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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.

 

Writing, Living, Laughing: How One Woman Lives Her Best Life With Fibromyalgia In Ghana

International news

Friday 23 June 2017

 

From Ghana news outlet YEN.com.gh:

 

Writing, Living, Laughing

 

Writing, Living, Laughing: How one woman lives her best life with Fibromyalgia Syndrome in Ghana

Author: M. Quarshie
Thursday June 22, 2017
All Rights Reserved. © 2015-2017 YEN.com.gh Ghana News

Editor's Note: YEN.com.gh features a young woman in Ghana living with Fibromyalgia Syndrome, a incurable disorder that is widely unknown especially in Ghana. She agreed to be featured under the condition of anonymity. Her story seeks to bring awareness to the disorder and what it's like living with it.

What is this madness that makes me // carry myself into the future, // leaving happiness behind, // torturing myself this way?

K.

A writer, poet and literary enthusiast. Life on the outside looks pretty normal. She is on her way to earning her PhD, and is among the leading new faces in Ghana’s writing scene.

“I am a writer, I am a literary enthusiast, I blog. I am serious about building a writing career and I’m also an academic. I also love food, which I want to develop and do something with,” is how she introduces herself.

K. is a young woman living with a condition called Fibromyalgia Syndrome. This chronic condition is still widely unknown, especially in Ghana. With the ongoing research about it, there are still differing schools of thought on whether it is an autoimmune disorder or a neurological one.

 

Full article…

 
 
 

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

South Australian news

Friday 23 June 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…

 
 
 

Student Spotlight: NMB Student Diagnosed With Fibromyalgia Defies Tough Odds

International news

Thursday 22 June 2017

 

From WMBF News in the US:

 

Madelyn Babson
A North Myrtle Beach High student has not let
Fibromyalgia stop her from meeting her goals.
(Source: WMBF News)
 

Student Spotlight: NMB Student diagnosed with Fibromyalgia defies tough odds

By Christel Bell, Anchor
Wednesday, May 17th 2017
Copyright 2017 WMBF News. All rights reserved.

NORTH MYRTLE BEACH, SC (WMBF) - A graduating senior at North Myrtle Beach High School is ready to receive her diploma after beating the odds.

Little River teen Madelyn Babson lives by these words: "Even when you don't have the answers you want, there is always a way to push through and keep going."

There were days Babson said her body was in so much pain, she could hardly get out of bed.

"It's mostly throughout my entire body, pain throughout all your muscles and tendons," Babson said. "It's really hard to handle sometimes."

It all began in middle school. Babson went through tests, many doctors' visits and physically therapy before she was sent to the Medical University of South Carolina in Charleston to find her diagnosis. In seventh grade, she was diagnosed with Fibromyalgia.

Now a senior at North Myrtle Beach High School, she said she has learned how to manage her pain and her schoolwork.

WMBFNews.com, Myrtle Beach/Florence SC, Weather

 

Full article…

 
 
 

Society Seminar

South Australian news

Wednesday 21 June 2017

 

ME/CFS Society (SA) IncA reminder that the society's next seminar will be held this Saturday (24 June 2017):

 

Society Seminar

Saturday 24 June 2016
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speaker: Dr Richard Kwiatek

Topic: Brain structural changes in ME/CFS – recent research findings.

 

Details…

 
 
 

David Tuller's Campaign – Update

International news

Wednesday 21 June 2017

 

From David Tuller (via Crowdrise):

 

David Tuller
David Tuller
 

Virology Blog's Trial By Error: Reporting on PACE, ME/CFS and Related Issues

June 20, 2017

The last ten days of my campaign...

The response from the community to my campaign has been incredible--beyond what I imagined when I launched it a few weeks ago. I’ve been enormously touched and heartened by the donations and comments. I certainly didn’t think I would have to consider what I’d do if I over-shot my goal of $60,000. But yesterday the donations passed $55,000, and that has triggered Erica Verillo’s amazingly generous $5000 matching contribution. I’ve now secured my half-time position for the next 12 months, with 10 days more to go in this campaign. So I need to explain why I hope people continue to donate.

PACE-busting is a big, big job! Basically, more donations will allow me to do more. Over the last year or so, I’ve been asked by many people in many countries—Australia as well as across Europe, in addition to the U.K.—to visit and expose the harms caused by their own domestic PACE/CBT/GET ideological brigades. Since February of 2016, I’ve gone to the UK four times and once to the Netherlands, for research and interviews as well as talks in Amsterdam, Belfast and London. I have travelled as cheaply as possible, crashing with friends and sometimes staying in hostels--I haven’t noticed many others of my advanced age in these dormitory rooms! But the costs have still added up.

In the next 12 months, I hope to go to Australia, because the situation there is awful, and take at least two more times to the U.K. and hopefully to one or more of the other European countries suffering under this terrible burden. In addition to conducting research and interviews, I will seek to arrange talks to both patient groups and professional/academic audiences; these talks, I have seen, are an important means of spreading awareness of what’s gone on. I will budget up to $10,000 for travel—about half for Australia, and the other half for Europe. Any additional funds will be used to extend my Berkeley appointment proportionally beyond next June 30th--for a month, two months, or whatever.

 

Full article…

 

 
 
 

Norwegian National Advisory Unit On CFS/ME

International news

Wednesday 21 June 2017

 

From the European Journal of Pediatric Neurology:

 

Flag of Norway
 

Norwegian National Advisory Unit on CFS/ME

I.B. Helland, E.B. Strand
Department of Clinical Neurosciences for Children, Oslo University Hospital, Rikshospitalet, Norway
DOI: http://dx.doi.org/10.1016/j.ejpn.2017.04.1072
June 2017 Volume 21, Supplement 1, Page e202
© Elsevier Inc.

Objective
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a chronic, complex, multi-faceted condition characterized by extreme fatigue and other symptoms that are not improved by rest. The etiology and pathogenesis remain unknown; there are no laboratory diagnostic tests; and so far there are no known cures. The condition results in severe impairment in daily functioning. CFS/ME is poorly accepted and poorly understood, and the diagnosis is controversial. Knowledge about the condition is scarce, and many patients have experienced misbelief.

Methods
Making the diagnosis is essential for providing appropriate care. The Ministry of Health and Care Services decided to establish a National Advisory Unit on CFS/ME in 2011, and the Advisory Unit was established at Oslo University Hospital (OUS) in 2012. It is based in the Division of Paediatric and Adolescent Medicine. The National Advisory Unit has representatives from the multidisciplinary medical clinic for adults with suspected CFS/ME and from the multidisciplinary team at the Department of Clinical Neurosciences for Children, OUS.

Results
The National Advisory Unit has the following responsibilities within its field: i) To build and disseminate competence; ii) To monitor and communicate treatment outcomes; iii) To participate in research and the establishment of research networks; iv) To contribute to relevant teaching; v) To ensure the provision of guidance and the dissemination of knowledge and competence to the health services, other service providers and clients; vi) To implement measures to ensure equal access to national services; vii) To contribute to the implementation of national guidelines and evidence-based practice. The National Advisory Unit on CFS/ME has aided The Ministry of Health and Care Services in making National Guidelines for diagnoses and management of CFS/ME.

Conclusion:
By establishing a National Advisory Unit on CFS/ME, the diagnosis CFS/ME has been established and knowledge about the disease has increased.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 21 June 2017

 

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

 

PDF

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

 
 
 

Dangerous Unproven Treatments For 'Chronic Lyme Disease' Are On The Rise

International news

Tuesday 20 June 2017

 

From The Washington Post:

 

Medical equipment
Some patients misdiagnosed with chronic Lyme disease are
prescribed treatments that do not work. The misdiagnosis
can cause delays in treating the actual underlying condition.
(iStockphoto)
 

Dangerous unproven treatments for ‘chronic Lyme disease’ are on the rise

By Lena H. Sun
June 15, 2017

An increasing number of Americans with medically ambiguous symptoms are being misdiagnosed with “chronic Lyme disease” and prescribed dangerous and often expensive treatments that do not work, according to a new report.

In some instances, patients have died after receiving intensive, long-term and inappropriate courses of intravenous antibiotics that led to septic shock. In other cases, misdiagnosis caused dangerous delays in treatment of a patient’s actual underlying condition.

These incorrect diagnoses have existed for years. But public health officials and clinicians say they are alarmed because of the increasing severity and scope of some treatments in recent years, said Christina Nelson, a medical epidemiologist and author of a report released Thursday by the Centers for Disease Control and Prevention.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 20 June 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

 
 
 

One Of Our Strongest Allies Needs Our Help! Please Read!

International news

Monday 19 June 2017

 

From ProHealth:

 

We Can Help
 

One of Our Strongest Allies Needs Our Help! Please read!

By David Tuller
May 30, 2017
www.ProHealth.com
© 2017 ProHealth, Inc. All rights reserved.

URGENT UPDATE, JUNE 17: As of today, David Tuller's Crowdrise campaign stands at $49,000. This outpouring of support has been impressive! But with less than two weeks to go, we are down to the wire if we are going to make the $60,000 goal. (If the campaign falls short, David will lose his health insurance.)

Erica Verrillo, ProHealth's ME/CFS editor, author of Chronic Fatigue Syndrome: A Treatment Guide, and founder of the American ME and CFS Society, a new national patient non-profit, is stepping forward at this critical time. She will TRIPLE any donations made during these final days up to a total of $5,000. How does it work? If you donate $25, for example, she will kick in $75. The triple matching campaign will end when a total of $10,000 is reached. It's that simple.

Please DONATE! David has done so much for us, it's time to show our appreciation!

DONATE HERE and your donation will triple!

Editor's Note: David Tuller has been an invaluable advocate for the ME/CFS community. His articles debunking the PACE trial, and consequently the use of CBT and GET as effective treatments for ME/CFS, have achieved international recognition. Now, he needs our help. After nine years, his Berkeley position is ending. The University of California is in poor financial shape, and grant money is scarce this year, so prospects are poor. Please donate to assist one of our strongest allies. Any amount will help!

The money raised will be sent to the Center for Scientific Integrity, a non-profit which publishes the terrific site Retraction Watch and has agreed to serve as fiscal sponsor for this campaign. The Center will transfer 100% of the net funds to the School of Public Health at UC Berkeley, which will create a position focused on investigating the PACE trial and others issues related to ME/CFS.

You can donate HERE.

 

Full article…

 
 
 

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

South Australian news

Monday 19 June 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…

 
 
 

Stereotyping Still Prevents ME From Being Taken Seriously

International news

Sunday 18 June 2017

 

From The Scotsman:

 

Davie Provan
A generation of Scots learned about ME
through the fate of former Celtic player Davie Provan.
 

Kevan Christie: Stereotyping still prevents ME from being taken seriously

By Kevan Christie
Thursday 11 May 2017
© 2017 Johnston Publishing Ltd. All rights reserved.

The media coverage for the Millions Missing protest to raise awareness of ME in Scotland is to be welcomed and will hopefully lead to a much-needed conversation around this often misunderstood condition.

...

A generation of working-class Scots first became aware of ME when Celtic and Scotland footballer Davie Provan was struck down with the condition also known as Chronic Fatigue Syndrome (CFS) and had to pack the game in at the tender age of 29.

Here was a footballer who thrived in the macho atmosphere of Old Firm games and scored a free-kick in the 1985 Scottish Cup Final - only to be struck down in his prime by a ‘mystery’ illness that involved sleeping a lot. He didn’t fit the emerging stereotype but was widely ridiculed anyway.

 

Full article…

 
 
 

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

South Australian news

Sunday 18 June 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 18 June 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 17 June 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 17 June 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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