Society Logo
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.

Donate Now
   
Become a Member
Word (docx) Application Form
(Interactive Word document, 156KB)
Why become a member?

Facebook
 
 
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: an update on progress at the clinic & links with Open Medicine Foundation and others nationally
Venue: Parkside Baptist Church, 100 Young Street, Parkside

Saturday 7 September 2019
Annual General Meeting
2:00pm
Speaker: Occupational Therapist Andrea Parker
Topic: What happens in vagus: an exploration of vagus nerve stimulation as a potential therapy for ME/CFS and beyond
Venue: Unley Community Centre, 18 Arthur Street, Unley

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 26 August 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…

 
 
 

Channeling Chronic Pain Into Art

International news

Monday 26 August 2019

 

From US news outlet the Herald-Mail Media:

 

Sarah Bigham
Sarah Bigham of Frederick, Md., suffers from chronic pain
and has a complex medical diagnosis. She turned her
medical journey into art using dissolved medications,
supplements and kitchen spices as watercolors. Some of
her artwork is on display at Vesta Pizzeria and
Family Restaurant in Boonsboro until Sept. 30.
 

Channeling chronic pain into art

By Janet Heim
August 25, 2019
© Copyright 2006-2019 GateHouse Media, LLC. All rights reserved.

BOONSBORO — For chronic pain sufferers, the clock means nothing. At night, when most people are sleeping, bodies wracked with pain can be in motion trying to find relief.

That’s the way it is for Sarah Bigham of Frederick, Md., who couldn’t sit or stand and resorted to walking in circles around the house in the dead of night.

As she wandered and cried, Bigham decided to find a different outlet for that awake time. In desperation, Bigham turned to writing as a creative release.

She also dug out the painting supplies from the art class she took while a student at The College of William & Mary and got to work.

From those sleepless nights, Bigham has produced scores of poems, essays and other reflections, some of which she plans to publish in a book. Sixteen of her more than 80 paintings are on display and for sale in the back room at Vesta Pizzeria in Boonsboro through September.

For more than five years, Bigham has been plagued with pain that she describes as a urinary tract infection “with the horrible burning except supercharged 24/7. It’s really hard to explain the level of torture,” Bigham said.

She is grateful to have a supportive primary care physician, Dr. Tyra Kane of Internal Medicine Specialists of Frederick.

Her complex medical condition has resulted in 17 different diagnoses and Kane said there is a unifying diagnosis for all the pain and discomfort, but that cause is still undetermined.

Bigham’s diagnoses range from interstitial cystitis to fibromyalgia/chronic central pain syndrome/central sensitization syndrome to chronic fatigue syndrome and more, all with their own pain.

“It’s like being on a scavenger hunt nobody wanted to be on,” said Bigham, who will be 47 on Sept. 23.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Monday 26 August 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 26 August 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 25 August 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…

 
 
 

Social Media And Chronic Pain: The Good, The Bad, And The Ugly

International news

Sunday 25 August 2019

 

From National Pain Report:

 

Twitter pain
 

Social Media and Chronic Pain: The Good, The Bad, and The Ugly

By
August 23, 2019
Copyright 2019 National Pain Report.

When I was first diagnosed with Fibromyalgia in December 2009, I really didn’t know all that much about it. I had been in some degree of pain for many years, just not anything like this.

Being the research junkie that I am, I turned to the Internet to learn more about my newest challenge.

I was relatively new to Facebook at the time, but I did have one friend who had fibromyalgia and she pointed me in the direction of a support group.

I have never really minced words. I have probably occasionally overshared more than others. I always took the view of “this is who I am, either you like it or you don’t need to be a part of my life.” I found that more of my old friends stayed rather than left.

Of course, there were a few who automatically assumed I was a drug addict just because I was on pain medication.

You’ve met the type. They’re the ones who always say “if you just throw away your pills and go to the gym, your pain will go away and you will be just fine.”

I’ll get right on that.

No amount of reasoning will change their minds.

Believe me, I tried. I told my side. Some listened and stuck around.

Those who were completely convinced they were right were the first to be blocked.

Don’t need them and don’t miss them.

But that was 10 years ago and every single one of them is still out of my life. Realistically I discovered more supportive people than these set-in-their-ways judgmentally stubborn idiots.

Their loss. I’m awesome!

 

Full article…

 
 
 

Petition: Fix The Issues With Accessing The Disability Support Pension

Australian news

Sunday 25 August 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 24 August 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…

 
 
 

Woman In Her 20s Fed Up Of Using Walking Sticks Like Her Grandma's So Created Her Own

International news

Saturday 24 August 2019

 

From Wales Online:

 

Hannah Hopkins
Hannah Hopkins has fibromyalgia and has
decided to design fashionable walking aids.
(Image: Hannah Hopkins)
 

Woman in her 20s fed up of using walking sticks like her grandma's so created her own

Hannah Hopkins, who has fibromyalgia, said her condition was like a phone battery that can drain at any time

By Lydia Stephens Trainee multimedia journalist
21 August 2019
© 2019 Media Wales Ltd.

A woman with fibromyalgia has become so fed up of people treating her differently when they see her "grandma walking stick" she has decided to create her own.

Hannah Hopkins, 29, uses mobility aids such as sticks and walkers to help her cope with the pain and instability she feels because of her condition.

However she said she receives unwarranted requests about her medical history when she uses them so has decided to create her own "upcycled" versions to change the conversation around her disability.

"I feel like my walker says 'Hey, I am disabled,' which puts a lot of people off using them," said Hannah, who lives in Caerphilly.

She said one of the first questions that she gets asked when she meets someone new is "What is wrong with you?" which she thinks is an invasion of her privacy.

"My health is not public property, I don't owe strangers my medical history. You wouldn't walk up to a non-disabled person and say 'have you had any STDs?' It is just not something that you do.

"My disability is not the most interesting thing about me but the minute you have a mobility aid that is all people see."

 

Full article…

 
 
 

Petition: Remove "Afflicted" Docuseries From Netflix Now

International news

Saturday 24 August 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 23 August 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…

 
 
 

GCSE Student Gets Straight 9s Despite Chronic Illnesses

International news

Friday 23 August 2019

 

From Welsh newspaper the North Wales Chronicle:

 

Alicia Daley
Alicia Daley
 

GCSE student gets straight 9s despite chronic illnesses

By Press Association 2019
22nd August 2019
©Copyright 2001-2019.

A student has battled debilitating chronic fatigue syndrome and fibromyalgia to secure nine of the highest GCSE grades.

Alicia Daley, 16, said at one point she thought it would be “impossible” to get the grades she desperately wanted after her diagnosis when she was 13.

Both conditions are long-term illnesses causing extreme tiredness and, in the case of fibromyalgia, chronic and widespread pain.

But the teenager was celebrating with other pupils at King Edward VI High School for Girls in Edgbaston, Birmingham, on Thursday.

Alicia found out she had secured eight 9s – the highest possible grade – and also the top grade in additional maths – a grade A – when she opened her results.

 

Full article…

 
 
 

UK Benefits Cheat 'Too Weak To Walk' Was Running A Brothel And Riding Elephants

International news

Friday 23 August 2019

 

From UK newspaper The Mirror:

 

Natalie Davis
Natalie Davis, 51, claimed she was often
too weak to get out of bed.
(Image: Avon and Somerset Police)
 

Benefits cheat 'too weak to walk' was running a brothel and riding elephants

Natalie Davis claimed she needed a wheelchair but investigators raided her home and found holiday snaps showing her on an African safari and riding an elephant in Asia

By Geoffrey Bennett
22 August 2019
© 2019 MGN Limited.

A benefits cheat was running a brothel and jetting around the world on exotic holidays after falsely claiming she needed a wheelchair to get around.

Natalie Davis told the DWP she was disabled and could only walk a few steps before being overcome by "unbearable" pain.

But the 51-year-old - who fraudulently pocketed £17,000 in benefits - was spotted getting in and out of cars, walking up and down stairs and carrying shopping bags with ease after being put under surveillance.

When investigators raided her home in Weston-super-Mare, Somerset, they found photos showing her riding elephants, climbing mountains, going on a hot air balloon ride and zooming across a zip line, BristolLive reports.

 

Full article…

 
 
 

Team Trudeau Front Benchers Fan Out To Promote Federal Support For Health Research

International news

Friday 23 August 2019

 

From Canada's iPolitics:

 

Ginette Petitpas Taylor
Health Minister Ginette Petitpas Taylor intends to
lower age limit in junk food ads bill.
(Photo: iPolitics/Matthew Usherwood)
 

Team Trudeau front benchers fan out to promote federal support for health research, women entrepreneurs and Yukon conservation efforts

By Kady O'Malley
August 22, 2019
© Copyright 2019 iPolitics. All Rights Reserved.

After spending the last few days making the rounds on her Atlantic Canadian home turf, Health Minister Ginette Petitpas Taylor heads to the Sainte-Justine University Hospital Research Centre in Montreal with a fresh tranche of federal cash to boost research that, according to the advisory, aims to “improve the quality of life of people living with myalgic encephalomyelitis,” which, it notes, was “formerly known as chronic fatigue syndrome.”

 

Full article…

 
 
 

Chronic Illness Manifesto Survey

International news

Friday 23 August 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 22 August 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…

 
 
 

The Wages Of Sin: Fibromyalgia

International news

Thursday 22 August 2019

 

From US newspaper The Independent:

 

The Wages of Sin: Fibromyalgia

By Keith Brown
August 17, 2019
© Copyright 2017 - The Independent.

The viewpoints expressed above are those of the author and do not necessarily reflect those of The Independent.

Keith Brown

The Wages of Sin depicts "Just another day in Hell." Join Satan, his long suffering assistant Jinx, talking skulls, and spiders along with others guests for these little nuggets of chuckles. Whether you love them or hate them, always remember that at the end of the day, It's just a cartoon. Keith Brown lives in Missouri with his wife and 2 1/2 cats.

 

Wages of Sin: Fibromyalgia

 

Full article…

 
 
 

Does Inflammation Harm Your Health?

International news

Thursday 22 August 2019

 

From Nigerian newspaper The Sun:

 

Woman
 

Does inflammation harm your health?

18th August 2019 in Health
© 2019 The Sun Nigeria.

The word “inflammation” traces back to the Latin for “set afire.” In some medical conditions like rheumatoid arthritis, you feel heat, pain, redness, and swelling. But in other cases like heart disease, Alzheimer’s and diabetes, it’s not so obvious. If you didn’t go looking for it with tests, you wouldn’t even know it’s there.

Inflammation actually is good in the short run. It’s part of your immune system’s natural response to heal an injury or fight an infection. It’s supposed to stop after that. But if it becomes a long-lasting habit in your body, that can be bad for you. Long-term or “chronic” inflammation is seen in many diseases and conditions.

...

In rheumatoid arthritis, it does damage 

What many people think of as “arthritis” is osteoarthritis, in which the tissue that cushions joints, called cartilage, breaks down, particularly as people age. Rheumatoid arthritis (RA) is different. In RA, the immune system attacks your body’s joints, causing inflammation that can harm them — and even the heart. Symptoms include pain, stiffness, and red, warm, swollen joints.

Is it part of fibromyalgia?

This condition can cause pain, tenderness, and fatigue. Unlike in RA, inflammation in fibromyalgia doesn’t attack the joints. Recent research suggests, however, that brain inflammation may be associated with fibromyalgia. More research is needed to prove this connection.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Wednesday 21 August 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…

 
 
 

Why This Real-Life Netflix Series Is Getting Sued All Over

International news

Wednesday 21 August 2019

 

From Digital Spy:

 

Afflicted participant
Afflicted participant.
(Image: Netflix)
 

Why this real-life Netflix series is getting sued all over

The streaming giant is under fire.

By Abby Robinson
August 19, 2019
©2019 Hearst UK.

Netflix is no stranger to the courtroom.

The Satanic Temple, for one, took the streaming giant to court claiming that the goat-headed statue representing the Dark Lord in Chilling Adventures of Sabrina was a carbon copy of its own goat icon.

The complaint was "amicably" settled, according to the organisation.

...

But the latest lawsuit to land on the proverbial desk concerns Afflicted, a documentary series released last year. It follows a group of individuals who all suffer from chronic illnesses and are on the hunt for answers to their pain – and, crucially, relief from it.

But some of the subjects at the heart of Afflicted were unsatisfied with the end product and are suing the streaming platform for defamation, fraud and invasion of privacy.

 

Full article…

 
 
 

Donate To SAHMRI

South Australian news

Tuesday 20 August 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…

 
 
 

The Power Of Flowers May Ease Fibromyalgia Symptoms

International news

Tuesday 20 August 2019

 

From Mother Nature Network:

 

Mapping Oxygen
'Mapping Oxygen'
(Photo: Yasmin Crawford/Royal Photographic Society)
 

Brilliant things happen when science and photography collide

By Mary Jo Dilonardo
August 17, 2019
Copyright © 2019 Narrative Content Group. All rights reserved.

...

'Mapping Oxygen'

This was Yasmin Crawford's final project for her masters in photography at Falmouth University. The project focused on discovering the research behind the neuroimmune condition myalgic encephalomyelitis, also known as chronic fatigue syndrome.

"Through exploration of perspective, complexities, and scientific multidisciplinary collaborations, I create imagery that explains, reveals and connects us consciously to the ambiguous and unknown."

 

Full article…

 
 
 

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

Australian news

Tuesday 20 August 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 20 August 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

 
 
 

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 South Australia Inc
www.sacfs.asn.au
Privacy Policy
Email: sacfs@sacfs.asn.au
Site maintained by Peter Scott