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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Support

Eco Pest Control

ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.

BankSA & Staff Charitable Fund

ME/CFS Australia (SA) Inc wishes to thank BankSA & Staff Charitable Fund for its support of Talking Point, the Society’s official journal.

Society Seminars for 2017
Saturday 8 April 2017
1:30pm
(Speaker to be confirmed)

Saturday 24 June 2017
1:30pm
Speaker: Dr Richard Kwiatek

Saturday 26 August 2017
1:30pm
(Speaker to be confirmed)

Saturday 18 November 2017
1:30pm
(Speaker to be confirmed)
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)
(English)

PDF

ME/CFS Guidelines for GPs
(SA Department of Health)
(German)

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
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: PO Box 717, Mawson ACT 2607
Phone: (02) 6290 1984
Fax: (02) 6290 4475
Web: www.mecfscanberra.org.au
Email: mecfsadmin@shout.org.au
NEW SOUTH WALES
ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
QUEENSLAND
ME/CFS/FM Support Association Qld Inc
Address: c/o Mission Department, St. Vincent’s Hospital, Toowoomba Qld 4350
Phone: (07) 4632 8173
Web: www.mecfsfmq.org.au
Email: mefmtba@bigpond.com
Facebook Page
SOUTH AUSTRALIA
ME/CFS Australia (SA) Inc
Postal address: PO Box 28, Hindmarsh SA 5007
Support line: 1300 128 339
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
VICTORIA
TASMANIA
NORTHERN TERRITORY

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

 

Please note: This page reports a wide range of news items about ME/CFS and Fibromyalgia, not all positive or underpinned by science. See our Disclaimer (below left). If you see views that contradict the reality of the illness, please make it known to the writers or publishers of such articles – this will help to spread awareness amongst the general public.

 

Four New Ailments Being Added To Connecticut Medical Marijuana Program

International news

Friday 24 February 2017

 

From US newspaper the Hartford Courant:

 

Connecticut Board of Physicians
The state Board of Physicians met Wednesday to discuss
proposed new conditions that would qualify
for medical marijuana in Connecticut.
 

Four New Ailments Being Added To Medical Marijuana Program

By Gregory B. Hladky
February 23, 2017
Copyright © 2017, Hartford Courant

Proposals to add fibromyalgia, muscular dystrophy, shingles and rheumatoid arthritis to the list of painful ailments that qualify for Connecticut’s medical marijuana program were endorsed by a state agency Thursday.

 

Full article…

 
 
 

South Australian Health And Medical Research Institute (SAHMRI) Calling For Research Participants

South Australian news

Friday 24 February 2017

 

From the South Australian Health and Medical Research Institute (via email):

 

SAHMRI
 

South Australian Health and Medical Research Institute (SAHMRI)

Research participants wanted

Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.

What is Chronic Fatigue Syndrome?

Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.

Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.

If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.

What is the purpose of this study?

To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.

 

Read more…

 
 
 

One Of The Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

International news

Thursday 23 February 2017

 

From ScienceAlert:

 

Woman
(Photo: Deana/Flickr)
 

One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

Chronic fatigue IS a real disease.

By Fiona MacDonald
22 February 2017

Chronic fatigue syndrome (CFS) or Myalgic Encephalomyelitis (ME) is one of the most perplexing conditions out there. It affects up to 1 million Americans and as much as 2.6 percent of the global population, often triggering exhaustion so severe that patients can't work or study.

But for decades, researchers have struggled to find an underlying cause, leading to an assumption by many doctors that it's 'not a real disease'. Now, Australian researchers have blown that myth wide open, showing for the first time that CFS is linked to a faulty cell receptor in immune cells.

"This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known - that it is a 'real' illness - not a psychological issue," said Leeanne Enoch, the Science Minister of Queensland - the Australian state that's supporting the research.

 

Full article…

 
 
 

Death Eater From Harry Potter Films Moves To Eastbourne

International news

Thursday 23 February 2017

 

From UK newspaper the Eastbourne Herald:

 

Jon Campling
Jon Campling
 

Death Eater from Harry Potter films moves to Eastbourne

22 February 2017
© 2017 Johnston Publishing Ltd. All rights reserved.

Watch out on the streets of Eastbourne, and particularly if you’re on a train – a Death Eater has come to town.

Jon Campling made a dramatic appearance in Harry Potter and the Deathly Hallows Part 1 when he stopped the Hogwarts Express with simply a menacing look and hand-raise.

At more than 6ft tall with distinctive features and long, straight hair, it is not hard to see why he was picked for the commanding role, and that of a main character in the major gaming franchise Final Fantasy.

Now he has moved to Eastbourne with his wife, Ali.

...

Last year the actor raised £800 for Invest in ME, a charity that aims to invest in Myalgic Encephalomyelitis (ME) research.

Campling, whose wife has the condition, said, “There hasn’t been enough research into it.

“She was a successful actress, but had to give it up.”

 

Full article…

 
 
 

Gold Coast Researchers Make Chronic Fatigue Syndrome Breakthrough

Australian news

Wednesday 22 February 2017

 

From Griffith University:

 

Dr Sonya Marshall-Gradisnik
Dr Sonya Marshall-Gradisnik
 

Gold Coast researchers make Chronic Fatigue Syndrome breakthrough

By Louise Durack
February 21, 2017

In a world first, Gold Coast researchers have made an important breakthrough in understanding the cause of Chronic Fatigue Syndrome.

Science Minister Leeanne Enoch said researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have found strong evidence that chronic fatigue syndrome was associated with a dysfunctional immune system.

“The research team, led by Professor Sonya Marshall-Gradisnik and Professor Don Staines, have identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Ms Enoch said.

“This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue.”

Full article…

 

From Channel 7 on Facebook:

 

 
 
 

Halstead Resident Bids To Start Support Group After Feeling 'Alone' During Battle With Fibromyalgia

International news

Tuesday 21 February 2017

 

From UK newspaper the Halstead Gazette:

 

Nichola Sparks
Nichola Sparks
 

Halstead resident bids to start support group after feeling 'alone' during battle with fibromyalgia

20 February 2017
©Copyright 2001-2017

A WOMAN with a condition that leaves her exhausted is hoping to kick-start a support group after feeling “alone” during her battle.

Nichola Sparks, of Gardeners Road, Halstead, was diagnosed with fibromyalgia two years ago after a lifetime of feeling muscle pain, fatigue and disturbed sleep.

Nichola wants to start a support group in the area and raise awareness for the condition.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 21 February 2016

 

From The CONVERSATIONS Project (via email):

 

The Conversations Project
 

Consumer Expectations & Experiences of the Health Care System – An International Study

The CONVERSATIONS Project
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

 
 
 

Relief At Last? The Next Generation Of Opioid Drugs, Fibromyalgia And Chronic Pain

International news

Monday 20 February 2017

 

From Health Rising:

 

Drugs and money
Opioid drugs are good at reducing acute pain but that
relief can come at a cost if the drugs continue to be used.
 

Relief at Last? The Next Generation of Opioid Drugs, Fibromyalgia and Chronic Pain

by Cort Johnson
February 10, 2017

Twenty billion dollars a year… That’s how much Americans in chronic pain spend on prescription pain-killers every year. Most of these are opioid drugs, but the increasing regulatory burden foisted on them and the growing realization of how ineffective and even harmful they can be means their days are numbered.

Three non-opioid drugs have been approved for fibromyalgia but studies suggest that they’ve been of limited effectiveness in reducing pain in the overall fibromyalgia population. Surveys suggest that about thirty percent of FM patients take opioids and many consider them more effective than the FDA-approved FM drugs.

Solutions to the chronic pain problem will probably come in many forms, but one of the more intriguing is more effective and safer next-generation opioids. Recently a Smithsonian article, “America’s Long-Overdue Opioid Revolution Is Finally Here”, suggested that if the opioid revolution is not quite here yet, it’s coming fast.

In the early 2000’s researchers realized that opioid receptors were more complex than they had thought. Depending on how they were activated these receptors could turn on two pathways; the “good” pathway – which turned down nerve pain activity – and the “bad” pathway which turned down pain nerve activity but also caused things like respiratory depression, addiction and constipation.

You can guess which pathway virtually all the current crop of opioid pain-killers is using. The finding sparked efforts to create forms of opioid drugs. Currently three drugs are leading the pack, but better ones may be coming as researchers better understand how the opioid receptors work.

 

Full article…

 
 
 

Ampligen Petition

International news

Sunday 19 February 2017

 

From ME Action:

 

ME Action
 

Sign the petition to protect the Ampligen clinical trial.

17 February 2017
Copyright © 2017 #MEAction, All rights reserved.

Dear friends,

The clinical trial for Ampligen in the U.S. is facing some harmful changes to its criteria by the pharmaceutical company - changes that are hurting the patients enrolled and undermining the success of the trial.

The clinical trial for Ampligen is our first shot in the U.S. towards an FDA-approved medication for people with ME.

Changes include:

  • A 167% price increase for the drug.
     
  • Ending the compassionate care program, which supports less than a handful of patients who need the assistance.
       
  • Closing the trial to new participants.

Activists have met with executives at Hemispherx to express their concerns about the changes to no avail. Now they are circulating a petition to show Hemispherx that the ME community is serious about protecting the Ampligen trial.

Let's show our solidarity in numbers.

Sign the Petition

 
 
 

The Invisible Disease: Fibromyalgia Sufferers Speak Out

International news

Saturday 18 February 2017

 

From West Australian newspaper the Mandurah Mail:

 

Mandurah Mail
 

The invisible disease: Fibromyalgia sufferers speak out

By Cam Findlay
16 Feb 2017

It is a disease that more and more Australians are being diagnosed with every year. It’s incredibly debilitating: sufferers often can’t leave bed, go to work or have normal social lives. But it’s also invisible: it's a disease that strikes at the core of victim’s bodies, at the joints and nerves, resulting in often crippling pain. Fibromyalgia is affecting a large swathe of Australians, but community activism is making a positive dent in this relatively unknown disease.

Michelle Greenwood was diagnosed with Fibromyalgia Syndrome – called Fibro in the disease’s support community – eight years ago, an event that lead her to the path she’s on now.

 

Full article…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 11 February 2017

 

From the University of South Australia (via email):

 

Gaming
 

Participants sought for pacing study

Are you 18-65 years old and have been diagnosed by a GP or medical practitioner as having ME/CFS and do not currently play active video games?

If so, you may be eligible to participate in our study titled: 'Pacing to increase physical activity for adults with ME/CFS: Are active video games a feasible and acceptable strategy?'

Pacing is commonly used by people with ME/CFS to manage their available energy and achieve daily activities while avoiding flare-ups. Pacing can also be used to slowly increase physical activity levels – but very little research has investigated this approach. Recently, the rise of active video gaming has also provided an option for people experiencing barriers to physical activity participation – but there is no information whether this is feasible or acceptable for people living with ME/CFS. Understanding the links between physical activity and inflammatory pathways in the body may help us to understand the mechanism behind ME/CFS.

The pilot study involves pacing to manage symptoms, and gradual attempts to increase physical activity by replacing other physically passive activities using conventional activity (such as resistance exercise or walking) or active gaming (Xbox Kinect either sitting/reclining or standing) over a 6 month period. Heart rate monitoring is integral to the study and will be used to assess the safety of activity levels. At the end of the intervention, participants will be able to keep an active gaming console as compensation for their time.

The study protocol has been developed by extensive consultation with the ME/CFS community and a Stakeholder Advisory Group made up of medical specialist, support group representatives and people living with ME/CFS. The study has been approved by the UniSA Human Research Ethics Committee.

If you are interested in this study or would like further information, please contact Daniel Clark from the University of South Australia (email Daniel.Clark@unisa.edu.au) or the UniSA Clinical Trials Facility (ph. [08] 8302 1365). People who cannot tolerate more than 5 minutes of moving images (e.g. TV) should not apply.

We look forward to hearing from you.

Kind regards,

Daniel Clark
Accredited Exercise Physiologist
Research Assistant
University of South Australia

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