Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
   
Become a Member
PDF Application Form
(Interactive Word document, 161KB)
Why become a member?

Facebook
 
 
ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

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: Diana Bordean, a physiotherapist who helps people with Fibromyalgia and ME/CFS.
Topic: What can your physiotherapist do for you?
Plus... ME/CFS Life Hacks. Bring along your favourite disability aid, piece of equipment or device. A Travelscoot and electric wheelchair will be available on the day to try out.

Saturday 11 August 2018
Annual General Meeting
1:30pm
Speaker: Dr Mona Kaur
Topic: Gut Health & ME/CFS
New Venue: SACOSS, 47 King William Rd, Unley

Saturday 24 November 2018
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
PO Box 322,
Modbury North,
South Australia 5092
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

 

Mother Speaks About The Difficulties Of Raising A Teenage Son With Chronic Fatigue Syndrome - And Reveals He Hasn't Been Able To Leave His House In Nearly A YEAR

International news

Monday 22 October 2018

 

From the Daily Mail Australia's FEMAIL:

 

Jem Temm and son Luke
Jen Temm (pictured with Luke) said when her son
first got sick they took him to the family GP who
thought he was suffering a nasty viral infection.
(Photo: © supplied Jen Temm)
 

Mother speaks about the difficulties of raising a teenage son with Chronic Fatigue Syndrome - and reveals he hasn't been able to leave his house in nearly a YEAR

  • Jen Temm, of Sydney, has spoken about how CFS affects her 15-year-old son
  • She says he first became ill with flu-like symptoms when he was just 10-years old
  • His diagnosis means he can't go to school and is often bedbound for weeks
  • For more information about ME/CFS please visit Emerge Australia

By Emilia Mazza for Daily Mail Australia
21 October 2018
© Associated Newspapers Ltd

A mother has spoken about the stress and fear of raising a teenager who suffers from Chronic Fatigue Syndrome - a condition that will be with him for the rest of his life.

Jen Temm, 53, from Sydney's Chatswood, has a 15-year-old son, Luke, and for the past five years he's been constantly unwell - and heartbreakingly there's no end in sight.

'Luke first became ill when he was 10,' Ms Temm recalled. 'He caught a winter flu that never seemed to quite clear up.'

'We first took him to our usual GP and she thought it was a nasty viral infection, and told us to let him rest.'

But Luke didn't get better and his symptoms continued to become more severe.

 

Full article…

 
 
 

Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 22 October 2018

 

From Bridges and Pathways:

 

Adelaide University
 
 
Robinson Research Institute

 

Fibromyalgia Research Healthy Volunteers Wanted

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

For further information about the fibromyalgia syndrome, please see also the following link.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 22 October 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 22 October 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…

 
 
 

A 16-Year-Old Girl With Fibromyalgia Got A 'Halloween'-Themed Birthday Surprise After All But Two Friends Canceled On Her Party

International news

Sunday 21 October 2018

 

From US news outlet Insider:

 

Sean Krumbholz and his daughter, Aeris
Sean Krumbholz and his daughter, Aeris.
(Photo courtesy of Sean Krumbholz)
 

A 16-year-old girl with fibromyalgia got a ‘Halloween’-themed birthday surprise after all but two friends canceled on her party

By Kelly McLaughlin
October 19, 2018
* Copyright © 2018 Insider Inc. All rights reserved.

  • Sean Krumbholz, of Charleston, South Carolina, took to Twitter and Reddit on Thursday to tell his followers about his daughter, Aeris, and her upcoming birthday.
     
  • Aeris, who has fibromyalgia, had a Michael Myers-themed party planned for Friday night and all but two friends canceled at the last minute.
     
  • Krumbholz asked for help from producer Jason Blum, and actors Jamie Lee Curtis and Danny McBride to see if they could help cheer his daughter up — and Blum responded.

A 16-year-old girl with fibromyalgia got a "Halloween"-themed birthday surprise from the film's producer Jason Blum after all but two friends canceled on her Michael Myers-themed party.

 

Full article…

 
 
 

Paediatric ME/CFS

International news

Sunday 21 October 2018

 

From Voices from the Shadows:

 

Children
 

Paediatric ME/CFS

October 21, 2018
© 2018 Voices from the Shadows. All Rights Reserved.

Two world renown ME/CFS paediatricians, Prof Peter Rowe and Dr Nigel Speight, discuss paediatric ME/CFS diagnosis and management in two short videos for medical professionals, following publication of the comprehensive manual Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer published in Frontiers 2017.

Peter Rowe MD is a Professor of Paediatrics and is Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore, USA. His areas of clinical expertise include chronic fatigue syndrome, fibromyalgia and orthostatic intolerance. Prof Peter Rowe played a major role in the production of the recent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He was also a member of the team which produced the very influential report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Published in 2015 by the National Academy of Medicine, USA, it includes diagnostic criteria, a clinicians guide and a comprehensive literature review.

Dr Nigel Speight is a consultant Paediatrician with a long standing special interest in ME, based in Durham, UK. He is a medical advisor for several charities including the ME Association, The Young ME Sufferers Trust and the 25% ME Group. Dr Speight was among the expert ME/CFS paediatricians contributing to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. He previously contributed to the Myalgic Encephalomyelitis International Consensus Criteria and its related “Primer’ for Medical Practitioners. 2011 He served on the Chief Medical Officer’s Working Party on ME 2002 and also the College of Paediatrics and Child Health Guidelines Group 2004.

 

Full article…

 
 
 

HealthRising: The Metabolic Trap Shines During The Symposium On The Molecular Basis Of ME/CFS At Stanford

International news

Sunday 21 October 2018

 

From the Open Medicine Foundation:

 

Dr. Robert Phair
Dr. Robert Phair
 

HealthRising: The Metabolic Trap Shines During the Symposium on the Molecular Basis of ME/CFS at Stanford

By Cort Johnson
October 19, 2018
Copyright © 2018 Open Medicine Foundation. All Rights Reserved.

A New Approach To Chronic Fatigue Syndrome

If we ask Nature a question and ask it well, Nature answers. Most of the time the answer refutes our hypothesis. This time, Nature didn’t refute the hypothesis. Robert Phair

Ron Davis mentioned one of chronic fatigue syndrome’s aces in the hole several times – the chance to make a huge difference in a major disease. You could work for decades on cancer and make a difference there – an important difference but probably a small one, or you can take on something like ME/CFS and potentially make a huge difference. One of the reasons we have so many creative researchers in this small field may be because the ME/CFS challenge draws inquisitive minds.

Phair certainly has an inquisitive mind. He was one of the most active participants in the three-day Working Group session put together by Ron Davis and the Chronic Fatigue Syndrome Research Center at Stanford University. On the fourth day, the Working Group was featured in the Community Symposium on the Molecular Basis of ME/CFS at Stanford University. Both were sponsored by the Open Medicine Foundation with a special thank you to OMF Board Member Dr. Deborah Rose.

Phair’s a rare breed – a biological systems engineer. When he started out he caught grief from both sides; his father couldn’t understand why he would top off a good degree (electrical engineering) with a PhD in a bad one (physiology), and the biologists in academia didn’t get him either. He ended up forming his own company, Integrative Bioinformatics, Inc. which produces “models for biomedical discovery”.

That dual focus, however, fits right into Ron Davis’s mold. Davis, geneticist and inventor, after all, is his own unusual blend. He doesn’t run the Stanford Genome Center, he runs the Stanford Genome Technology Center – a blend that adds a pragmatic bent to his efforts. Davis is not an ivory tower theorist: his forte is creating tools that impact human health. Robert Phair – engineer and physiologist – must have seemed like a kindred spirit. Davis said he’d been looking for a systems engineer for a while.

(It bears reminding that the originator of the Metabolic Trap Hypothesis – Robert Phair – came to ME/CFS via an article in a Stanford magazine about Whitney Dafoe and ME/CFS. Sharing makes a difference. The more stories we get out, the more people who know about the disease, and the better chance we have of finding someone who will solve it.)

 

Full article…

 
 
 

A New Immunotherapy Paradigm: It's Not Just For Cancer Anymore

Australian news

Sunday 21 October 2018

 

From Clinical Leader:

 

Fibromyalgia
 

A New Immunotherapy Paradigm: It's Not Just For Cancer Anymore

By Ed Miseta, Chief Editor, Clinical Leader
Follow Me On Twitter @EdClinical
October 19, 2018
Copyright © 1996-2018 VertMarkets, Inc. All Rights Reserved.

Getting a new drug approved by the FDA and then convincing physicians to prescribe it is always a challenge. When healthcare providers believe a patient’s condition is not really a disease, rather something that is psychosomatic, a patient’s head, the challenge becomes more difficult.

Dr. Bruce Gillis, CEO of EpicGenetics, faces that challenge every day. Gillis and his company are working to find a treatment for patients with fibromyalgia, a condition that many physicians are not convinced is a real disease.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 21 October 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

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 21 October 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…

 
 
 

BRETT LIDBURY - Finding ME/CFS Biomarkers Using Big Data & Collaboration

Australian news

Saturday 20 October 2018

 

From Australian ME/CFS advocate Gusto Cohen on YouTube:

 

Associate Professor Brett Lidbury
Associate Professor Brett Lidbury.
(Photo: The Australian National University, Canberra)
 

BRETT LIDBURY - Finding ME/CFS Biomarkers using Big Data & Collaboration

By WithGustoTV
Published on 19 Oct 2018

I sat down with Assoc. Prof. Lidbury on International ME/CFS Awareness Day to discuss his role in using massive data sets and working with multiple labs to draw insights into the condition.

We touch on the importance analysing human biology over mouse biology, appreciating patient expertise, and the challenges involved with drawing researchers and funding to the area.

Associate Professor Brett Lidbury is an ANU Researcher at the National Centre for Epidemiology and Public Health (NCEPH) in Canberra. His areas of expertise are in Medical Virology, Biostatistics, Infectious Diseases and Pathology (Excl. Oral Pathology).

For more information about NCEPH: http://rsph.anu.edu.au/research/centr...

FOLLOW GUSTO:
FACEBOOK......• https://www.facebook.com/WithGustoTV/
TWITTER........• https://twitter.com/WithGustoTV
INSTAGRAM.....• https://www.instagram.com/WithGustoTV/

 

 

Full article…

 
 
 

Chronic Pain Patients Rally, Say They Are Being Punished By New Opioid Guidelines

International news

Saturday 20 October 2018

 

From US newspaper the Springfield News-Leader:

 

Kim Patty
Kim Patty holds a sign near the intersection of
National Avenue and Primrose Street
during a rally
outside of Cox South Hospital on Tuesday, Sep. 18, 2018.
Chronic pain patients held the rally because they say
they are being punished by recent CDC guidelines
that discourage doctors from writing
prescriptions for pain medication.
(Photo: Andrew Jansen/News-Leader)
 

Chronic pain patients rally, say they are being punished by new opioid guidelines

By Jackie Rehwald, Springfield News-Leader
September 18, 2018
© 2018 Springfield News-Leader

Despite the 90-degree-plus temperatures, Cheryl Ostrander stood on the corner of National Avenue and Primrose Street for two hours Tuesday afternoon.

Her sweaty pink t-shirt said: "Yes, they are fake. The real ones tried to kill me."

She carried a sign that read: "Don't punish pain. I'm not a criminal."

Ostrander was diagnosed with breast cancer in 2008 and has had two mastectomies and several reconstruction surgeries. She's had a total knee replacement and two spinal fusion surgeries. And she's been diagnosed with fibromyalgia.

"I am struggling really hard just to stay here," she said. "I am in pain just like every day of my life."

"I'm a mess," Ostrander said. "But I don't deserve to be treated like a criminal to get my pain medication."

 

 

Full article…

 
 
 

Katie Boulter Hoping To Inspire Others After Battling Chronic Fatigue To Reach Top 100 Of WTA Rankings

International news

Friday 19 October 2018

 

From UK newspaper the Evening Standard:

 

Katie Boulter
Drive | Katie Boulter at Wimbledon this year,
where she reached round two.
(Photo: Matthew Lewis/Getty Images)
 

Katie Boulter hoping to inspire others after battling chronic fatigue to reach top 100 of WTA rankings

By Lizzie Edmonds
October 18, 2018
© 2018 Evening Standard

Tennis star Katie Boulter hopes to inspire young people with debilitating conditions to “achieve their dreams” after battling chronic fatigue syndrome to make the world top 100.

Boulter, 22, this week became the first Briton to break into the 100 leading women for two and a half years, climbing to 96 in the WTA rankings.

 

Full article…

 
 
 

Glasgow Artist Giving Insight Into Chronic Illness Suffered By Lady Gaga

International news

Friday 19 October 2018

 

From Scottish newspaper the Evening Times:

 

Amy Rosa
Amy Rosa
 

Glasgow artist giving insight into chronic illness suffered by Lady Gaga

By Catriona Stewart
17th October, 2018
© 2011-2018

IT is an illness with no known cause, no known cure and which very few people know about.

But for Amy Rosa, a diagnosis of fibromyalgia syndrome (FMS) came as a relief.

The 31-year-old had been suffering from a varied collection of illnesses over a long period and was desperate to find answers.

Although there is no set treatment for FMS, the diagnosis meant she was finally being believed that her symptoms are real.

Amy said: "GPs aren't always trained in the symptoms of chronic illness, they aren't always good at looking at overall patterns and tend to treat each separate ailment individually.

"It was difficult for my doctor because I was presenting with so many different symptoms but ended up having quite a good relationship because it was such a long journey to diagnosis.

"There was a relief to having a diagnosis because it meant I was being believed that there was something really wrong."

FMS has recently been in the headlines due to two celebrities speaking out about the conditions.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 19 October 2018

 

From the UK's Chronic Illness Inclusion Project:

 

Chronic Illness Inclusion Project
 

Chronic Illness manifesto survey

About this survey

This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.

This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.

The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.

The Chronic Illness Inclusion Project is a research project led by people with chronic illness and supported by the Centre for Welfare Reform. It is part of the DRILL programme of disability research and is funded by Big Lottery Fund. Find out more about DRILL here.

 

Begin the survey here…

 
 
 

Exclusive: Science Journal To Withdraw Chronic Fatigue Review Amid Patient Activist Complaints

International news

Thursday 18 October 2018

 

From Reuters:

 

Books
 

Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints

By Kate Kelland
October 18, 2018
© 2018 Reuters. All Rights Reserved.

LONDON, Oct 17 (Reuters) - A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients.

The decision, described by the scientists involved as “disproportionate and poorly justified”, is being seen as a victory for activists in a research field plagued by uncertainty and dispute over whether CFS, also known as myalgic encephalopathy (ME), has physical and psychological elements.

Emails seen by Reuters show editors at the influential Cochrane Review journal asking researchers who conducted the analysis, which was published in April 2017, to agree to it being temporarily withdrawn.

They also ask the review’s authors to agree to a statement saying their analysis requires “further work in response to feedback and complaints”.

 

Full article…

 
 
 

'My Son Hasn't Left The House In A Year'

Australian news

Thursday 18 October 2018

 

From SBS:

 

Jen Temm with son Luke
Jen Temm with son Luke
 

'My son hasn't left the house in a year'

By Jen Temm
Source: SBS Insight
17 October 2018
Copyright © 2018 SBS

Every parent knows the stress and fear of caring for an ill child. But what happens when that illness lasts for years?

For our family it’s been five years, with no end in sight.

I think parenting is much the same, whatever your situation. You want your child to be happy and fulfilled, you help manage their health, you support them in every way. It’s just a bit more intense for us: the consequences of getting it wrong can be catastrophic.

Five years ago when Luke was 10 years old, he fell ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. It started with persistent, flu-like symptoms but gradually became more severe: just being upright now can send his heart racing and his blood pressure plummeting. He hasn’t left his home for nearly a year and is often bedbound for weeks at a time.

 

Full article…

 
 
 

'I'm 33 And Have Been Living In Aged Care For Eight Years'

Australian news

Wednesday 17 October 2018

 

From The Sydney Morning Herald:

 

Ketra Wooding
Ketra Wooding, who has chronic fatigue syndrome,
lives in aged care at 33.
 

'I'm 33 and have been living in aged care for eight years'

By Ketra Wooding
16 October 2018
Copyright © 2018 Fairfax Media

I’m 33 and I live in a dementia ward, which is exactly as bad as you imagine.

But I’m not here because I have dementia. I’m here because it is the quietest (except when the residents are yelling), least perfume-saturated ward. I need my environment to be quiet and chemical free because I have Multiple Chemical Sensitivities (MCS) and ME (Myalgic Encephalomyelitis) sometimes called Chronic Fatigue Syndrome (CFS or ME/CFS).

 

Full article…

 
 
 

South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 17 October 2018

 

From Bridges & Pathways:

 

MRI scan
 

Fibromyalgia Research Healthy Volunteers Wanted

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.

For more information see Participant Information Sheet and for a summary of previous research see the link.

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 17 October 2018

 

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

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 283KB)

 
 
 

'Insight' On Chronic Fatigue Syndrome: Andrew's Experience

Australian news

Tuesday 16 October 2018

 

From ME Australia:

 

Andrew Bretherton
Andrew Bretherton
 

‘Insight’ on chronic fatigue syndrome: Andrew’s experience

Author: ME news Australia
Date: October 15, 2018
© 2018 ME AUSTRALIA

Andrew Bretherton was working as a personal trainer, kung fu and basketball coach and finishing a psychology and sports science degree when he became ill. He is now mostly housebound due to ME.

He tried graded exercise therapy at a Melbourne clinic where he was blamed for his illness, told he was averse to exercise and had the wrong type of personality.

Andrew wanted to go on SBS’ Insight to show what it’s like for the average patient.

[Note: The Insight episode featuring ME/CFS airs on Tuesday 16 October 2018 at 8:30 PM, and is repeated Wednesday, 17 October 2018 at 3:30 PM.]

“I can only imagine how bad it would be for someone who didn’t have a sports science or psychology background going through all this and then believing ‘oh okay, maybe it is in my head’ or what they were doing is acceptable practice when it’s not.”

While some participants on the show – Luke, Ketra and Andrew – were assessed using the International Consensus Criteria for ME, Andrew pointed out misdiagnosis is an issue and overtraining syndrome in athletes is referred to as ‘chronic fatigue’ which leads to confusion.

Three hours of filming took a toll on Andrew and it didn’t help that the Melbourne graded exercise and cognitive behavioural therapy clinic staff continued to contact him after the program, even joining closed patient Facebook groups.

Andrew would do it again, if he had the chance, and doesn’t regret going on Insight.

“It’s not often you get a chance to confront your abuser, so it was therapeutic for me in that sense. I only regret that they focused more on outdated modes of practice, but we do need people to stand up and put forward the message of real science and show that these dinosaur practices of treatment (graded exercise therapy and cognitive behavioural therapy) are harmful to patients.”

 

Full article…

 
 
 

A Tricky Condition

International news

Tuesday 16 October 2018

 

From New Zealand news outlet Otago Daily Times:

 

Woman
 

A tricky condition

By Ian Munro
Monday, 15 October 2018
© Copyright Allied Press Limited 2018. All rights reserved.

For teenagers in their senior high school years, the impact of ME can be significant and extremely debilitating, says parenting columnist Ian Munro.

I last wrote about myalgic encephalomyelitis (ME) almost eight years ago having touched on it eight years before that, so it seemed opportune to revisit the subject to see what progress has been made in understanding the condition.

 

Full article…

 
 
 

Get To Know Scotch Plains School Candidate: Tonya Williams

International news

Tuesday 16 October 2018

 

From US news outlet Scotch Plains Patch:

 

Tonya Williams
Tonya Williams
 

Get To Know Scotch Plains School Candidate: Tonya Williams

Tonya Williams is one of the five candidates running for election in the contested 2018 Scotch Plains School Board election on Nov. 6.

By Alexis Tarrazi, Patch Staff
October 9, 2018
© 2018 Patch Media. All Rights Reserved.

SCOTCH PLAINS, NJTonya Williams is one of the five candidates running for election in the contested 2018 Scotch Plains School Board election being held on Tuesday, Nov. 6.

There are five candidates vying for the three three-year seats on the board. Candidates include: Sean Keagan Foley, Debora J. Brody, Karen Kulikowski, Tonya Williams and Alfonse G. Akins.

Tonya Williams

Description:

I am running for the Board of Education for my second term. I am a Scotch Plains native and graduated from Scotch Plains-Fanwood in 1987 and then I attended Kean University majoring in Psychology.

I'm a local business owner in Scotch Plains working as an Integrative Health Coach. My focus and expertise are seniors and working with women [with] Chronic Fatigue Syndrome.

 

Full article…

 
 
 

Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?

South Australian news

Tuesday 16 October 2018

 

Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.

 

Bridges & Pathways
 

What should be considered in the design of a clinic to treat complex health conditions?

By Cathie Powell
Copyright © 2018 Bridges & Pathways.

We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.

This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.

While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.

We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.

As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.

Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.

For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues

Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.

When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!

What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.

Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?

Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.

https://www.surveymonkey.com/r/CFF2SGZ

Thank you in advance. If you need help please ask your carers to assist you.

Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team.
South Australian ME/CFS/FMS Clinical & Research Collaboration
c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com

 
 
 

More In The News


Home | Welcome | In the News | ME/CFS Australia (Victoria) | The Society | Become a member | About ME/CFS | Medical | Links | Multimedia | Contact the Society | Volunteer positions
Copyright © ME/CFS Australia (SA) Inc
www.sacfs.asn.au
Privacy Policy
Email: sacfs@sacfs.asn.au
Site maintained by Peter Scott