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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:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-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 the various research projects, diets, medications, therapies 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 2016
Saturday 20 February 2016
1:30pm
Topic: Dr Katia Ferrar and Ms Minh Pham from the University of South Australia will discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”, which relates to determining parameters for ME/CFS activity incapacity, and how this will help to develop treatment options.

Saturday 9 April 2016
1:30pm
A screening of the ME/CFS documentary, Forgotten Plague.

Saturday 25 June 2016
1:30pm

Saturday 27 August 2016
1:30pm

Saturday 19 November 2016
Annual General Meeting
1:30pm
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 – Adult & Paediatric:
International Consensus Primer for Medical Practitioners
(2012)
(PDF, 1.49 MB)

PDF

ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners
– An Overview of the Canadian Consensus Document
(2005)
(PDF, 1 MB)

  Note: See here for an overview on the Canadian Consensus Criteria for Fibromyalgia (PDF, 1.70 MB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(English) (PDF, 460 KB)

PDF

ME/CFS Guidelines for GPs
(South Australian Department of Health)
(German) (PDF, 186 KB)

PDF

For Psychiatrists (in English):
CFS: Assessment and Treatment of Patients with ME/CFS – Clinical Guidelines for Psychiatrists
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 460 KB)

PDF

For Psychiatrists (in German):
Chronic Fatigue Syndrom: Diagnose und Behandlung von Patienten mit ME/CFS – Klinische Leitlinien für Psychiater
(Eleanor Stein MD FRCP[C], 2005)
(PDF, 313 KB)

 
Australian ME/CFS Societies
NATIONAL
ME/CFS Australia Ltd
Address: PO Box 7100 Dandenong VIC 3175
Phone: (03) 9793 4500
Fax: (03) 9793 1866
Web: www.mecfs.org.au
Email: ceo@mecfs.org.au
AUSTRALIAN CAPITAL TERRITORY
ACT ME/CFS Society, Inc
Address: c/o SHOUT, 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 Society of NSW Inc
Postal address: PO Box 5403, West Chatswood NSW 1515
Office address: Suite 204, 10 Help Street, Chatswood NSW 2067
Phone: (02) 8006 7448
Web: www.me-cfs.org.au
Email: admin@me-cfs.org.au
NEW SOUTH WALES
The ME/CFS & FM Association NSW
Web: www.mecfsnsw.org
Facebook: ME/CFS & FM NSW Support Group
Facebook: Chronic Fatigue Syndrome NSW
NORTHERN TERRITORY
ME/CFS Australia (Northern Territory)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-nt.org.au
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
Address: 266 Port Road, Hindmarsh SA 5007
Phone: (08) 8346 3237 ('834 MECFS')
Support line: (08) 8346 3237 or 1300 128 339 for country callers
Web: www.sacfs.asn.au
Email: sacfs@sacfs.asn.au
TASMANIA
ME/CFS Australia (Tasmania)
Address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-tas.org.au
VICTORIA
ME/CFS Australia (Victoria)
Office address: 2/240 Chapel Street, Prahran, VIC, 3181
Postal address: PO Box 120, Prahran, VIC 3181
Reception: (03) 9529 1344
Support Line: (03) 9529 1600
Web: www.mecfs-vic.org.au
Email: admin@mecfs-vic.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

PDF

List of Australian ME/CFS organisations
(PDF, 19 KB)

Word

List of Australian ME/CFS organisations (Word, 41 KB)

 

 

Progressive Brain Changes In Patients With Chronic Fatigue Syndrome: A Longitudinal MRI Study

Australian news

Saturday 30 April 2016

 

From the Journal of Magnetic Resonance Imaging (via Wiley Online Library):

Brain
 

Progressive brain changes in patients with chronic fatigue syndrome: A longitudinal MRI study

Zack Y. Shan PhD
Richard Kwiatek MBBS
Richard Burnet MBBS
Peter Del Fante MBBS
Donald R. Staines MBBS
Sonya M. Marshall-Gradisnik PhD
Leighton R. Barnden PhD

First published: 28 April 2016
DOI: 10.1002/jmri.25283
Cited by: 0 articles
Funded by: Judith Jane Mason Foundation

Abstract

Purpose

To examine progressive brain changes associated with chronic fatigue syndrome (CFS).

Materials and Methods

We investigated progressive brain changes with longitudinal MRI in 15 CFS and 10 normal controls (NCs) scanned twice 6 years apart on the same 1.5 Tesla (T) scanner. MR images yielded gray matter (GM) volumes, white matter (WM) volumes, and T1- and T2-weighted signal intensities (T1w and T2w). Each participant was characterized with Bell disability scores, and somatic and neurological symptom scores. We tested for differences in longitudinal changes between CFS and NC groups, inter group differences between pooled CFS and pooled NC populations, and correlations between MRI and symptom scores using voxel based morphometry. The analysis methodologies were first optimized using simulated atrophy.

Results

We found a significant decrease in WM volumes in the left inferior fronto-occipital fasciculus (IFOF) in CFS while in NCs it was unchanged (family wise error adjusted cluster level P value, PFWE < 0.05). This longitudinal finding was consolidated by the group comparisons which detected significantly decreased regional WM volumes in adjacent regions (PFWE < 0.05) and decreased GM and blood volumes in contralateral regions (PFWE< 0.05). Moreover, the regional GM and WM volumes and T2w in those areas showed significant correlations with CFS symptom scores (PFWE < 0.05).

Conclusion

The results suggested that CFS is associated with IFOF WM deficits which continue to deteriorate at an abnormal rate. J. Magn. Reson. Imaging 2016.

PDF Download PDF (519 KB)

Read more…

 
 
 

DiseaseMaps: Put Yourself On The Map!

International news

Friday 29 April 2016

 

DiseaseMaps
 

We have put ME/CFS Australia (SA) Inc. on this world map of disease prevalence and would love you to join us in this endeavour to help spread the word and assist the push for more research funding. Every head adds more weight!

Mark Camenzind (PhD, Research & Development Advocate to Cure ME and father of a son with ME) is leading an international drive to put a million ME/CFS people, organisations, doctors and friends on the map (10 days ago <1000 – now over 1800 people with ME/CFS listed).

He suggests that you get onto map (with pseudonym or just first name), near your home but not exactly, preferably with the option “able to contact”. For many around the world, this will help to organise regionally, so people can meet to share or advocate, coordinated with #MEAction for May 12th and May 25th, #MillionsMissing global campaign in various cities (Washington DC, San Francisco, Seattle, London, etc.). You can also encourage your doctors, family, friends and other ME organisations to add their names.

It’s very simple to do: Just find “Chronic Fatigue Syndrome/M.E.”, have a look at the current map, then click on “Join the map” button, top right. The rest is quick and easy. You can add as much or as little to your profile as you like, choose to have your age shown, whether to allow others to contact you, etc.

If you have Fibromyalgia then add this too.

www.DiseaseMaps.org

Read more…

 
 
 

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

South Australian news

Friday 29 April 2016

 

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…

 
 
 

Fibromyalgia Pain Levels Can Be Predicted By Leptin, Study

International news

Thursday 28 April 2016

 

From Bel Marra Health:

Leptin
 

Fibromyalgia pain levels can be predicted by leptin, study

By Devon Andre
Tuesday, April 26, 2016

Fibromyalgia pain levels can be predicted by leptin, according to research. Fibromyalgia is a condition with many diverse symptoms, the most common being widespread pain. Associated differing biological variables include elevated sedimentation rate (ESR), cytokine profile, and hormone levels. Diagnosing fibromyalgia is a challenge as there are no known biomarkers a patient can be tested for. For the study, researchers used the Vectra®DA, a multi-biomarker disease activity score, to measure serum biomarkers in patients with fibromyalgia and elevated inflammatory markers.

This cross-sectional study involved 33 patients from Los Angeles County. Patients displayed high results on the Vectra®DA, with mean score of 46.5 (range 30 to 84, or moderate to high activity). The serum concentrations of 12 biomarkers – with the exception of leptin – were found to be similar to those with rheumatoid arthritis. Forty-five percent of fibromyalgia patients had higher leptin levels.

The researchers found that the protein leptin plays an important pro-inflammatory and immunomodulatory role in the disease development in a clinical subgroup of fibromyalgia patients with elevated leptin levels. A better understanding of the leptin participation in the pathogenic processes of fibromyalgia may help diagnose the condition and offer better treatments.

Read more…

 
 
 

Avindra Nath Digs Deeper Into Big NIH ME/CFS Study: Warns Of Push Back

International news

Wednesday 27 April 2016

 

From Health Rising:

Avindra Nath
Nath said he was thrilled to be working on ME/CFS
 

Nath Digs Deeper Into Big NIH ME/CFS Study: Warns of Push Back

By Cort Johnson
Apr 24, 2016

The Solve ME/CFS Initiative’s webinar [see below] with Avindra Nath revealed again what an extraordinary study the NIH intramural study at its Clinical Center is.  The Webinar started off with Dr. Nath stating that it was “such a pleasure” to talk to the chronic fatigue syndrome community, and that he was “absolutely thrilled” to be leading the study.

His interest in ME/CFS derives from the patients he’s seen over the years (he’s an MD) as well as patients he’s seen in the multiple sclerosis clinic. Fatigue, he noted, is the most disabling part of MS. Given the immune nature of that illness as well as the effects MS drugs can have on fatigue, he thought it was likely there was an immune basis to ME/CFS. (He also mentioned the Rituximab studies).

On that note be sure to check out, if you haven’t, one ME/CFS patient’s rather amazing response to an MS drug: A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug – What Does It Mean?

Note that this is Nath’s study. He’s the one Collins came to and he’s the one putting the study together. Because he’s a neuroimmune infectious specialist the study is heavy on nervous system and immune studies but because he also studied the literature (and talked to a lot of people) there are also exercise, autonomic nervous system and other components.

Given Nath’s background it’s no surprise that the study focuses on people with infectious onset. He believes an infection triggered the immune system to whack the brains of ME/CFS patients.

Nath didn’t put together just a study, though; he put together a three phase series of studies that he hopes will end up in treatments for ME/CFS. In its duration and scope the NIH study resembles the Open Medicine Foundation’s End ME/CFS project.

Both first deeply examine a limited number of patients, then test their results in a larger number of patients, and finally both envision finding/developing immunomodulatory or other treatments based on those results.

Both, furthermore, are employing top researchers and cutting-edge equipment at two of the top research centers in the world. Nath repeatedly pointed out in his presentation that several of the techniques being used were developed by the researchers who are actually participating in the study. Ron Davis’s lab at Stanford has developed many new technologies over time. During the course of his interest in ME/CFS he’s created a new, more accurate (and cheaper) way to study HLA genes.

The Webinar:

Read more…

 
 
 

Undies On The Outside

International news

Tuesday 26 April 2016

 

From Undies On The Outside:

Undies On The Outside
 

Undies On The Outside

WHY UNDIES ON THE OUTSIDE?

  • Because superheroes wear their undies on the outside, and you have to be a superhero to live with this disease!
     
  • Wearing underwear on the outside symbolizes bringing an invisible illness, which is usually hidden away, out into the open.

 

WHERE DOES THE MONEY GO?

All the funds raised from the Undies on the Outside Challenge go to the Open Medicine Foundation’s End ME/CFS Project.

 

DOES ALL THE MONEY GO TO CHARITY?

Yes! All the funds raised from the Undies on the Outside Challenge go to the Open Medicine Foundation’s End ME/CFS Project.

The Undies on the Outside team and all third party contributors such as photographers, models, graphic designers, video editors and public relations profesionals, have donated their time on a pro-bono basis, and any out-of-pocket costs been covered by the team personally, or by those who’ve also donated their time.

We have not deducted any admin fees or expenses.

 

HOW DO I DO THE CHALLENGE?

It's easy! Take your photo, make your donation, post the photo to social media and cut & paste the following wording. Don't forget to nominate 3 people!

I’m a Superhero and wearing my undies on the outside to end ME/CFS! I nominate X, Y and Z to do the ‪#UndiesChallenge

 

HOW DO I DO THE CHALLENGE? (post your photo then copy & paste these instructions)

  1. Take a photo or video wearing your undies on the outside
  2. Donate $10 (USD) to the Open Medicine Foundation's End ME/CFS Project at bit.ly/UOTO1
  3. Share the photo / video on social media using the hashtag #UndiesChallenge [on Twitter or Facebook]
  4. Tag 3 other people. They have 24 hours!

 

LOOKING FOR INSPIRATION?

And if you're looking for inspiration, or would like to share your own challenge photos, visit us on Facebook or Twitter.

Read more…

 
 
 

Anorexia May Be Caused By Bacterial Infection, Say Scientists

International news

Monday 25 April 2016

 

From UK newspaper The Telegraph's Science section:

Woman with eyes closed
Researchers say it 'stretches credibility' to think that
anorexia is a purely psychosocial disorder
(Credit: Alamy)
 

Anorexia may be caused by bacterial infection, say scientists

By Sarah Knapton, Science Editor
24 April 2016

Anorexia may be caused by bacteria which confuse the immune system, leading it to attack the brain and trigger feelings of personal disgust, scientists have suggested.

The theory is the first time that the eating disorder has been linked to a physical infection, in contrast to the traditional view which blames psychological, environmental and social factors.

Experts from Lancaster University and Morecambe Bay NHS Trust also believe that Irritable Bowel Syndrome (IBS) and Chronic Fatigue Syndrome (CFS) have similar pathologies.

They say it ‘stretches credibility’ to think that such serious conditions are simply the result of mental trauma or psychosocial problems.

The researchers point to the fact that women are far more susceptible to auto-immune diseases – such as pernicious anaemia – where the body’s own immune system begins to attack healthy cells.

Likewise women are around ten times more likely to suffer from anorexia, IBS and CFS suggesting the cause may be similar.

Read more…

 
 
 

PACE Trial: Probing An Untrustworthy Cochrane Review Of Exercise For "Chronic Fatigue Syndrome"

International news

Monday 25 April 2016

 

From James C Coyne's Quick Thoughts blog:

worse than
 

Probing an untrustworthy Cochrane review of exercise for “chronic fatigue syndrome

By James C Coyne
April 23, 2016

Updated April 24, 2016, 9:21 AM US Eastern daylight time: An earlier version of this post had mashed together discussion of the end-of-treatment analyses with the follow-up analyses. That has now been fixed. The implications are even more serious for the credibility of this Cochrane review.

From my work in progress

My ongoing investigation so far has revealed that the 2016 Cochrane review misrepresents how the review was done and what was found in key meta analyses. These problems are related to an undeclared conflict of interest.

The first author and spokesperson for the review, Lillebeth Larun was also the first author on the protocol for a Cochrane review that is not-yet published.

Larun L, Odgaard-Jensen J, Brurberg KG, Chalder T, Dybwad M, Moss-Morris RE, Sharpe M, Wallman K, Wearden A, White PD, Glasziou PP. Exercise therapy for chronic fatigue syndrome (individual patient data) (Protocol). Cochrane Database of Systematic Reviews 2014, Issue 4. Art. No.: CD011040.

At a meeting organized and financed by PACE investigator Peter White, Larun got privileged access to data that the PACE investigators have spent tens of thousands of pounds to keep most of us from viewing. Larun used this information to legitimize outcome switching, p-hacking. The Cochrane review misled readers in presenting how some analyses were conducted in the course of the systematic review.

One of the crucial function of Cochrane reviews is to protect policymakers, clinicians, researchers, and patients from the questionable research practices utilized by trial investigators to promote particular interpretation of their results. The Cochrane review and discussion fails miserably in this respect, with the Cochrane complicit in promoting misinterpretation of some key studies.

Read more…

 
 
 

Taiwanese Singer Ken Chu Suffering From Fibromyalgia

International news

Sunday 24 April 2016

 

From Singapore's International Business Times:

Ken Chu
Taiwanese actor-singer, Ken Chu, is suffering from a
rare disease called 'fibromyalgia'.
(Photo: Ken Chu/Facebook)
 

Ken Chu health update: Mandopop singer says no cure for illness, trying taiji and yoga instead

The actor-singer is suffering from a rare condition called 'fibromyalgia'

By Gungeet Kaur
April 23, 2016

Taiwanese singer-actor Ken Chu, who is recovering from a rare disease, has said there is no specific cure for his illnes but that certain exercises have been useful in improving health.

The 37-year-old recently opened about his rare health condition arising out of 'fibromyalgia syndrome', which the actor has been suffering from for quite some time.

Read more…

 
 
 

Fibromyalgia Vs Lyme Disease: Differences In Symptoms, Causes, And Treatment Options

International news

Sunday 24 April 2016

 

From Bel Marra Health:

Hand with tick
 

Fibromyalgia vs. Lyme disease, differences in symptoms, causes, and treatment options

By Dr. Victor Marchione
Friday, April 22, 2016

Fibromyalgia and Lyme disease are two illnesses that can cause fatigue and pain, but there are vast differences when it comes to their causes, symptoms, and treatment. Although it may be easy to confuse the two, they are very much different, and these differences can help aid in appropriate treatments.

Lyme disease is known as the “Great Imitator,” because it presents itself as many other illnesses. Furthermore, Lyme disease can affect any part of the body, so a doctor may be confused by the symptoms and try to rule out other conditions first.

Patients with Lyme disease are often misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and even mental illnesses like depression. Misdiagnosis of Lyme disease, and fibromyalgia, can be harmful as it can lead to unnecessary medications resulting in side effects and delaying the appropriate mode of treatment. This is why it’s so important to understand the differences between diseases that have common symptoms so that to find the appropriate treatment for each disease and start it early.

Read more…

 
 
 

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