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ME/CFS Australia Ltd
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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 322,
Modbury North,
South Australia 5092

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: 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

 

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

South Australian news

Sunday 19 November 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 19 November 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…

 
 
 

Society AGM Reminder

South Australian news

Saturday 18 November 2017

 

A reminder that the society's Annual General Meeting is today (Saturday 18 November 2017):

 

ME/CFS Australia (SA) Inc
 

Society Seminar

Saturday 18 November 2017
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speaker: Max Nelson

Topic: Results of the two-day bike test study.

 

Location

All seminars will be held at Sophia House.


View Larger Map

More details about each seminar will be available when they are finalised.

 

How to get there

SophiaSophia House is at 225 Cross Road, Cumberland Park, at the western end of Cabra Dominican College, (i.e. the seaside end, not the hills end). It's ten minutes from the city centre by car or bus. Turn west (towards the sea, not the hills) from Goodwood Road. The carpark entrance is off Cross Road at the small Sophia House sign on a brick gate post. There's a walk from the carpark to Sophia House of about 50 metres but you can also be dropped off at the door as some people are.

Buses from the city originate on King William Road (Bus G10, G20, G1) and travel via Goodwood Road (to Flinders University, Panorama and Happy Valley). Alight at stop 9 and walk west along Cross Road. This is about 450 metres, so may be an issue for most of our members.

The Circle Line (Route 100) Stop 176 is about the closest you can get which is about 50 metres from Sophia's gate. Buses also travel from the city (Bus W90. W91) along Winston Avenue. Alight at stop 12, the Cross Road intersection, and walk east to Sophia.

If you haven't been to Sophia House before, it is a particularly comfortable venue with chairs, a couple of sofas and a decent carpet if you are better lying on the floor. Bring whatever you need to be comfortable.

 

Reminders

Many people with ME/CFS are extremely chemically sensitive, so we ask attendees to refrain from wearing aftershaves, perfumes etc, and please refrain from smoking at our meetings. We will make every effort to clear the venue of fragrances and chemicals. There have been MCS issues there in the past and we have been in contact with Sofia's management to find ways to minimise or remove any potential issues for future meetings. We will continue to make every effort we can to minimise these problems at our meetings.

 

Please note that this program is subject to change.

Facebook

ME/CFS (Australia) SA Inc on Facebook

 

Details…

 
 
 

Massachusetts Researchers Make Major Discovery About IBS, Fibromyalgia

International news

Saturday 18 November 2017

 

From US news service WFTV 9 ABC:

 

Researcher
Researchers at Massachusetts General Hospital
said they made a groundbreaking discovery.
 

Massachusetts researchers make major discovery about IBS, fibromyalgia

By Fox25Boston.com
Updated: Nov 17, 2017
© 2017 Cox Media Group.

Researchers at Massachusetts General Hospital have made a groundbreaking discovery that could ease symptoms for millions of people suffering from conditions such as chronic fatigue, fibromyalgia and irritable bowel syndrome.

Dr. Anne Louise Oaklander said a good proportion of patients diagnosed with those health issues may actually have a disease called small fiber polyneuropathy, or SFPN.

This is a disorder in which nerve cells found under the skin are attacked by the body's immune system.

 

Full article…

 
 
 

From Theater To Science: A 'Medical Detective' Describes His Journey

International news

Friday 17 November 2017

 

From EIN News Desk:

 

Dr Ian Lipkin
Dr Ian Lipkin
 

From Theater to Science: A ​'​Medical Detective​'​ Describes His Journey

November 16, 2017
© 1995-2017 IPD Group, Inc., a publisher of EIN News

WASHINGTON, D.C., USA, November 16, 2017 /EINPresswire.com/ -- How does a man who wanted to be in the theater, end up as maybe the nation’s preeminent virus hunter, or, as he says, “medical detective.”

Dr. W. Ian Lipkin, who heads the 60-person-strong Center for Infection and Immunity, a biological research laboratory, at Columbia University, tells the story of how the theater lost him to science in a revealing interview with Llewellyn King, host of “White House Chronicle,” airing on select PBS and other stations, and SiriusXM Radio this weekend.

...

In the United States, Lipkin is fighting to understand one of the most awful and debilitating lifelong diseases: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, for which Lipkin says he uses the acronym ME/CFS.

This disease, according to Lipkin, is little understood by doctors and is hard to diagnose “as there are no biological markers.”

“It was rare pleasure to interview Dr. Lipkin. It was one of the best interviews I have ​had the honor of conducting in my own long career,” King said.

 

Full article…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Friday 17 November 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)

 
 
 

Discovery Forum 2017: An Interview With Dr Ian Lipkin

International news

Thursday 16 November 2017

 

From the Solve ME/CFS Initiative (via YouTube):

 

Dr Ian Lipkin
Dr Ian Lipkin
 

Discovery Forum 2017: An Interview with Dr. Ian Lipkin

SolveCFS
Published on 15 Nov 2017

Solve ME/CFS Initiative’s 2nd Annual Discovery Forum, held on October 14th in Washington DC, brings together leaders from across industry, academia, federal agencies, and biotech companies to tackle the most pressing issues confronting ME/CFS today.

In this exclusive interview, Dr. Zaher Nahle discusses ME/CFS science and policy with Dr. Ian Lipkin, Director of the Center for Infection & Immunity at Columbia University and the director of the new NIH-funded Center for Solutions for ME/CFS.

 

Full article…

 
 
 

350km Walk By Father With ME

International news

Thursday 16 November 2017

 

From Irish newspaper the Evening Echo:

 

Conor Cahill
MARATHON TREK:
Conor Cahill walked 22 miles every day
on the Camino Santiago pilgrimage in Spain.
 

350km walk by father with M.E

By Chris Dunne
Reporter at HuffPost UK
14/11/2017
© Evening Echo 2017

FATHER-of-five Conor Cahill is a man who always puts his best foot forward, even though he suffers from two debilitating illnesses — myalgic encephalomyelitis, known as M.E, and fibromyalgia.

“I was diagnosed four years ago,” says Conor, 47, of Cloyne. “I was dealing with a lot of issues at the time. The origins of M.E can be viral, environmental, hormonal, genetic, neurological and immunological, or a combination of one or more. Stress may have triggered my M.E.”

However, he ignored the aches and fatigue, the burning joints and weakness and wooziness, when he walked more than 350 km of the Camino de Santiago pilgrimage in the summer.

He was a man on a mission, as he did it to mark the 30th anniversary of Deaf Enterprises.

Conor joined Deaf Enterprises two years ago and is manager of a local social enterprise which has been providing training and employment to Cork’s deaf community for 28 years.

 

Full article…

 
 
 

It's Well Past Time For 'Unrest', A Game-Changing New Doco About ME/CFS

International news

Wednesday 15 November 2017

 

From Junkee:

 

Jennifer Brea
Jennifer Brea
 

It’s Well Past Time For ‘Unrest’, A Game-Changing New Doco About ME/CFS

By Naomi Chainey
14 November 2017
© 2017 Junkee

When Jen Brea, a PhD student at Harvard, came down with a mysterious and debilitating chronic illness, she took to filming her struggles on her phone as a tool to communicate with her doctors.

The symptoms of ME/CFS (also called myalgic encephalomyelitis or chronic fatigue syndrome) are both physical and cognitive. I can tell you from experience, it’s like having the flu with a hangover while someone turns gravity up to 100. There is no effective treatment. Symptoms worsen with activity, but are largely invisible and can be inconsistent, making them difficult to detect in a quick appointment with a GP.

The footage of Jen struggling to crawl across the floor, labouring to form simple words and howling in pain while collapsing from her wheelchair eventually became the foundation for Unrest, a powerful documentary on the collective trauma of a long-ignored patient community.

 

Full article…

 
 
 

ME Could Be Diagnosed And Treated Faster Thanks To Technique That Helped Girl Too Exhausted To Speak

International news

Wednesday 15 November 2017

 

From The Huffington Post UK:

 

Olivia McDonald (right)
Olivia McDonald (right)
 

ME Could Be Diagnosed And Treated Faster Thanks To Technique That Helped Girl Too Exhausted To Speak

'My body was aching all over.'

By Rachel Moss
Reporter at HuffPost UK
14/11/2017
© 2017 Oath Inc. All rights reserved.

Olivia McDonald missed two years of school when she first began experiencing symptoms of Myalgic Encephalopathy (ME) at the age of 12.

The condition, also known as Chronic Fatigue Syndrome (CFS), left her too exhausted to lift a spoon to eat breakfast, walk to the bathroom for a shower or chat with friends.

Olivia was forced to wait months and see multiple doctors before she could receive a diagnosis and access the treatment she needed, but support could be about to improve for ME sufferers.

There is currently no universally accepted method of diagnosing ME, with diagnosis being completed via the process of elimination of other conditions, making progress slow.

But now, new research suggests a quick technique can provide an accurate diagnosis of ME by simply assessing patients for five physical symptoms.

 

Full article…

 
 
 

Chronic Fatigue Syndrome: One Woman's Debilitating Experience with ME

International news

Wednesday 15 November 2017

 

From International Business Times:

 

Wheelchair
In many severe cases, sufferers move
with the aid of a wheelchair.
(Photo: Getty)
 

Chronic fatigue syndrome: One woman's debilitating experience with ME

Sufferers can have constant headaches, muscle aches, insomnia and memory loss, among other symptoms

By Ruchira Sharma
November 14, 2017
© Copyright 2017 IBTimes Co., Ltd. All Rights Reserved.

The illness myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome, is bewildering for a number of reasons. For one, there are thought to be around 250,000 sufferers in the UK, most of whom are women. Women account for four times the number of male sufferers.

While ME follows other auto-immune illnesses in that more women are diagnosed with it than men, very little research has been done to show why.

In addition to this, since the illness was first identified in the 1950s, doctors have been unable to properly understand the root cause of it. In fact, early cases were deemed "hysteria" or "yuppie flu" – a problematic start for a much misunderstood illness.

Hannah Price, 23, has had ME since she was 11 years old. She tells IBTimes UK: "Invisible illnesses are hard for people to comprehend, because from the outside I look fine, so I've had to deal with a lot of Ignorance and 'it's all in your head' – but this is changing and makes a huge difference to my outlook."

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 15 November 2017

 

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

 

PDF

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

 
 
 

Chronic Fatigue Syndrome Is NOT All In The Mind - But Caused By Changes In Brain Chemistry, A Study Finds

International news

Tuesday 14 November 2017

 

From the Daily Mail Australia:

 

Woman
Chronic fatigue syndrome and Gulf War Illness are caused
by changes in brain chemistry and are not psychological
disorders as it was previously thought, a study
from Georgetown University found.
(© Shutterstock/wavebreakmedia)
 

Chronic fatigue syndrome is NOT all in the mind- but caused by changes in brain chemistry, a study finds

  • Chronic fatigue syndrome and Gulf War Illness are caused by changes in brain chemistry and are not  psychological disorders
  • Both disorders cause pain, physical and mental fatigue, cognitive dysfunction and flu-like symptoms
  • Controversy has raged for nearly 30 years on whether the disorders were genuine illnesses
  • Now researchers from Georgetown University have found changing levels in molecules in sufferers' brains

By Kayla Brantley for MailOnline
11 November 2017
© Associated Newspapers Ltd

Chronic fatigue syndrome is not a psychological disorder as previously thought, researchers claim after finding evidence that the condition is caused by changes in brain chemistry.

Controversy has raged for nearly 30 years on whether the debilitating condition that causes pain, physical and mental fatigue and cognitive dysfunction was a genuine illness as critics speculated that it was all in the mind.

Now researchers have found changing levels in a brain molecule called miRNA in patients, which is responsible for turning protein production on and off, subsequently causing the tiring symptoms.

The findings lay the groundwork to better treat and understand the disorder that affects nearly three million Americans.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 14 November 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

 
 
 

Brett's Bid To Raise Awareness Of Fibromyalgia

International news

Monday 13 November 2017

 

From UK newspaper the Bury Free Press:

 

Brett Robertson
Brett Robertson has started a Fibromyalgia Support Group
and wants to raise awareness.
(PICTURE: Mecha Morton)
 

Brett’s bid to raise awareness of fibromyalgia

Saturday 11 November 2017
© 2017 Iliffe Media Publishing Ltd. All rights reserved.

One man’s campaign to raise awareness of a debilitating condition has reached social media and could hit the cinema screen.

Brett Robertson, of Bury St Edmunds, has suffered with fibromyalgia, a condition which causes pain, fatigue and muscle stiffness, for four years and is registered disabled as a result.

During one of his flare-ups he was researching support for people with the condition while resting in bed, when he realised he needed to take matters into his own hands.

“I was laid there and thought there was no advice of where to go to get help, so I thought I would set up my own support group on Facebook. Within a week we had 25 members and within a month or so we have 53.

“We are all sharing things that have worked for us. If people know they are not on their own, it makes them feel better.”

 

Full article…

 
 
 

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

South Australian news

Monday 13 November 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…

 
 
 

More In The News


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