 February 2017

 

From ScienceAlert:

 

Woman
(Photo: Deana/Flickr)
 

One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

Chronic fatigue IS a real disease.

By Fiona MacDonald
22 February 2017

Chronic fatigue syndrome (CFS) or Myalgic Encephalomyelitis (ME) is one of the most perplexing conditions out there. It affects up to 1 million Americans and as much as 2.6 percent of the global population, often triggering exhaustion so severe that patients can't work or study.

But for decades, researchers have struggled to find an underlying cause, leading to an assumption by many doctors that it's 'not a real disease'. Now, Australian researchers have blown that myth wide open, showing for the first time that CFS is linked to a faulty cell receptor in immune cells.

"This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known - that it is a 'real' illness - not a psychological issue," said Leeanne Enoch, the Science Minister of Queensland - the Australian state that's supporting the research.

 

Full article…

 
 
 

Death Eater From Harry Potter Films Moves To Eastbourne

International news

Thursday 23 February 2017

 

From UK newspaper the Eastbourne Herald:

 

Jon Campling
Jon Campling
 

Death Eater from Harry Potter films moves to Eastbourne

22 February 2017
© 2017 Johnston Publishing Ltd. All rights reserved.

Watch out on the streets of Eastbourne, and particularly if you’re on a train – a Death Eater has come to town.

Jon Campling made a dramatic appearance in Harry Potter and the Deathly Hallows Part 1 when he stopped the Hogwarts Express with simply a menacing look and hand-raise.

At more than 6ft tall with distinctive features and long, straight hair, it is not hard to see why he was picked for the commanding role, and that of a main character in the major gaming franchise Final Fantasy.

Now he has moved to Eastbourne with his wife, Ali.

...

Last year the actor raised £800 for Invest in ME, a charity that aims to invest in Myalgic Encephalomyelitis (ME) research.

Campling, whose wife has the condition, said, “There hasn’t been enough research into it.

“She was a successful actress, but had to give it up.”

 

Full article…

 
 
 

Gold Coast Researchers Make Chronic Fatigue Syndrome Breakthrough

Australian news

Wednesday 22 February 2017

 

From Griffith University:

 

Dr Sonya Marshall-Gradisnik
Dr Sonya Marshall-Gradisnik
 

Gold Coast researchers make Chronic Fatigue Syndrome breakthrough

By Louise Durack
February 21, 2017

In a world first, Gold Coast researchers have made an important breakthrough in understanding the cause of Chronic Fatigue Syndrome.

Science Minister Leeanne Enoch said researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have found strong evidence that chronic fatigue syndrome was associated with a dysfunctional immune system.

“The research team, led by Professor Sonya Marshall-Gradisnik and Professor Don Staines, have identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Ms Enoch said.

“This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue.”

Full article…

 

From Channel 7 on Facebook:

 

 
 
 

Halstead Resident Bids To Start Support Group After Feeling 'Alone' During Battle With Fibromyalgia

International news

Tuesday 21 February 2017

 

From UK newspaper the Halstead Gazette:

 

Nichola Sparks
Nichola Sparks
 

Halstead resident bids to start support group after feeling 'alone' during battle with fibromyalgia

20 February 2017
©Copyright 2001-2017

A WOMAN with a condition that leaves her exhausted is hoping to kick-start a support group after feeling “alone” during her battle.

Nichola Sparks, of Gardeners Road, Halstead, was diagnosed with fibromyalgia two years ago after a lifetime of feeling muscle pain, fatigue and disturbed sleep.

Nichola wants to start a support group in the area and raise awareness for the condition.

 

Full article…

 
 
 

More In The News


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