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ME/CFS Australia Ltd
Please click here to donate to the society ME/CFS South Australia Inc
 
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 2019
Saturday 23 March 2019
1:30pm
Speaker:
Mark Van Ness (via YouTube)
Topic: Pacing
Venue: SACOSS, 47 King William Rd, Unley
Related videos:
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 1 (of 2)
Dr. Mark Van Ness, "Expanding Physical Capability in ME/CFS" Part 2 (of 2)

Saturday 22 June 2019
1:30pm
Speaker: Dr. Bruce Wauchope
Topic: Where we are at
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 7 September 2019
Annual General Meeting
1:30pm
Speaker: Occupational Therapist Andrea Parker
Topic: From Clinician to Client: An Occupational Therapist's Journey With ME/CFS
Venue: Sophia House, 225 Cross Road, Cumberland Park

Saturday 23 November 2019
1:30pm
Speaker: Mike Musker from SAHMRI (SA Health & Medical Research Institute)
Topic: [to be confirmed]
Venue: Sophia House, 225 Cross Road, Cumberland Park
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 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

Monday 27 May 2019

 

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…

 
 
 

UK Teen To Play At Fortnite World Cup - Where Winner Takes Home $3 Million

International news

Monday 27 May 2019

 

From UK news outlet NottinghamshireLive:

 

Jake Smith in action
Jake Smith in action.
 

Mansfield teen to play at Fortnite World Cup - where winner takes home $3 million

Jake Smith has been a professional gamer for around two years

By Oliver Pridmore
26 May 2019
© 2019 Local World.

A Mansfield teenager could win up to $3m when he competes in a video game tournament this summer in New York City.

Jake Smith, 18, will be one of 100 players vying for the top prize at the Fortnite World Cup in July - where even coming dead last nets you $50,000.

The tournament centres around the online video game Fortnite, first released in 2017, where players compete to survive in a virtual world.

Jake first came across the game when he had to take a year out of school after being diagnosed with chronic fatigue syndrome.

He said: "I was really ill at school and when I was doing my GCSEs I had to do them at home.

"So when I started in the sixth-form I had to take a gap year. That was at the same time Fortnite came out so it became really easy to get into and make friends and I was getting better and better at playing it."

 

Full article…

 
 
 

UK Therapists Launch New Treatment Programme For People With Fibromyalgia

International news

Monday 27 May 2019

 

From UK newspaper Spalding Today:

 

Vic Paterson and Greg Pritchard
Vic Paterson and Greg Pritchard.
 

Spalding therapists launch new treatment programme for people with fibromyalgia.

By Jeremy Ransome - jeremy.ransome@iliffepublishing.co.uk
26 May 2019
© 2019 - Iliffe Media Publishing Ltd. All rights reserved.

Soft tissue therapists in Spalding are launching a treatment programme specifically designed to help people with fibromyalgia.

Vic Paterson and Greg Pritchard, who run State 11 Soft Tissue Therapy, were inspired to devise the five-week programme - which launches later this month - after seeing so many clients seeking help for issues related to chronic pain.

“We see a lot of clients with chronic pain, and although it would be wrong to say there isn’t any help available to them on the NHS, GPs don’t always have time to keep up to date with all the latest research on matters like fibromyalgia which is a complex one and continually being updated,” said Vic.

 

Full article…

 
 
 

Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Monday 27 May 2019

 

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 27 May 2019

 

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 South Australia Inc Co-Signs International Open Letter

South Australian news

Monday 27 May 2019

 

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…

 
 
 

Donate To SAHMRI

South Australian news

Sunday 26 May 2019

 

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…

 
 
 

New Study Finds Missing Link In Fibromyalgia Treatment

International news

Sunday 26 May 2019

 

From Care2:

 

Woman
 

New Study Finds Missing Link in Fibromyalgia Treatment

By Michelle Schoffro Cook
About Michelle
May 24, 2019
Copyright © 2019 Care2.com, inc. and its licensors. All rights reserved.

Many fibromyalgia sufferers live with chronic pain, fatigue and other difficult symptoms that affect their ability to perform everyday tasks. Few have any clear indicator as to the cause of their health condition, or worse, how to cure it, or at least alleviate symptoms. Knowing so little about the syndrome, the medical community has had little to offer most fibromyalgia sufferers, perhaps until now. That’s because exciting new research may shed a light on a major causal factor for the syndrome, which may help to focus attention on what will improve symptoms.

A new study published in the online medical journal PLoS One found that insulin resistance may be behind fibromyalgia. The researchers found that fibromyalgia was linked to insulin resistance, which is defined as a reduced ability by the cells to respond to the action of insulin in transporting sugar from the bloodstream into the muscles and tissues. Insulin resistance usually develops with excessive weight or obesity, as well as precludes diabetes.

The scientists found that when they regulated blood sugar levels, they were also able to treat fibromyalgia-related pain, suggesting the key to controlling symptoms, but perhaps also the overall condition, is to regulate blood sugar levels and address insulin resistance.

 

Full article…

 
 
 

Free Book Hidden Stories To Help People With Hidden Health Conditions

International news

Sunday 26 May 2019

 

From UK newspaper the Swindon Advertiser:

 

Hidden Stories
 

Free book Hidden Stories to help people with hidden health conditions

20 May 2019
©Copyright 2001-2019.

THE loneliness and stigma experienced by millions living with an invisible health condition will be put in the spotlight at Swindon Library.

Root Experience is publishing [Hidden Stories,] a powerful novel about what life is like for those with conditions ranging from anxiety to autism and diabetes to chronic fatigue syndrome – all of which have symptoms that are not easily identifiable to others.

The Brighton-based arts charity aims to inspire more people to speak out, while also encouraging others to listen compassionately and is giving away all 8,000 printed copies at eight free events across the south of the country.

Hidden Stories On Tour will be at Swindon Library on Saturday, June 8, from 10am-3pm, where visitors will be able to collect free copies of the book, meet some of the contributors, join in conversations and find out more about the project.

There will also be a photography exhibition by Sarah Hickson and interactive games that guide self-exploration.

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 26 May 2019

 

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…

 
 
 

Donate To SAHMRI

South Australian news

Saturday 25 May 2019

 

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…

 
 
 

Solve ME/CFS Initiative: Your Advocacy In Action – ME/CFS Senate Resolution Passed!

International news

Saturday 25 May 2019

 

From the Solve ME/CFS Initiative:

 

Solve ME/CFS Initiative
 

Your Advocacy in Action: ME/CFS Senate Resolution Passed!

Your ME/CFS Advocacy Week efforts made a difference! The Senate Resolution in support of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day is now the official stance of the U.S. Senate and the U.S. House introduced a matching resolution (H. Res 399) this week.

For ME/CFS Advocacy week (April 1 – April 7,2019), Solve M.E., led a nationwide effort to raise awareness, advocate for increased federal funding, and tell the stories of people with ME/CFS. Our 3rd Annual ME/CFS Advocacy Day in Washington DC, in partnership with #MEAction, drew over 240 registered ME/CFS advocates to attend 185 meetings (23 of them member-level!) with members of Congress and their staff.

Thanks to the combined efforts of our community, the US Senate has taken a stand for ME/CFS! This action was a joint partnership between Solve M.E., #MEAction, and the Massachusetts ME/CFS&FM Association.

 

 

Full article…

 
 
 

Blamed For Wasting Doctors' Time, Branded Attention-Seekers And Told Their Ailment Doesn't Even Exist

International news

Saturday 25 May 2019

 

From Daily Mail Australia:

 

Jennifer Chittick
Before being struck down by ME, Jennifer Chittick was
out-going, hard-working and excited about her future
as a primary school teacher (pictured at her graduation).
 

Blamed for wasting doctors' time, branded attention-seekers and told their ailment doesn't even exist: Three ME patients reveal the accusations they have endured during their battle with the crippling condition

By Stephen Matthews Health Editor for MailOnline and Sam Blanchard Senior Health Reporter for MailOnline
23 May 2019
© dmg media

  • It's a controversial condition that has been swept under the carpet for decades
  • But myalgic encephalomyelitis (ME) is physical - and is not made up by patients
  • Millions of lives across the world are being ruined by the unrelenting condition
  • Sufferers are often left house-bound, confined to their beds unable to move far
  • MailOnline has spoken to three long-standing sufferers about their daily ordeals

It's a controversial condition that has been swept under the carpet for decades amid claims that it is merely psychological.

Instead, the now-proven truth is myalgic encephalomyelitis (ME) is physical - and not just made up by mentally-ill patients.

Millions of lives around the world are being destroyed by the unrelenting condition, also known as chronic fatigue syndrome (CFS).

Sufferers are often left house-bound, confined to their beds, reliant on feeding tubes and even needing help to get them in the shower.

But, despite evidence proving it is real coming to the forefront, ME remains incurable and dozens of people wrongly think it is just 'laziness'.

In the hope of ending ignorance surrounding the crippling ailment, MailOnline has heard from three long-standing sufferers.

Heartbreakingly, they revealed how doctors have blamed them for wasting their time, branded them attention-seekers and told their condition doesn't exist.

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 25 May 2019

 

From ME Action:

 

Stop #Afflicted!
 

To: Netflix Executives: Ted Sarandos, Lisa Nishimura, Brandon Riegg, and Vernā Myers

Remove "Afflicted" Docuseries from Netflix Now

Campaign created by Benjamin HsuBorger

PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

----------

We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.

We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people.

 

Full petition…

 
 
 

Donate To SAHMRI

South Australian news

Friday 24 May 2019

 

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…

 
 
 

Victims Rally Outside US State Capitol: 'Don't Punish Me For My Pain'

International news

Friday 24 May 2019

 

From US TV news station CBS 6:

 

Sue Walker with the Richmond Fibromyalgia and Chronic Pain Association
Sue Walker with the Richmond
Fibromyalgia and Chronic Pain Association
.
 

Victims rally outside State Capitol: ‘Don’t punish me for my pain’

By 
May 23, 2019
Copyright © 2019, WTVR.

RICHMOND, Va. -- Over a dozen people rallied on the steps of the Virginia State Capitol Wednesday to protest what they said are the unintended consequences of the crackdown of the opioid epidemic.

The rally-goers were either sufferers of, or knew someone who suffered from, chronic pain.

“I've been in chronic pain for at least 20 years,” said one woman, who identified herself as Denise.

“My husband has the misfortune of being a very severe, intractable pain patient,” said Kristen Ogden.

 

 

Full article…

 
 
 

Understanding The Reality Of Chronic Fatigue

International news

Friday 24 May 2019

 

From Irish newspaper the Limerick Post:

 

Dr Ros Vallings
Dr Ros Vallings who will give a public talk on ME
at the South Court Hotel on May 20.
 

Understanding the reality of chronic fatigue

By Staff Reporter
May 20, 2019
© 2019 Limerick Post Newspaper. All rights reserved.

“I SAID ‘you can do this; you can fight it’. But, unfortunately, you can’t. It disciplines the strongest of people.”

For Sarah Warde, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has overshadowed most aspects of her life for the past 18 years.

The mother-of-one from Dooradoyle was perfectly healthy and working full time until she got a severe chest infection in 2001. The infection travelled to her lungs causing a serious case of pneumonia.

After the illness abated, she found that she wasn’t feeling as strong as usual. She was diagnosed with post-viral fatigue and was no longer able to work.

She never fully recovered and was eventually diagnosed with ME/CFS.

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 24 May 2019

 

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…

 
 
 

Donate To SAHMRI

South Australian news

Thursday 23 May 2019

 

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…

 
 
 

Louisa's Fight For NDIS Chronic Fatigue Syndrome Support

South Australian news

Thursday 23 May 2019

 

From South Australian newspaper The Advertiser:

 

Louisa Stocco
Louisa Stocco.
(Picture: Dean Martin)
 

Louisa’s fight for NDIS Chronic Fatigue Syndrome support

By Dixie Sulda, The Advertiser
May 22, 2019
News Pty Ltd Copyright © 2019.

Louisa Stocco is almost too exhausted to fight her own battle.

The 21-year-old was diagnosed with Chronic Fatigue Syndrome (CFS) three years ago, after she collapsed from exhaustion while touring with a performing arts company.

Since then, her physical and mental fatigue has stopped her being able to work or study to gain her independence.

And with CFS not on the list of recognised conditions for the NDIS, Ms Stocco receives no financial government support and the role of carer is left to her parents.

“My parents have had to cut down work hours to look after me,” Ms Stocco, of Torrens Park, said.

 

Full article…

 
 
 

Washington Woman Seeks To Change Narrative On Disease

International news

Thursday 23 May 2019

 

From US news outlet The Washington Daily News:

 

Colleen Steckel
ON DISPLAY: In the entryway to Brown Library, a display
dedicated to Myalgic Encephalomyelitis offers visitors
a chance to learn about a sometimes-misunderstood
condition. Colleen Steckel, pictured, lives with ME
and has made it her mission to grow public awareness
and provide support for those suffering from the disease.
 

Washington woman seeks to change narrative on disease

By Matt Debnam
May 21, 2019
© 2019, Washington Daily News.

For Colleen Steckel, energy is a precious commodity. She’s one of an estimated 1 million people in the United States who suffer from Myalgic Encephalomyelitis, an often misunderstood and sometimes misdiagnosed neuro-immune disease that can have devastating impacts on the body.

ME, for short, is a neuro-immune disease that impacts the body in multiple ways — persistent fatigue, heart problems, sleep dysfunction and a weakened immune system are some of the symptoms Steckel and others suffering from the disease face regularly.

This month marks ME Awareness Month, and Steckel is doing her part to raise awareness of, and dispel misconceptions surrounding, the disease.

 

Full article…

 
 
 

Skylight ME/CFS Mental Health & Wellbeing Group

South Australian news

Thursday 23 May 2019

 

From Skylight (via ME/CFS South Australia):

 

Skylight ME/CFS Mental Health & Wellbeing Group...

Tuesday 7 May 2019

Skylight is supporting those with ME/CFS by providing an opportunity to meet together over 6 weeks.

All details are in the flyer below or click on the image to go to the event web page.

For anyone who can't attend, Skylight can still support you. Call them on 8378 4100 to discuss your needs.

 

Skylight ME/CFS Mental Health & Wellbeing Group

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 22 May 2019

 

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…

 
 
 

Antiviral Or Antiretroviral Drugs For Fibromyalgia?

International news

Tuesday 21 May 2019

 

From U.S. News & World Report:

 

Tablets
 

Antiviral or Antiretroviral Drugs for Fibromyalgia?

Exercise and self-care are still the frontline treatments for this chronic pain condition.

By Elaine K. Howley, Contributor
May 20, 2019
Copyright 2019 © U.S. News & World Report L.P.

LIVING WITH CHRONIC pain is no picnic, and for the 2% to 4% of Americans – some 6 to 12 million people – that the American Chronic Pain Association estimates are living with fibromyalgia, widespread pain is a daily reality.

Fibromyalgia is a disorder of how the brain processes pain signals that causes symptoms such as fatigue, insomnia, digestive problems, migraines and cognitive issues, and it can be challenging to diagnose and treat. But there are some approaches and medications that have been proven useful.

What Are Antiviral and Antiretroviral Drugs?

Most of the time, when you get sick from a virus, there’s not a lot the doctor can do for you. Whereas antibiotics can be useful in treating bacterial infections, there aren’t as many options for treating infections caused by viruses. Common viruses cause the flu, measles, polio, rabies and other diseases, and some of these conditions have vaccines that can prevent you from contracting those diseases at all. Retroviruses are another type of virus that work a little differently from other viruses, and the humanimmunodeficiency virus that causes AIDS is an example of a retrovirus.

A relatively new group of drugs has been developed to combat these viral infections. Called antiviral or antiretroviral drugs, these medications can be used to treat diseases caused by certain viruses and retroviruses, and it’s been suggested that perhaps there’s a role for some of these medications in treating fibromyalgia, too.

 

Full article…

 
 
 

Radiation Model For Chronic Fatigue Syndrome Announced By The National CFIDS Foundation

International news

Tuesday 21 May 2019

 

From PRNewswire:

 

Radiation symbol
 

Radiation Model for Chronic Fatigue Syndrome Announced by the National CFIDS Foundation

News provided by
National CFIDS Foundation
May 20, 2019
Copyright © 2019 PR Newswire Association LLC. All Rights Reserved. A Cision company.

NEEDHAM, Mass., May 20, 2019 /PRNewswire/ --The National CFIDS Foundation, of Needham, Massachusetts, has provided details regarding its radiation model for Chronic Fatigue Syndrome, a disease that affects millions in the United States. According to Alan Cocchetto, Medical Director for the National CFIDS Foundation, "Our latest model has now identified two key compounds, known as hydroperoxides, that appear to result from cellular injury due to radiation exposure. We believe this finding is of critical importance to the disease process that is present in our patients."

The National CFIDS Foundation identified cardiolipin hydroperoxides as the first key target that acts to disrupt proper functioning of the mitochondria, the energy factory within the cell. The second target, phosphatidylserine hydroperoxides, acts to disrupt red blood cell function resulting in altered tissue oxygenation. Basically, these two hydroperoxides act in concert as cellular toxicants to adversely affect normal cell function.

According to Gail Kansky, National CFIDS Foundation President, "As I understand it, these compounds make for the perfect storm from a disease standpoint since they adversely affect the ability of the body to function properly at many levels. We believe this to be a major tipping point in our understanding of this disease and I truly expect this to have a significant impact on our patients with regards to diagnostic testing and future therapies that will result from these efforts. As such, we are very pleased to be moving full steam ahead on this with our research groups."

 

Full article…

 
 
 

South Australian Fibromyalgia Research – Healthy Volunteers Wanted

South Australian news

Wednesday 22 May 2019

 

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…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 21 May 2019

 

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…

 
 
 

17 'Harmless' Comments That Hurt People With Chronic Fatigue

International news

Tuesday 21 May 2019

 

From The Mighty:

 

17 'Harmless' Comments That Hurt People With Chronic Fatigue
 

17 'Harmless' Comments That Hurt People With Chronic Fatigue

By Veronica Vivona
May 19, 2019
© 2019 Mighty Proud Media, Inc. All Rights Reserved.

If your chronic illness causes you to have chronic fatigue, you might sometimes find it difficult to be heard and understood by others. You might mention your chronic fatigue to a friend or family member, only for them to respond back by saying, “I’m tired a lot like you too.” Or if you tell someone about what’s going on, they might suggest a lifestyle change that’s meant to help you, but comes off as a quick judgement instead.

Chronic fatigue is the feeling of constant tiredness and exhaustion that’s often debilitating. It can be a common symptom of a variety of chronic illnesses, including fibromyalgia and lupus. Chronic fatigue is not to be confused though with chronic fatigue syndrome/myalgic encephalomyelitis. Though it has a similar name, chronic fatigue syndrome is a chronic illness with its own variety of symptoms while chronic fatigue can occur as part of a number of chronic illnesses.

A lot of the time, well-meaning friends and family members don’t even realize their comments about chronic fatigue can come off as harsh rather than kind. That’s why we asked our Mighty community what “harmless” comments actually hurt people who live with chronic fatigue. While the loved ones in your life might think they are helping or just offering insight, the small comments they make can have a negative impact. Hopefully this list can offer your loved ones some insight on how their words can affect someone who has chronic fatigue.

 

Full article…

 
 
 

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

Australian news

Tuesday 21 May 2019

 

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)

 
 
 

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

South Australian news

Tuesday 21 May 2019

 

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

 
 
 

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