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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.

 

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

 

Donate To SAHMRI

South Australian news

Saturday 18 January 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…

 
 
 

Petition: #NotEnoughForME

International news

Saturday 18 January 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…

 
 
 

NIH Funds Chicago-Based Study Of Chronic Fatigue Syndrome And Mono In College Age Students

International news

Friday 17 January 2020

 

From DePaul University in the US:

 

Leonard A. Jason
Leonard A. Jason is a DePaul University psychology
professor who has studied chronic fatigue syndrome
primarily in adults for the past 30 years. He also is
director of the Center for Community Research in
DePaul's College of Science and Health.
(Photo: DePaul University/Jamie Moncrief)
 

NIH funds Chicago-based study of chronic fatigue syndrome and mono in college age students

DePaul University and Lurie Children’s Hospital lead research to uncover underlying mechanisms of disease by examining connections with infectious mononucleosis

DePaul University Press Release
January 16, 2020
© 2001-2020 DePaul University.

CHICAGO — Pathophysiological underpinnings of the development of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are still poorly understood, according to Leonard A. Jason, a DePaul University psychology professor who has studied chronic fatigue syndrome primarily in adults for the past 30 years.

“We need to know what causes one of the most debilitating health conditions, which is ME/CFS. The best way to figure this out is to identify healthy individuals and then observe what occurs when they are infected with something that might be triggering the disease, such as a virus, like Epstein-Barr virus, the cause of infectious mononucleosis, then to see who recovers and who does not and why,” said Jason, a principal investigator of a new five-year, $2.8 million study funded by the National Institute of Neurological Disorders and Stroke, one of the National Institutes of Health.

“This study may help identify risk factors that make certain individuals more likely to develop ME/CFS after an infection and may provide additional insights into biological causes of this debilitating disease,” said Vicky Whittemore, program director at the National Institute of Neurological Disorders and Stroke.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 17 January 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…

 
 
 

'It's Been A Grieving Process' - Northumberland Woman Determined Not To Let Condition Ruin Her Life

International news

Thursday 16 January 2020

 

From UK news outlet ChronicleLive:

 

Kate Stanforth
Kate Stanforth
(Image: Kate Stanforth)
 

'It's been a grieving process' - Northumberland woman determined not to let condition ruin her life

Kate Stanforth's childhood dream of becoming a professional dancer was crushed due to a chronic condition

By Rachael Nichol
15 January 2020
© 2020 Trinity Mirror North East.

From a young age, Kate Stanforth had a passion for dance.

And by the age of eight, she decided she wanted to be a professional ballerina.

After training seven hours a day, Kate was on track to fulfilling her childhood dream.

But one morning aged 14, her world was turned upside down.

Kate, from Stocksfield, became extremely poorly, could barely move and had no idea what was happening to her.

Looking back on the traumatic experience, the 24-year-old said: "It was horrific, the worst thing you can imagine but at the time I didn't feel anything because I was so ill.

"I could barely move and as I started to deteriorate I became paralysed, ended up bed-bound and my mum had to spoon feed me. I couldn't do anything for myself."

After a year of suffering and not knowing what was going on, Kate, was diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome.

 

Full article…

 
 
 

Fibromyalgia Study Seeking Participants To Complete An Online Survey

International news

Thursday 16 January 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 you 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…

 
 
 

6 Breastfeeding Positions For Moms With Chronic Pain

International news

Wednesday 15 January 2020

 

From Romper:

 

Mother and baby
 

6 Breastfeeding Positions For Moms With Chronic Pain

By Kinsey Gidick
January 14, 2020
© 2020 Romper.

Often misunderstood and misdiagnosed, chronic pain is commonplace for thousands of American women. For those who are pregnant or raising children, the challenges are immense. And as if living with chronic pain weren’t enough, the toll of parenting on top of it can be debilitating. Complicating things further is the process of breastfeeding. Thankfully, lactation experts have identified six breastfeeding positions for moms with chronic pain.

A 2012 study from The American Pain Society found that 25.3 million adults (11.2%) suffer from daily chronic pain. Irene Cullagh, an RN who has worked with mothers and babies for over 20 years and has been an International Board Certified Lactation Consultant (IBCLC) since 2006, tells Romper that moms with chronic pain do have hope.

“There are plenty of pain medications that are compatible with breastfeeding,” she says. “If your chronic pain condition has been treated with a medicine that is not safe for pregnancy, it may be safe for breastfeeding. Some moms with chronic pain conditions go into remission during breastfeeding.” For instance, in some mothers suffering from fibromyalgia, including writer Rita Brhel, hormones released from breastfeeding helped reduce fibromyalgia flares. For others, the pain may not be diminished, but that doesn’t mean there aren’t options for more comfortable breastfeeding positions.

 

Full article…

 
 
 

My Pro-Tips For Planning My Days And Managing The Unexpected With Fibromyalgia

International news

Wednesday 15 January 2020

 

From The Mighty (via Yahoo! Lifestyle):

 

Calendar
 

My Pro-Tips for Planning My Days and Managing the Unexpected With Fibromyalgia

By Kelly Lahy
The Mighty
January 11, 2020
© 2020 The Mighty and Yahoo! Lifestyle.

What a difference a day makes. This is my mantra every single day as a fibromyalgia warrior. I find mornings difficult and must motivate myself even on the best of days. I was never an early bird, but fibro has put to rest any idea that I would miraculously become one.

Lack of a good night’s sleep due to drowsiness from sleeping pills makes me more tired than usual. Some mornings, there is a feeling like a chisel bisecting my head, my body has been run over by a lorry, and I have caught the deadliest flu. My joints ache, my muscles are sore and spasm, my hands shake, my skin hurts to be touched, my body feels like it is covered with creepy crawlies and is being used as a pin cushion, my facial spasms affect my ability to see straight. I am more tired than I knew was humanly possible, and I cannot think straight to save my life. What’s my name? Then the panic sets in. I am in the middle of a dreaded fibro flare. And I am alone with a full calendar and a to-do list which grows longer as I sleep.

Since I was diagnosed with fibromyalgia over two years ago, I have become better at managing the unexpected. I wish someone had suggested half of these things to me. So, I hope this helps even one person out there in our great community.

 

Full article…

 
 
 

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

Australian news

Tuesday 14 January 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 inevstigating 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)

 
 
 

The Hollow Man

Australian news

Monday 13 January 2020

From Australia's ABC:

 

Tony Wallace
Tony Wallace.
 

The hollow man

A mysterious illness with few symptoms and no cure is sucking the very life out of Tony Wallace.

By Andrew O’Connor
13 January 2020
© 2020 ABC.

The catastrophic collapse of Tony Wallace’s life began slowly and silently.

An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right.

Over time, his ambiguous symptoms have morphed into a condition that defies medical diagnosis, resists treatment and relentlessly, ruthlessly drains the life out of his body.

 

Full article…

 
 
 

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

South Australian news

Monday 13 January 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…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 13 January 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

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 12 January 2020

 

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 lifesstyle that puts them below the poverty line and is causing immense emotional hardship.

 

Full article…

 
 
 

More In The News


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