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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

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.

Unrest Adelaide Premiere
Society Seminars for 2017
Saturday 8 April 2017
1:30pm
Speaker: David Mitchell
Topic: What do genes, hormones and supplement insufficiencies have to do with ME/CFS?

Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek
Topic: Brain structural changes in ME/CFS – recent research findings

Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017

Saturday 18 November 2017
Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
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)

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
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
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
VIC/TAS/NT
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

 

Society Seminar Report: The Invest In ME Conference (London June 2017) By Dr Ros Vallings

South Australian news

Thursday 19 October 2017

 

From Society member Bronwyn Caldwell:

 

Invest in ME
 

The Invest In ME Conference (London June 2017) By Dr Ros Vallings

By Bronwyn Caldwell

Download a PDF of this report

Via Skype from NZ, Dr. Ros Vallings talked us through the research, treatments & management practices discussed at the Invest in ME conference held in London in June this year.

As our first attempt at having a speaker live from overseas, we did very well. Ros very kindly spent quite a bit of time practicing with me before the event. This now opens up the possibility of having more international experts speak to us live without needing to be in the room which is really exciting.

Key Take-outs of Ros’s Talk:

  • The first two days of the conference were a colloquium. A brainstorming type event with roughly 60 international researchers and physicians, including Ros, invited to attend. The third day was the conference itself where all the presentations were given.
  • The important areas of current research include: immunology, biochemistry, brain activity & inflammation, gut/microbiome, metabolome, exercise studies, mitochondria, cardiovascular etc. etc., treatment studies.
  • The disease is like a molecular jigsaw puzzle we are trying to put together and although we have gaps we now have so much more knowledge than even 5 years ago. Researchers of ME/CFS, unlike other conditions, are all very keen to collaborate and share information which is quite wonderful.
  • There are several potential biomarkers/tests being investigated at the moment. The 2-day VO2 max test (a.k.a. 2-day bike test) is proving a very reliable way to diagnose ME/CFS.
  • A summary of the conference presentions Ros discussed is in the table below

 

Read more…

 
 
 

UK Man Diagnosed With Chronic Fatigue Syndrome Battling To Keep Radio Station Going

International news

Thursday 19 October 2017

 

From UK news outlet Somerset Live:

 

Steve Mellor
Steve Mellor, left, with the mascot costume
donated to the radio station and a friend
 

Man diagnosed with chronic fatigue syndrome battling to keep Weston-super-Mare radio station going

By
18 October 2017
© Local World

A man who was recently diagnosed with a life-limiting illness is battling to keep his local radio station open for as long as possible.

Steve Mellor, who has ME (Myalgic Encephalomyelitis), otherwise known as chronic fatigue syndrome, set up Tinks Radio as a way to take his mind off the severely limiting condition.

He's had the condition for around seven years now.

 

Full article…

 
 
 

Chronic Fatigue Syndrome: A Disease Hidden In Plain Sight

International news

Wednesday 18 October 2017

 

From the White House Chronicle on Vimeo:

 

White House Chronicle
 

Chronic Fatigue Syndrome: a disease hidden in plain sight | White House Chronicle 9041

Uploaded by White House Chronicle
Monday, October 16, 2017
TM + © 2017 Vimeo, Inc. All rights reserved.

Latest research on Chronic Fatigue Syndrome: a disease hidden in plain sight.

Guests:
Dr. Walter Koroshetz, Director, National Institute of Neurological Disorders;
Dr. Zaher Nahle, Chief Scientific Officer and Vice President for Research, Solve ME/CFS Initiative

whchronicle.com

White House Chronicle, Show #9041
Air Date: October 13, 2017
Run Time: 29:00
Host: Llewellyn King


Chronic Fatigue Syndrome: a disease hidden in plain sight | White House Chronicle 9041 from White House Chronicle on Vimeo.

 

Full article…

 
 
 

Carrie Ann Inaba's Chronic Fatigue Kills Her Sex Life

International news

Wednesday 18 October 2017

 

From Page Six:

 

Carrie Ann Inaba
Carrie Ann Inaba
 

Carrie Ann Inaba’s chronic fatigue kills her sex life

By Jessica Sager
October 17, 2017
© 2017 NYP HOLDINGS, INC. ALL RIGHTS RESERVED

Carrie Ann Inaba revealed that her struggle with chronic fatigue syndrome extends to the bedroom.

Inaba, 49, confessed to her “dry spells” on “The Talk” while the panel discussed singer Pink’s recent admission that she and husband Carey Hart have gone a year without sex.

“I struggle with some health stuff. I have chronic fatigue [syndrome], and when it comes in, that’s just the furthest thing [from what] you ever want,” the “Dancing with the Stars” judge said. “Like, ‘Leave me alone, let’s talk, let’s read a book together, let’s talk about intimate things, let’s find other ways to bond.'”

 

Full article…

 
 
 

The Painful Truth About Living With Fibromyalgia

International news

Wednesday 18 October 2017

 

From the Irish Examiner:

 

Eileen Howard and Lady Gaga
Eileen Howard says she has huge respect for
Lady Gaga, who had to cancel part of her tour
because of her fibromyalgia.
 

The painful truth about living with fibromyalgia

Mother-of-five Eileen Howard has been battling fibromyalgia for years. At least Lady Gaga’s openness about the painful condition has put it in the public eye, writes Olivia Kelleher.

By Olivia Kelleher
Wednesday, October 11, 2017
© Irish Examiner Ltd. All rights reserved.

A wedding invitation on the doormat is not always a welcome sight. Sometimes a guest is socially anxious or conscious of cost.

But when you have fibromyalgia your concern is very specific. Will you make it through the long and arduous day?

Mother-of-five Eileen Howard has lost count of the number of family occasions that have been marred by her condition.

She recalls an anniversary party for a friend where she got all dressed up for the festivities but had to abandon her plans at the last minute because of illness.

 

Full article…

 
 
 

Fibromyalgia Patients Have Decreased Brain Connectivity In Some Regions, Study Reports

International news

Wednesday 18 October 2017

 

From Fibromyalgia News Today:

 

Brain
 

Fibromyalgia Patients Have Decreased Brain Connectivity in Some Regions, Study Reports

By Stacy Grieve, PhD
October 16, 2017
Copyright © 2013-2017 All rights reserved.

Using specialized magnetic resonance imaging technology, a study from Taiwan found that patients with fibromyalgia have decreased brain connectivity in specific regions, including the insula and the default mode network.

The insula is part of the cerebral cortex and has been proposed to act as a switching core that relays sensory information. The default mode network (DMN) is a network of interacting brain regions that is normally active when a person is in a “restful” state and not focused on a particular task.

Patients with fibromyalgia are hypersensitive to pain, and studies have shown increased pain responses in the pain network in the brain, including the insula and DMN regions.

Technical limitations have prevented the study of in-depth changes in brain connectivity.

The study, “Altered insula–default mode network connectivity in fibromyalgia: a resting-state magneto encephalographic study,” was recently published in the Journal of Headache and Pain.

 

Full article…

 
 
 

Caiti Baker Reveals The Health Battle Which Stalled Her Career Ahead Of Dally M Awards Gig With Briggs

International news

Wednesday 18 October 2017

 

From news.com.au:

 

Caiti Baker
Caiti Baker
 

Caiti Baker reveals the health battle which stalled her career ahead of Dally M Awards gig with Briggs

AFTER battling chronic fatigue for years, rising hip-pop star Caiti Baker is enjoying the best year of her career and will star with rapper Briggs at the Dally M Awards.

By Kathy McCabe
News Corp Australia Network
September 26, 2017
News Limited Copyright © 2017.

HIP-POP sensation Caiti Baker could barely get out of bed for five years as she battled the ravages of chronic fatigue syndrome.

Ill-health stalled her promising musical career, but it has now kicked into top gear as the singer prepares to join acclaimed rapper Briggs on stage at the Dally M Awards on Wednesday [27 September].

The pair joined forces earlier this year on "Here", an anthem which soundtracks the Fox League channel and celebrates the contribution of indigenous players to the sport.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 18 October 2017

 

ME/CFS Society (SA) IncThe Society’s Constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 154KB)

 
 
 

Her Illnesses Kept Her Bed-Ridden For Years – Now It's Her Mission To Raise Awareness

International news

Tuesday 17 October 2017

 

From US newspaper the Centre Daily Times:

 

Emily Steffensmeier with her mother Renee
Emily Steffensmeier laughs with her mom, Renee, as they
use blue icing to top cupcakes on Oct. 7 in their State
College home. Steffensmeier has Dysautonomia and
chronic fatigue syndrome and is organizing a walk
to raise awareness and money for research.
(Photo: Abby Drey adrey@centredaily.com)
 

Her illnesses kept her bed-ridden for years. Now it’s her mission to raise awareness.

By Megan Fleming
For the CDT
October 13, 2017
© Copyright 2017

Emily Steffensmeier, of State College, has spent the majority of her adult life battling unrelenting fatigue, unrefreshing sleep, major brain fog and difficulty focusing, malaise and muscle aches. Those are just a few of her symptoms.

Steffensmeier, 42, is among some 70 million people worldwide living with various forms of chronic fatigue syndrome or Dysautonomia, a malfunctioning autonomic nervous system.

For 15 years, she said, she spent many of her waking hours bed-ridden and homebound. But in 2004, after having met with more than 100 doctors to try to find help, Steffensmeier consulted with Dr. Peter Rowe, director of Johns Hopkins Children’s Center’s chronic fatigue in Baltimore.

She said that with medication, he has helped her lead a fuller life, despite her illnesses.

 

Full article…

 
 
 

Burlesque Performance Set To Raise Money For Chronic Condition

International news

Tuesday 17 October 2017

 

From UK newspaper the Andover Advertiser:

 

Lady May J
Lady May J: Burlesque performance set to
raise money for chronic condition
 

Burlesque performance by Lady May J set to raise money for Andover Fibromyalgia & M.E Community Group

By Anahita Hossein-Pour
15th October 2017
©Copyright 2001-2017.

A BURLESQUE performer and a lingerie designer have teamed up to raise money for Andover Fibromyalgia and ME Community Group next week.

The show BOO! Burlesque will feature a performance from Andover’s Lady May J wearing a special “poppy” suspender belt which was especially designed for women suffering from the condition fibromyalgia by British lingerie brand Ella Vine.

The saucy fundraiser being held on Friday, 20 October is out to raise the profile of the painful, and not well understood condition of fibromyalgia which one in 20 people live with, including international pop diva Lady Gaga.

Designer Ella, who also has ME and fibromyalgia, said: “I’m proud to be able to support this fantastic case and very grateful to Lady May J for kindly holding the flag for all of us sufferers.”

 

Full article…

 
 
 

Grey And White Matter Differences In Chronic Fatigue Syndrome

International news

Tuesday 17 October 2017

 

From ProHealth:

 

Brain scans
 

Grey and white matter differences in Chronic Fatigue Syndrome - A voxel-based morphometry study

By A. Finkelmeyer et al.
www.ProHealth.com
October 16, 2017
© 2017 ProHealth, Inc. All rights reserved.

By Finkelmeyer et al.

Abstract

OBJECTIVE: Investigate global and regional grey and white matter volumes in patients with Chronic Fatigue Syndrome (CFS) using magnetic resonance imaging (MRI) and recent voxel-based morphometry (VBM) methods.

METHODS: Forty-two patients with CFS and thirty healthy volunteers were scanned on a 3-Tesla MRI scanner. Anatomical MRI scans were segmented, normalized and submitted to a VBM analysis using randomisation methods. Group differences were identified in overall segment volumes and voxel-wise in spatially normalized grey matter (GM) and white matter (WM) segments.

RESULTS: Accounting for total intracranial volume, patients had larger GM volume and lower WM volume. The voxel-wise analysis showed increased GM volume in several structures including the amygdala and insula in the patient group. Reductions in WM volume in the patient group were seen primarily in the midbrain, pons and right temporal lobe.

CONCLUSION: Elevated GM volume in CFS is seen in areas related to processing of interoceptive signals and stress. Reduced WM volume in the patient group partially supports earlier findings of WM abnormalities in regions of the midbrain and brainstem.

Source: Finkelmeyer A, He J, Maclachlan L, Watson S, Gallagher P, Newton JL, Blamire AM. Grey and white matter differences in Chronic Fatigue Syndrome - A voxel-based morphometry study. Neuroimage Clin. 2017 Sep 28;17:24-30. doi: 10.1016/j.nicl.2017.09.024. eCollection 2018.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 17 October 2017

 

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

 
 
 

FDA Approves Extended-Release Lyrica

International news

Monday 16 October 2017

 

From Pain News Network:

 

Lyrica
 

FDA Approves Extended-Release Lyrica

By Pat Anson, Editor
October 14, 2017
Copyright © 2017 Pain News Network

The U.S. Food and Drug Administration has approved a new extended-release version of Lyrica for the treatment of neuropathic pain. Lyrica CR is designed to be taken once a day, instead of the two or three doses recommended for Lyrica’s original formulation.

“Lyrica CR was developed to offer patients an effective treatment option with the convenience of once-daily dosing,” said James Rusnak, MD, Chief Development Officer in Pfizer’s Global Product Development. “It provides an important option for patients and health care providers managing these often debilitating pain conditions.”

 

Full article…

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 16 October 2017

 

ME/CFS Australia (SA) Inc
 

ME/CFS Australia (SA) has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.

By Deborah Marlin, Committee Member
Originally published on 30 March 2017

No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.

In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”

There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia

South Australian news

Sunday 15 October 2017

 

From PhD candidate Gipsy Hosking (via email):

 

University of South Australia
 

Research participants wanted to develop a creative resource about living with ME/CFS and Fibromyalgia

31 May 2017

Researcher: Gipsy Hosking, PhD Candidate, University of South Australia

I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.

If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.

This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.

Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.

For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.

If you are interested in taking part or have any questions please contact me at Gipsy.Hosking@myuni.unisa.edu.au or 0408 266 075 or you can message me via the Facebook page www.facebook.com/GHresearch/.

***********************************

DOCX Call for participants plain text.docx (135 KB)

PDF Call for participants flyer.pdf (137 KB)

PDF Participant Info Sheet.pdf (155 KB)

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 15 October 2017

 

From Change.org:

 

WRC
 

STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA

By Stephany Del Canto
1 June 2017

© 2017, Change.org, Inc.
Certified B Corporation

AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE

Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.

...

In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.

Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.

This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.

 

Full article…

 
 
 

My Story: 'Constant Pain Does Not Deter Me'

International news

Saturday 14 October 2017

 

From Kenyan newspaper the Daily Nation:

 

Benedettah Wangui
In April 2006, Benedettah Wangui was diagnosed with
bronchasthma, an inflammatory disease of the
respiratory tract.
(PHOTO|COURTESY)
 

MY STORY: ‘Constant pain does not deter me’

By Simon Mburu
Friday October 13, 2017
© Copyright 2017

Throughout her life, Benedettah Wangui Mwangi has been living with constant body pain. This is because she suffers from fibromyalgia, a health condition without cure. It causes pain all over the body, brings fatigue, and causes problems with the function of the arms, mobility, breathing, swallowing, balance, memory, sleep and mood.

This condition started to manifest during her childhood in Kinangop, Nyandarua County.

“Wounds would take very long to heal. A little bruise would get septic and spread into a big wound that would take months to heal,” says the single mother of one. If it wasn’t the struggle to heal wounds, Benedettah would be down with hay fever or tonsillitis. Hospital jabs were part of her life.

 

Full article…

 
 
 

UK Man Endures Body Wax To Raise Awareness Of Fibromyalgia

International news

Saturday 14 October 2017

 

From UK newspaper the Wharfedale Observer:

 

Michael Wilkinson
Michael Wilkinson receiving his full body wax
 

Otley man endures body wax to raise awareness of fibromyalgia

By Jim Jack
13th October 2017
©Copyright 2001-2017.

AN OTLEY man has undergone a full body wax for charity.

Michael Wilkinson had his chest, back and legs waxed at the Unity beauty salon in town to raise awareness and funds for Fibromyalgia Action UK.

His partner, Rachel Crowcroft, was diagnosed with the condition – sufferers experience chronic widespread pain and a heightened pain response to pressure – a year ago.

 

Full article…

 
 
 

Inflection Point: How To Be Taken Seriously When You Have a Mystery Illness - Jennifer Brea, Unrest

International news

Saturday 14 October 2017

 

From US radio station KALW's Inflection Point:

 

Jennifer Brea
Filmmaker Jennifer Brea
(Photo courtesy of Jennifer Brea / Modified from original)
 

Inflection Point: How To Be Taken Seriously When You Have a Mystery Illness - Jennifer Brea, Unrest

By 
October 11, 2017
© 2017 KALW

Jennifer Brea was an avid traveler, a Harvard PhD student and a Princeton grad. She was engaged to be married to the man she loved. Then one day she couldn't get out of bed with an illness that went undiagnosed for years. 

Until finally she started to meet other people--mostly women--who had the same problem: a misunderstood illness, generically described as "chronic fatigue syndrome" or what used to be called "hysteria." To take control of her life--and to be taken seriously, she started to film herself, others like her and the few experts there are. Her film is called "Unrest."

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 14 October 2017

 

Entertainment Book

Dear Friends,

Here is an opportunity to support our community with minimal cost to health.

Please share widely and let family and friends know that they can purchase their Entertainment Books from us.

For many of us who are unable to dine out, there are many other savings available such as discounts from selected supermarkets and other retailers.

The books and/or vouchers come in handy as gifts for others too!

With thanks to Wallis-Smith Financial Planning for their support: http://wallissmith.com.au/20172018-entertainment-books/.

Kind regards,

Management Committee

 

Read more…

 
 
 

'A Slow Death': What It's Like Living With Chronic Fatigue Syndrome

Australian news

Friday 13 October 2017

 

From ABC's Triple J Hack:

 

Jennifer Brea and Omar Wasow
Jennifer Brea and Omar Wasow
 

'A slow death': what it’s like living with Chronic Fatigue Syndrome

By Shalailah Medhora
Friday 13 October 2017
© 2017 ABC

Andrew Bretherton was 26 when he caught glandular fever. Even after he shook off the disease, his body hasn’t yet fully recovered.

“I can’t even get out of bed to go to the toilet or brush my teeth or have a shower. Just doing basic, everyday tasks is like a marathon,” Andrew told Hack.

“I felt I would constantly be tired or my legs were in constant pain and I had a lot of digestive problems as well. Doctors couldn’t really pinpoint what was causing it.”

 

Full article…

 
 
 

Living With Chronic Fatigue

Australian news

Friday 13 October 2017

 

From ABC's Triple J Hack:

 

Woman
 

Living with chronic fatigue, and Spilt Milk pulls out of pill-testing

Thursday 12 October 2017
© 2017 ABC

Why chronic fatigue syndrome is so hard for doctors to nail down. Plus, Spilt Milk announces its pulling out of the Australia-first pill testing trial.

Presenter - Stephen Stockwell

Download MP3 (13.76 MB)

 

Full article…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Friday 13 October 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 five 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 (PDF, 83 KB)

 
 
 

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