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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 2018
Saturday 24 March 2018
1:30pm
Speaker:
Carol Hunter of Rose Park Psychology.
Topic: Coping strategies for patients, carers and families living with ME/CFS.

Saturday 30 June 2018
1:30pm
Speaker: to be announced
Topic: to be announced

Saturday 11 August 2018
1:30pm
Speaker: to be announced
Topic: to be announced

Saturday 24 November 2018
Annual General Meeting
1:30pm
Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI
Topic: Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
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

 

Experts Gather In Montreal To Develop International Research Agenda On ME/CFS

International news

Thursday 26 April 2018

 

From Cision PRNewswire:

 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference
 

Experts Gather in Montreal to Develop International Research Agenda on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Source: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference
25 April 2018
Copyright © 2018 PR Newswire Association LLC. All Rights Reserved. A Cision company.

MONTREAL April 25, 2018 /PRNewswire/ - International experts will participate in the first-ever Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference on May 3–5, 2018 at CHU Sainte-Justine. The conference will bring together 250 researchers and healthcare professionals from various disciplines to develop an international research agenda for this debilitating disease, for which there is no known cause or effective treatment.

"I am extremely encouraged by the interest shown by leading researchers and clinicians, who recognize the importance of establishing research priorities that will advance our understanding of ME/CFS and identify new strategies for treating patients," says Dr. Alain Moreau, Head, Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases, CHU Sainte-Justine Research Center and Scientific Chair of the Conference.

The conference will focus on:

  • Methods to properly diagnose patients with ME/CFS;
  • The role of biomarkers in diagnosing ME/CFS;
  • Benefits of establishing a biobank to advance research;
  • Ways to improve clinical care for ME/CFS patients; and
  • How to initiate, support, sustain and advance research on ME/CFS.

 

Full article…

 
 
 

Rock Stars Rally To Raise Funds For UK's First Fibromyalgia Centre In Deeside

International news

Wednesday 25 April 2018

 

From Welsh newspaper the Daily Post:

 

David and Jackie Williams
Organiser David Williams and his wife Jackie,
who suffers from the debilitating condition.
(Image: Rock off Fibro)
 

Rock stars rally to raise funds for UK's first Fibromyalgia centre in Deeside

With the support of rock stars and politicians, David Williams aims to pave the way for better treatment for the debilitating condition.

By Zara Whelan
Thursday 19 April 2018
© 2018 Trinity Mirror Merseyside

A husband from Flintshire has enlisted the help of top rock stars to raise money to open a drop in centre for Fibromyalgia sufferers.

David Williams’s wife Jackie was just 43 when she was diagnosed with the incurable illness which causes constant pain all over the body.

After leaving his job to care for his now bed-bound wife, Mr Williams has been determined to raise funds and awareness.

Through music and art he's managed to gather support from Peter Hook (New Order), Dave Sharp (The Alarm) and Kirk Brandon (Spear of Destiny) along the way.

The second Rock Off Fibro concert comes to the Tivoli Venue this weekend [21-22 April] - a popular music event born from personal tragedy.

 

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 25 April 2018

 

ME/CFS Society (SA) IncThe society's constitution has been updated:

 

PDF

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

 
 
 

People's Pharmacy: Low-Dose Lithium Conquered Chronic Fatigue

International news

Tuesday 24 April 2018

 

From US newspaper the Athens Banner-Herald:

 

Joe and Teresa Graedon
Joe and Teresa Graedon
 

People’s Pharmacy: Low-dose lithium conquered chronic fatigue

By Joe and Teresa Graedon
Monday April 23, 2018
© Copyright 2006-2018 GateHouse Media, LLC. All rights reserved.

I read about low-dose lithium a few months ago. The article said that it might help prevent dementia and improve memory.

So, being old, with the usual forgetting where I put things and all that, I started taking 5 mg a day, a very low dose. To my amazement, after just a few days I found myself free of the chronic fatigue that had plagued me for more than a year after I had shingles. I haven’t seen this kind of result mentioned in any of the articles I found. I thought I was going to have to live the rest of my life at 25 percent energy, so it feels like lithium saved my life — or 75 percent of it, anyway.

Your story is intriguing. There is a new theory about chronic fatigue syndrome (Clinical & Experimental Immunology, February 2017). Immune cells may become impaired after infection, childbirth or trauma. Calcium channels that normally increase in number drop instead.

While it is not clear how lithium might affect fatigue, basic research shows that it does change how some brain cells handle calcium (Bipolar Disorders, November 2016). Researchers believe this may help explain how lithium works for people with bipolar disorder, but it also might tie in to your experience.

The article you read about dementia might have been a study showing that in Denmark, people are less likely to develop dementia if their drinking water contains more lithium (JAMA Psychiatry, Oct. 1, 2017). We hope that further research will clarify this connection.

Make sure your doctor knows you are taking low-dose lithium. You should ask to have your kidney and thyroid function monitored periodically, since at high doses lithium can harm these organs.

 

Full article…

 
 
 

Former Irish Squash Champ Rooney Still Haunted By Being Forced To Quit

International news

Tuesday 24 April 2018

 

From Irish newspaper the Connacht Tribune:

 

John Rooney
Former Irish squad champion John Rooney
at Galway Lawn Tennis Club.
 

Former Irish squash champ Rooney still haunted by being forced to quit

By Stephen Glennon
March 30, 2018
© Copyright 2018 - Connacht Tribune Group. All Rights Reserved.

Talking Sport with Stephen Glennon

There was a time when former professional squash player John Rooney looked destined to rule the courts for even longer than he did. However, over a decade ago, he was diagnosed with Chronic Fatigue Syndrome (CFS) and, just like that, the future he had envisaged was stolen from him.

Even now, Rooney, who returned with his family from the United States to Galway just a fortnight ago to take up the Racquets Manager position at Galway Lawn Tennis Club, finds it all hard to accept. Despite having achieved so much in his career, he struggles to look beyond that time when his professional career came to an unceremonious end.

 

Full article…

 
 
 

Chloe Silcock, 23, Of Fordingbridge, Diagnosed With Fibromyalgia, Aiming To Become Miss Hampshire

International news

Monday 23 April 2018

 

From UK newspaper the Southern Daily Echo:

 

Chloe Silcock
Miss Hampshire contestant Chloe Silcock.
 

Chloe Silcock, 23, of Fordingbridge, diagnosed with fibromyalgia, aiming to become Miss Hampshire

21st April 2018
© Copyright 2001-2018.

A YOUNG Hampshire woman battling a long-term health problem is hoping to be crowned Miss Hampshire tomorrow.

Six years ago Chloe Silcock, 23, of Fordingbridge, was diagnosed with fibromyalgia, which causes pain throughout her entire body.

She aims to raise awareness of the condition by taking part in the regional section of the Miss England competition.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 23 April 2018

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

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

The CONVERSATIONS Project
Originally published 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

 
 
 

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

South Australian news

Monday 23 April 2018

 

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…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 22 April 2018

 

From Jake Bailey on Change.org:

 

Centrelink is broken
 

Fix the issues with accessing the Disability Support Pension

Jake Bailey started this petition to Minister for Veterans' Affairs Hon. Dan Tehan MP and 3 others
1 March 2018
Copyright © 2018 BBC

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 22 April 2018

 

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 21 April 2018

 

Order your new Enteraintment Membership!

Dear Friends,

Not sure what you can do to support your ME/CFS community?

Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.

Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.

Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.

Where to buy:

- At our next Seminar
- Online at https://www.entertainmentbook.com.au/orderbooks/167c042
- For hard copy books (as opposed to digital copies), pay a bit extra for delivery or collect from Parkside – Ph: 1300 128 339 – or email pdelfante@sacfs.asn.au to make arrangements.

 

"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L

 

Entertainment Book

 
 
 

UK Rabbi Reveals Chronic Fatigue Battle

International news

Saturday 21 April 2018

 

From UK news outlet The JC:

 

Rabbi Laura Janner-Klausner
Rabbi Laura Janner-Klausner
 

Rabbi reveals chronic fatigue battle

'People that don’t understand the condition assume that people with it are lazy or unreliable'

By Rosa Doherty
April 20, 2018
© The JC 2018

Laura Janner-Klausner is often so tired that she falls asleep at work and carries a pillow, ear plugs and eye mask wherever she goes.

Reform Judaism’s senior rabbi is not lazy — she has revealed she is one of 250,000 people in the UK who suffers from chronic fatigue syndrome (CFS).

She spoke publicly this week for the first time about her life with the debilitating illness which causes fever, aching, prolonged tiredness and depression in the hope it will break the stigma attached to the condition.

 

Full article…

 
 
 

Living With Chronic Fatigue Syndrome: Interview With Author Joanna Charnas

International news

Saturday 21 April 2018

 

From US news outlet Blasting News:

 

Joanna Charnas
Joanna Charnas
 

Living with Chronic Fatigue Syndrome: Interview with author Joanna Charnas

Author Joanna Charnas talks about her experiences with Chronic Fatigue Syndrome and writing a book on the subject.

By Meagan Meehan (author) and Jane Flowers (video editor)
April 20, 2018
© Blasting News 2018

Author Joanna Charnas recently wrote a self-help book about living with chronic illness. In the #Book, she draws on her experiences with #Chronic Fatigue Syndrome (CFIDS), an illness that she contracted at age 19. It left her in a debilitated state for 17 years, finally resulting in a diagnosis. Joanna, a former HuffPost blog contributor, now works at a Navy medical center in San Diego. Her second book, “100 Tips and Tools for Managing Chronic Illness,” is full of personal anecdotes about her condition written with insight, heart, and humor. The book was made available on Amazon and the Barnes & Noble website as of April 20, 2018.

Joanna Charnas holds a B.A. and an M.S.W. A native of New York City, she has been a social worker for 30 years and currently specializes in group therapy. Joanna recently granted an exclusive interview where she discussed her illness, writing a book, and more.

 

Full article…

 
 
 

Biomarkers In Saliva Of Fibromyalgia Patients May Be Diagnostic Tool

International news

Saturday 21 April 2018

 

From Fibromyalgia News Today:

 

Medical test
David Tuller
 

Biomarkers in Saliva of Fibromyalgia Patients May Be Diagnostic Tool

By Patricia Inacio, PhD
April 19, 2018

Researchers have found that increased levels of three proteins in the saliva, namely alpha-enolase, phosphoglycerate mutase 1 and serotransferrin, may help differentiate fibromyalgia (FM) patients from those with other inflammatory diseases.

The study with that finding, “Putative salivary biomarkers useful to differentiate patients with fibromyalgia,” was published in the Journal of Proteomics.

Researchers investigated whether saliva from FM patients has potential diagnostic and/or prognostic biomarkers that could improve how patients are managed and treated.

 

Full article…

 
 
 

David Tuller - Discussing PACE, Crowdfunding, ME/CFS Journalism, And Australia

Australian news

Friday 20 April 2018

 

From WithGustoTV on YouTube:

 

David Tuller
David Tuller
 

DAVID TULLER - Discussing PACE, Crowdfunding, ME/CFS Journalism, and Australia

WithGustoTV
Published on 19 Apr 2018

I sat down with David Tuller for an in-depth discussion of how he arrived in the ME/CFS space, his ongoing work debunking the farcical PACE trial, its Australian impact, the difficulties of publishing good journalism on the topic, and his plans for the future.

You can support David Tuller and find his work here:

Crowdfunding April 2018: https://crowdfund.berkeley.edu/projec...
Twitter: https://twitter.com/davidtuller1
Virology Blog: http://www.virology.ws/mecfs/

Question Timestamps:

4:11 - Interview starts
3:38 - Q1: What brought you to our sunny shores and how has your trip been so far?
5:52 - Q2: What originally sparked your interest in ME/CFS?
7:13 - Q3: Any reason you post on Virology blog as opposed to making your own blog?
18:48 - Q4: Your work is currently made financially possible through crowd-funding?
26:58 - Q5: I can imagine crowd-funding has the potential to be both stressful and rewarding?
30:37 - Q6: Why do you think the PACE authors and the Lancet are so defiant in the face such rigorous, sustained criticism?
33:24 - Q7: Adapted from Reddit user u/ASABM: What corrections would you like to see made in the PACE trial's published papers or is outright retraction the only proper solution?
35:00 - Q8: What do you make of certain researchers attempts to paint themselves as freedom-fighting martyrs in response to the careful criticism that to my mind are leveled not against them specifically but rather against the studies they've published?
36:22 - Q9: Under my specialists instructions, I'm still following the adaptive pacing principles as outlined by the UNSW Lifestyle Clinic. I understand you're talking to people like myself who've undertaken the same program. What kind of things have you been hearing so far?
41:38 - Q10: Do you think there's a way for the ME/CFS community to bridge the gap between us and those who endorse PACE?
43:23 - Q11: What are your priorities for the year ahead? (From Reddit user u/JosephStash)
45:31 - Q12: What should ME activists be highlighting to the public in order to raise our profile? (From Reddit user u/JosephStash)
48:32 - Q13: Are you aware of anyone else in our Parliament that may be receptive to our cause? (From Reddit user u/JameseyJones)
50:18 - Q14: How do you think we can recruit more journalists like you to investigate and report accurately on ME/CFS?
54:55 - Q15: How did you become such a bad ass mofo? (From Reddit user u/travellingbrooke)

 

 

Full article…

 
 
 

Trial By Error: Professor Michael Sharpe's Gaffe On Australian Radio

Australian news

Friday 20 April 2018

 

From Virology Blog:

 

David Tuller
David Tuller
 

Trial By Error: Professor Michael Sharpe’s Gaffe on Australian Radio

By David Tuller, DrPH
Wednesday 18 April 2018

*A clarification has been added to this post–see below

It’s Thursday morning in Australia, and I’ve just arrived in Brisbane after a red-eye from Perth, with a week left to go on my tour Down Under. Of course I’m backed up on things I need to write about, and hope to have some down time soon to pull stuff together. (I only post on here from Monday to Wednesday, because Professor Racaniello posts from Thursday to Sunday. I’m doing this post now from the Brisbane airport so I can get it up before Wednesday ends in New York.)

First, for those keeping track, here is yet another clip of me talking. This is a conversation with young Australians with ME/CFS. They “meet” regularly for video chats, and invited me to join them a couple of weeks ago. I enjoyed hanging out with them online and suggested that I didn’t have to be in Australia for us to do this again:

https://www.youtube.com/watch?time_continue=2&v=n2ww1uayF-U

**********

Since criticizing my crowdfunding efforts, Professor Michael Sharpe has continued his quixotic and silly twitter campaign to rebut his many critics. I have chosen for now not to engage with him further, since he is apparently impervious to reasoned argument. Of course, his self-portrayal as the aggrieved party in the PACE saga is unattractive and untrue.

 

Full article…

 
 
 

Scientists Discover Some Kissing (Disease) Cousins

Australian news

Friday 20 April 2018

 

From Australia's Science Channel:

 

Epstein-Barr virus
An Epstein-Barr virus erupts from an infected
immune cell, called a B lymphocyte.
(Credit: Analytical Imaging Facility at
the Albert Einstein College of Medicine
)
 

Scientists discover some kissing (disease) cousins

Epstein-Barr virus is infamous for causing mononucleosis – aka the kissing disease – but its impact may be even more far reaching and damaging.

Topics: The Body
April 18, 2018
© 2018. Australia's Science Channel. All rights reserved.

Scientists at Cincinnati Children’s Research Foundation in the US report that Epstein-Barr virus (EBV), known as the virus that causes “mono” or glandular fever, also increases the risk of some people developing seven other major diseases, including multiple sclerosis, rheumatoid arthritis and type 1 diabetes.

In a far-reaching study they showed that a protein produced by EBV, called EBNA2, binds to multiple locations along the human genome that are associated with these diseases.

Their findings shed new light on how environmental factors, such as viral or bacterial infections, poor diet, pollution or other hazardous exposures, can interact with the human genetic blueprint and have disease-influencing consequences. However, they say its full impact could take years to explore.

 


Video courtesy of the Cincinnati Children’s Hospital.

 
 
 

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