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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 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: 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

 

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.

 

Unrest Documentary Coming To Australia

Australian news

Wednesday 26 July 2017

 

From #MEAction (via email):

 

Unrest
 

See Unrest at Melbourne International Film Festival

Copyright © 2017 #MEAction, All rights reserved.

Dear friends,

Unrest, Jennifer Brea's award-winning documentary about ME, is coming to the Melbourne International Film Festival, August 5 & 7.

Find tickets for the feature film
Find tickets for the VR project

Bring your family, your neighbors, your doctors and policymakers - let's start to change the story!

Saturday, August 5 at 1:45 PM
ACMI, Studio 1
Flinders Street, Melbourne

Monday, August 7 at 6:30PM
ACMI Cinema 2
Federation Square, Melbourne

 
 
 

Danielle Lloyd's Mum Jackie In Tears On UK TV Show As She Opens Up About Fibromyalgia

International news

Wednesday 26 July 2017

 

From OK!:

 

Danielle and Jackie Lloyd
Danielle Lloyd joined her mum Jackie on Lorraine's
sofa to raise awareness of Fibromyalgia [ITV]
 

Danielle Lloyd’s mum Jackie breaks down in tears on Lorraine as she opens up about life-changing invisible illness

[UK Fibromyalgia sufferer] JACKIE Lloyd had to be supported by pregnant daughter [and UK celebrity] Danielle Lloyd as she was left in tears after revealing her debilitating illness on [ITV chat show] Lorraine.

By Niomi Harris
Tuesday, July 25, 2017
Copyright ©2017 Northern & Shell Plc.

The duo appeared on Lorraine’s sofa to raise awareness of Fibromyalgia, otherwise known as the ‘invisible illness’.

Jackie opened up about the living with the life-changing illness which affects one in 25 people, after being diagnosed two tears ago.

The grandmother spoke of how she’s in “constant pain” which has gradually gotten worse over the course of six years.

Danielle, who is due to give birth in five weeks time, also spoke about how hard it is having her mum struck down with the illness.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 26 July 2017

 

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

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 311KB)

 
 
 

I Didn't Want A Child Until I Got A Chronic Illness – Now I Might Never Be Able To Have One

International news

Tuesday 25 July 2017

 

From The Washington Post:

 

Child and parent
(iStock)
 

I didn’t want a child until I got a chronic illness. Now I might never be able to have one.

By Jamison Hill
July 7, 2017
© 2017 The Washington Post

The idea of being a parent has always felt like some far-off part of my life’s plan — something I would eventually get to after some maturing and the shedding of my bachelorhood. As I became an adult, I figured it would always be an option. I certainly never thought that I would have the choice taken from me.

Six years ago, I was diagnosed with myalgic encephalomyelitis, or chronic fatigue syndrome, a multi-system disease that severely inhibits metabolic features in the body. The disease eventually left me unable to speak or eat solid food for more than a year.

At some point, between the onset of my illness and when I became severely sick and bedridden, I realized I wanted to have a child. Almost simultaneously, I realized I couldn’t.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 25 July 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

 
 
 

Invisible: Interview With Filmmaker Nick Demos

International news

Monday 24 July 2017

 

From ProHealth:

 

Invisible
 

Invisible: Interview with Filmmaker Nick Demos

By Melissa Swanson
www.ProHealth.com
July 22, 2017
© 2017 ProHealth, Inc. All rights reserved.

Melissa Swanson has joined the campaign to help bring the independent film Invisible to the big screen. As part of her commitment, Melissa interviewed filmmaker Nick Demos and shares that interview with us here.

From the Invisible website:

Desperate to help his mother fight her symptoms, filmmaker Nick Demos meets a young athlete, a human rights advocate, and a struggling migrant - all in different stages of the often-debilitating pain syndrome, Fibromyalgia.

Invisible tells the often ignored stories of people suffering from a syndrome that many still believe doesn’t exist. The film also exposes the fight with insurance and drug companies for proper treatment and how access to holistic health and education is determined by class and money. Through his journey to understand Fibromyalgia better as a way of helping his mother better, filmmaker Nick Demos finally addresses his own suspicions about having the syndrome himself.

What was your inspiration for making this film?

The film’s original inspiration came from Megan Densmore, one of our subjects in the film. She has had Fibromyalgia since she was a teen and had the idea to create the film. She is a close friend to our lead producer, Pallavi, who loved the idea and then approached me. What Pallavi didn’t know is that my mother suffers with Fibromyalgia. I was immediately interested in directing the project.

 

Full article…

 
 
 

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

South Australian news

Monday 24 July 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 23 July 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 23 July 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…

 
 
 

Entertainment Book

South Australian news

Saturday 22 July 2017

 

ME/CFS Australia (SA) Inc

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!

Kind regards,

Management Committee

 

Read more…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 22 July 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)

 
 
 

Fibromyalgia Patients Exhibit Changes In Cerebral Blood Flow, Study Says

International news

Friday 21 July 2017

 

From Fibromyalgia News Today:

 

Brain blood flow
 

Fibromyalgia Patients Exhibit Changes in Cerebral Blood Flow, Study Says

By Joana Fernandes, PhD
July 17, 2017
Copyright © 2013-2017 All rights reserved.

Fibromyalgia patients may have different cerebral blood flow parameters compared with the general population, according to a recent study. Researchers say these changes could be linked to clinical pain parameters and emotional factors.

The study titled, “Altered cerebral blood flow velocity features in fibromyalgia patients in resting-state conditions,” was published in the journal PLoS One.

 

Full article…

 
 
 

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

South Australian news

Friday 21 July 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…

 
 
 

Another Potential Fibromyalgia Drug Bites The Dust

International news

Thursday 20 July 2017

 

From the National Pain Report:

 

American drugs
 

Another Potential Fibromyalgia Drug Bites the Dust

By Donna Gregory Burch
July 18, 2017
Copyright 2016 National Pain Report

The fibromyalgia community suffered yet another disappointment earlier this month when drugmaker Daiichi Sankyo announced mirogabalin, a potential new treatment, failed to meet its pain-reducing goals in clinical trials.

Last year, I reported that three potential new fibromyalgia drugs were heading to clinical trials. Two of those contenders – mirogabalin and TNX-102, a sublingual form of cyclobenzaprine, have now been shown to be ineffective for fibromyalgia. The third drug – an antiviral/anti-inflammatory combo named IMC-1 – will likely head to trial later this year.

Mirogabalin is a cousin of Lyrica, the first drug ever approved to treat fibromyalgia, but it was supposed to work better than Lyrica with fewer side effects. Unfortunately, mirogabalin didn’t live up to those claims.

 

Full article…

 
 
 

Patients Find Freedom From Fibromyalgia Pain With Cannabis

International news

Thursday 20 July 2017

 

From Marijuana:

 

Marijuana
 

Patients Find Freedom From Fibromyalgia Pain With Cannabis

By Bonni Goldstein, M.D.
July 18, 2017
Copyright © 2017 Marijuana.com

When I first met Vicki, I connected with her right away. Comfortable in her own skin, I knew that if it weren’t for our professional relationship, we might have been friends. She was struggling when I met her, taking several medications and strapped financially as she had no decent health insurance to cover her pre-existing conditions after being laid off. Despite her serious medical conditions, she was very positive with a great attitude.

...

Vicki began reading about cannabis as a natural option to treat her pain and came to my office to learn more. She has found that THC-rich medicine taken in small doses (one to two puffs) smoked in a joint two or three times a day eases her pain and insomnia. It also alleviates the anxiety that is so often associated with these medical conditions. Vicki states that she’s a responsible user and knows what affects her mind and body. She does not drive after she smokes and, while she reports sometimes feeling euphoria, she most often feels relaxed and is able to sleep.

Vicki’s former life of pain prohibited her from really participating in activities with her friends and family. Before cannabis, if she didn’t sleep or had too much pain, she would often stay at home to “ride it out,” and then feel too exhausted to leave. Her friends and family were frustrated with her, insisting that she didn’t take care of herself. “This is what fibromyalgia does. This is how chronic fatigue affects me,” she’d insist. “I have to stay home and take care of myself.” Today, if she feels pain or discomfort, she has a very effective and non-toxic way to treat it. With medical cannabis, she can actively participate in her life.

 

Full article…

 
 
 

More In The News


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