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ME/CFS Australia Ltd
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SAHMRI

Donate to SAHMRI
(South Australian Health & Medical Research Institute)

Your generous donation today will transform the lives of over 100,000 Australians living with ME/CFS.

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ME/CFS SOUTH AUSTRALIA 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 South Australia 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 South Australia 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 South Australia Inc wishes to thank Eco Pest Control for its support of the Society.

 

SOCIETY SEMINARS FOR 2020
We are disappointed to say that due to COVID-19 and the need to self-isolate, we are unable to offer seminars until it becomes safe for our community to gather together.
 
We are currently looking at alternative ways of connecting within our community.
 
 

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 South Australia 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

 

Coronavirus (COVID-19) & ME/CFS

International news

Saturday 30 May 2020

 

Advice from US ME/CFS specialist Nancy Klimas, MD:

 

COVID-19 & ME/CFS

NSU Institute for Neuro-Immune Medicine
13 March 2020

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Saturday 30 May 2020

From the South Australian Health & Medical Research Institute (SAHMRI):

 

SAHMRI
 

Donate To SAHMRI

Your support can help improve the lives of people suffering with ME/CFS

Can You Help?

Can you imagine living every day where every system in the body is affected so that you become housebound or bedridden?

On Sunday, 12 May the South Australian Health and Medical Research Institute (SAHMRI) joined a global day of action campaign to raise awareness and funding for Dr Michael Musker's research studies in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).

Your generous donation today will transform the lives of over 100,000 Australians living with this debilitating disease.

"We aim to complete meaningful clinical research projects in collaboration with the ME/CFS community that will enhance the scientific knowledge, developing evidence that can grow over time, and be shared through publication enhancing the international research in this space. It is our vision to promote evidence of biological changes in those who are suffering from ME/CFS at different stages of wellness. Informing diagnostic intelligence and enhancing biological exploration of ME/CFS."
– Dr Mike Musker.

 

Donate now…

 
 
 

'How ME Has Left Me Grieving For The Life I Used To Have'

International news

Friday 29 May 2020

 

From UK newspaper The Yorkshire Post:

 

Tracey Barraclough
Tracey Barraclough, of Calverley,
Leeds, who suffers from ME.
(Picture: James Hardisty)
 

‘How ME has left me grieving for the life I used to have’

May is ME Awareness month. Here Tracey Barraclough explains what it it is like living with the chronic condition that affects thousands of people in the UK.

By The Newsroom
Wednesday, 27th May 2020
©JPIMedia Publishing Ltd. All rights reserved.

I see people out running and feel a twinge of jealousy. They don’t know how lucky they are, to feel the freedom and exhilaration. That used to be me. I especially loved running in the rain, the water refreshing and cooling. I dream that one day I’ll run again.

In February 2018, I was diagnosed with Chronic Fatigue Syndrome (hate that name) or ME as it’s also known, which stands for myalgic encephalomyelitis. It’s a multi-complex neurological disease.

It’s debilitating, unpredictable, and affects 265,000 people in the UK at a cost of more than £3.3bn to the economy, and yet little seems to be known about this life-changing condition, and a scant amount of money is invested in to research.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 29 May 2020

 

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…

 
 
 

COVID-19 May Cause Hallmark ME/CFS Post-Exertional Malaise

International news

Thursday 28 May 2020

 

From The Mighty (via Yahoo! News):

 

Blonde, white woman laying face down on a bed
Blonde, white woman laying face down on a bed
 

COVID-19 May Cause Hallmark ME/CFS Post-Exertional Malaise

The Mighty Staff
May 27, 2020
© 2020 The Mighty & Yahoo! News.

What you should know: On Sunday, Autostraddle senior writer Heather Hogan posted an update on Facebook about her recovery from COVID-19. She’s on her 10th week of symptoms, and she shared one of the most debilitating right now is post-viral fatigue syndrome (PVFS), the twin of post-exertional malaise people with ME/CFS experience.

This fatigue I’m talking about, which isn’t just feeling tired or sleepy, but like there’s no bones in my body and gravity is pushing down extra hard on me, to the point that I can’t lift my arms above my head. — Heather Hogan

I'm entering week ten of COVID symptoms. My first few weeks played out in the mild respiratory way, which was mild only…

Posted by Heather Hogan on Monday, May 25, 2020

The Frontlines: COVID-19 causes a wide range of symptoms, and lingering post-viral fatigue seems to be another among those who have more mild cases of the virus. This type of fatigue, which most often occurs after exerting any kind of energy (as little as eating a bowl of oatmeal), is also a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

 

Full article…

 
 
 

Dialogues - Severe & Very Severe ME/CFS

International news

Thursday 28 May 2020

Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.

 

From dialogues-mecfs.co.uk (via Vimeo):

 

Dialogues-SevereME P1

By Josh
27 May 2020

This video is from the project 'Dialogues from a Neglected Illness’ - supported by a Wellcome Public Engagement Fund Award 2018 / 21. The project addresses different aspects of ME/CFS and includes interviews and input from doctors, researchers, patients, carers and advocates.

Produced by Natalie Boulton, with cameraman and editor Josh Biggs.

Please go to the project website dialogues-mecfs.co.uk for more information and to see other videos

 

Dialogues-SevereME P1 from Josh on Vimeo.

 

Full article…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Wednesday 27 May 2020

 

From ProHealth:

 

Woman with tablet
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

ProHealth.com
October 1, 2019
Copyright © 2019 ProHealth, Inc. All rights reserved.

Editor’s note: Do you feel like some people treat you differently because you have fibromyalgia? And if you take an opioid medication to help ease your pain, do you feel like people are judging you?

Researchers Drs. Andrea Pfalzgraf and Kim Jones are looking into whether people with fibromyalgia feel invalidated or stigmatized, and if so, how that is affecting their lives. If you have fibromyalgia, you can help them by filling out their survey and sharing your experiences.

Have you experienced stigma related to having Fibromyalgia?

National University of Natural Medicine, University of Washington, and Linfield College is conducting research on the topic of invalidation and stigma in adults who have been diagnosed with fibromyalgia. Invalidation refers to “discounting” and a “lack of understanding” which people with fibromyalgia receive from their social environment.

The purpose of this study is to gather information from adults who have been diagnosed with fibromyalgia about the following:

  1. Perceptions of Invalidation
  2. Perceptions of Opioid-Related Stigma

This study involves completing a one-time, online survey which should take about 30 minutes. Please note the survey is completely confidential and no personal identification of your information can be made. Your participation is essential to understand the impact of invalidation and stigma on people with fibromyalgia, particularly in relationship to using opioid pain medications. Your input will provide valuable information which will enhance scientific literature and may ultimately help improve patient care and treatment outcomes.

If you have any questions regarding this survey, please contact the Principal Investigator, Andrea R. Pfalzgraf, MPH, PhD at apfalzgraf@nunm.edu.

Please click on the link below (or copy and paste into a new browser) to complete the fibromyalgia survey and share your experiences.

https://survey.iad1.qualtrics.com/jfe/form/SV_bdwWcD2Pvpscd8x

Thank you in advance for your time and input!

Dr. Andrea R. Pfalzgraf, PhD, MPH
Research Fellow
National University of Natural Medicine & University of Washington

Dr. Kimberly Dupree Jones, PhD, FNP-BC, RN, FAAN
Dean & Professor
Linfield College, School of Nursing

 

Full article…

 
 
 

Welsh Pair With Fibromyalgia Shave Heads For Nevill Hall Hospital

International news

Tuesday 26 May 2020

 

From Welsh newspaper the South Wales Argus:

 

Catherine and Barbara
Catherine and Barbara.
 

Gwent pair with fibromyalgia shave heads for Nevill Hall Hospital

By Jonathon Hill
Trainee Reporter
25th May 2020
©Copyright 2001-2020.

A PAIR of inspirational Gwent women have raised more than £1,000 for the NHS – £900 more than their initial target – by shaving their heads.

Catherine Norris from Abertillery and Barbara Williams from Cwm, who both suffer with fibromyalgia – a condition which causes pain all over the body – explained how they couldn’t do anything rigorous, but were committed to doing something for the NHS during the pandemic.

“I put on Facebook that I was going to brave the shave and Catherine said she’d join me,” Mrs Williams said. “My husband thought I was mad, but I wanted to do something to contribute and it dawned on me this was the best way.”

After her post was shared around social media, Mrs Williams said she was astonished to see the money rise so quickly.

 

Full article…

 
 
 

When Your Body's Pain Volume Is Always Turned Up

International news

Tuesday 26 May 2020

 

From Kenyan newspaper The Standard:

 

Woman
 

When your body’s pain volume is always turned up

Pretty soon though, the pain began manifesting in other parts of her body.

By Beldeen Waliaula
May 25th, 2020
© 2020 Standard Group PLC.

To feel pain more intensely than most, where scraping a knee feels like you have been hit by a sledgehammer, is something Laura Litaba has had to live with.

Although she was always a sickly baby, and even though throughout her school-going years she had incessant back pains and headaches, Laura didn’t think that her health could get any worse.

But it did. At least a few decibels of pain higher when in 2011 she began experiencing splitting headaches, and no painkiller could take away the pain.

“Sometimes I would take more than the recommended dosage,” she says.

While between migranes, she decided to see a specialist who would hopefully tell her why she couldn’t get a reprieve from the pain in her head.

But the neurologist told her he couldn’t find a thing wrong with her head. And so, defeated, Laura trudged back home.

Pretty soon though, the pain began manifesting in other parts of her body.

“I had back pains, chest pains and fatigue that I couldn’t explain away. I could sleep for more than 12 hours but still wake up very tired,” she says.

Just as she had through her childhood, she decided to grit through her pain and live life, at least as much as she could and as pain-free as she could manage.

She even joined university where her musical gift shone brightly. She was determined to live fully through the pain. But in 2016, things began falling apart.

“I was just back in the country after participating in a music concert and my body was aching all over. I brushed it off thinking that it was due to the travel and had probably picked up a bug. But a visit to the doctor showed I had rheumatoid arthritis,” she says.

Laura had never heard of the disease. And the doctor didn’t care to explain it to the shell-shocked Laura.

“He prescribed the drugs and sent me on my way. But even with the medication, the pain remained and even got worse. My aunt, a paediatrician, recommended that I see a rheumatologist.”

And so she did. After a battery of tests, the rheumatologist confirmed she had fibromyalgia.

 

Full article…

 
 
 

Study: Impact Of Fatigue In CFS – Call For Research Participants

Australian news

Tuesday 26 May 2020

 

From the University of Tasmania (via email):

 

University of Tasmania
 

Impact of Fatigue in CFS

Call for Research Participants
Aged between 18 and 65 years

We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study investigating fatigue and its impact on everyday functioning.

As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.

Participation in this study is entirely voluntary.

To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:

www.surveymonkey.com/r/F523WCY

Impact of Fatigue in CFS - Study

Contact: Ms Kate Donnelly (kated@utas.edu.au)
OR Dr Cynthia Honan (cynthia.honana@utas.edu.au)
College of Health & Medicine, University of Tasmania

This study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee.

 

PDF Download flyer (PDF, 174 KB)

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 26 May 2020

 

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

 
 
 

Kara Jane Spencer: More Than 100 Musicians Offer Help On Album

International news

Monday 25 May 2020

 

From BBC News:

 

Kara Jane Spencer
Kara Jane Spencer has been recording
her vocals one line at a time.
 

Kara Jane Spencer: More than 100 musicians offer help on album

By Ethan Connolly-Forster
BBC News, East Midlands
24 May 2020
Copyright © 2020 BBC.

A seriously ill singer "who did not expect to live" to see her album recorded, hopes to release a song after more than 100 people offered help.

Kara Jane Spencer, from Derbyshire, has a severe form of ME which now requires full time nursing care.

She was "overwhelmed" with the level of support offered after appealing for help from musicians and technicians.

The 29-year-old now hopes to release a song in August and donate any profits to research into ME.

Ms Spencer was diagnosed with ME - short for myalgic encephalomyelitis - 13 years ago after suddenly losing the ability to walk.

The condition is described by the NHS as a long-term illness with a wide range of symptoms. Ms Spencer said her symptoms were so severe, doctors have warned it could shorten her life expectancy.

 

Full article…

 
 
 

ME/CFS South Australia Inc Co-Signs International Open Letter

South Australian news

Monday 25 May 2020

 

ME/CFS Australia (SA) Inc
 

ME/CFS South Australia Inc 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 South Australia Inc, also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Online Wellbeing Survey For Chronically Ill Young People

South Australian news

Sunday 24 May 2020

From UPLIFT (via ME/CFS South Australia on Facebook):

 

Survey
 

Online Wellbeing Survey For Chronically Ill Young People

7 March 2020

If you are a 16-25 year old Australian and living with a diagnosed chronic illness, researchers from Telethon Kids Institute and Curtin University want to hear from you.

Participate in an online survey about wellbeing or take part in a study of an online program that will help you build skills to be kinder to yourself. You will receive a voucher for taking part.

The online intervention and wellbeing surveys for young people with chronic conditions are both open for recruitment. Conditions include, e.g. asthma, allergy, arthritis, burns, cancer, diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, diabetes, pots syndrome, IBC/crohns/ulcerative colitis, multiple sclerosis, cystic fibrosis.

Trial of online wellbeing program: https://upliftproject.com.au/…/online-self-compassion-train…

Online wellbeing survey: https://curtin.au1.qualtrics.com/jfe/form/SV_0kdlJL9dgH7kqDb

www.upliftproject.com.au
#TelethonKids #MEcfsResearch

*******

UPLIFT Online Well-Being Program for Young People with Chronic Illness

In this project we want to find out whether an online program improves wellbeing for teens and young adults with a chronic physical illness. If you complete all of the surveys in this study, you will receive two $20 vouchers (your choice of JBHifi or BigW).

Living with an ongoing illness can be very hard. The UPLIFT program provides strategies that people can use to cope with some of these challenges and develop resilience. By participating in this research, you will help us to understand whether this program is helpful for young people with a chronic illness.

We are inviting you to take part in this study if you are:

Aged 16-25 years
Live in Australia
Currently have a diagnosed chronic physical illness, or are in remission

 

Begin the survey…

 
 
 

Petition: #NotEnoughForME

International news

Sunday 24 May 2020

 

From ME Action:

 

#NotEnoughForME
 

#NotEnoughForME

© 2019 The Myalgic Encephalomyelitis Action Network, All Right Reserved.

Join with #MEAction, and tell the NIH Institute Director, Dr. Walter Koroshetz, that his “plan” for Myalgic Encephalomyelitis (ME) is NOT ENOUGH.

This plan is not funded enough, not outcomes-focused enough and not urgent enough for a disease that has been neglected, stigmatized, and misdirected for over 30 years! We cannot wait several more decades to start the work. The NIH must allocate resources NOW to accelerate research!

#MEAction has sent the following letter to Dr. Koroshetz calling on him to take these five actions now:

  1. Provide set-aside funding for ME to accelerate research

  2. Organize meeting of ME experts to reach consensus on patient selection methods and criteria

  3. Fund the identification and validation of biomarkers

  4. Fund a clinical trials network and treatment trials

  5. Address disease stigma and lack of clinicians impeding research

 

Full petition…

 
 
 

More In The News


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