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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
Dr Katia Ferrar and Ms Minh Pham from the University of South Australia discuss the research study “Physical activity and time use patterns of adults with chronic fatigue syndrome”.

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

Saturday 25 June 2016
1:30pm
Dr Ian Buttfield discusses the ANRES website.
Mr Max Nelson discusses his PhD and two-day bike test study.
Dr Katia Ferrar presents an information document on her research.

Saturday 27 August 2016
Annual General Meeting
1:30pm

Saturday 19 November 2016
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
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: (08) 8346 3237 or 1300 128 339 for country callers
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

 

 

Getting To The Heart Of Chronic Fatigue Syndrome

International news

Saturday 18 June 2016

 

From ScienceDaily:

 

Dr Fred Friedberg explains
Dr. Fred Friedberg explains the heart monitor and
electrode placement used in the chronic fatigue syndrome
study to fellow investigator Dr. Patricia Bruckenthal of the
School of Nursing, and Jenna Adamowicz, center, study
coordinator from the Department Psychiatry.
(Credit: Image courtesy of Stony Brook University)
 

Getting to the heart of chronic fatigue syndrome

June 23, 2016
Source: Stony Brook University

Copyright 2016 ScienceDaily or by third parties, where indicated.

By better understanding daily activity levels and heart rate patterns of those who suffer from Chronic Fatigue Syndrome (CFS), scientists hope to discover more about this complex illness condition. Fred Friedberg, PhD, Associate Professor of Psychiatry at Stony Brook University School of Medicine, has received a four-year $1.5 million grant from the National Institutes of Health to take this research approach to determine if heart rate fluctuations in combination with certain daily activity patterns can be used to predict or prevent relapse in people with CFS.

According to Dr. Friedberg, also the President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, CFS affects some one million people in the United State and millions worldwide. This condition is characterized by a state of chronic fatigue and other debilitating symptoms, such as post-exertional collapse and cognitive difficulties. These symptoms and related impairments persist for more than six months and have no clearly identified cause.

Story Source:

The above post is reprinted from materials provided by Stony Brook UniversityNote: Materials may be edited for content and length.

 

Full article…

 
 
 

Online Survey: Fibromyalgia – Coping And Functioning

South Australian news

Saturday 25 June 2016

 

From The University of Adelaide's Heather Trainor:

 

The University of Adelaide
 

Fibromyalgia: Coping and Functioning study

Dear Participant,

You are invited to participate in the research project described below.

What is the project about?

The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.

Who is undertaking the project?

This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.

Who is invited to participate?

Participation in this study is open to people who:

  • Have received a diagnosis of Fibromyalgia from a medical practitioner
  • Are Australian residents
  • Are over the age of 18
  • Are proficient in English (no translation services available)

 

Read more…

 
 
 

Disability Support Pension: Successful Claims 'Plummeting' After Government Rule Change

Australian news

Friday 24 June 2016

 

From Australia's ABC News:

 

Centrelink
 

Disability support pension: Successful claims 'plummeting' after Government rule change

By social affairs correspondent Norman Hermant
Friday June 24, 2016

It has never been tougher to make a successful claim for the Disability Support Pension (DSP), new Government figures suggest.

Hundreds of thousands of people who are unable to work more than 15 hours a week rely on the payment.

But statistics from the Department of Social Services obtained by the ABC indicate only about 15 per cent of current applicants are granted the DSP.

The vast majority are rejected.

 

Full article…

 
 
 

Society Seminar Reminder

South Australian news

Friday 24 June 2016

 

A reminder that the society's next seminar will be held tomorrow (Saturday, 25 June 2016):

 

ME/CFS Australia (SA) Inc
 

Society Seminar

Saturday 25 June 2016
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speakers:

Dr Ian Buttfield discusses the ANRES website.

Mr Max Nelson discusses his PhD and two-day bike test study.

Dr Katia Ferrar presents her information document on her research.

 

Details…

 
 
 

National Pharmacies Information About ME/CFS

Australian news

Friday 24 June 2016

 

From National Pharmacies' Vital Health:

 

National Pharmacies Vital health
 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

By Ms Patria Gough, MBA

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a serious, complex, disabling illness which causes incapacitating fatigue, pain, sleep dysfunction, cognitive impairment and other neurological, autonomic and immune symptoms. It can be likened to having a severe case of glandular fever and the flu and having a run a marathon all at the same time… and that goes on for years. Severe sufferers describe their experience as a ‘living death’. Occasionally it does cause death.[1]

The key symptom for ME/CFS is Post Exertional Debility, which means that symptoms worsen after physical or cognitive effort. This is unlike healthy fatigue, which you can often push through and can be reversed by sleep. For people with ME/CFS, everyday tasks like showering, cleaning your teeth, talking or reading can make you even more unwell. Many of us are unaware that the very young and adolescents can suffer from ME/CFS, disrupting schooling, and like Multiple Sclerosis, Lupus and Rheumatoid Arthritis, it affects more women than men.

Impact on individuals and their families

A conservative figure tells us that approximately 101,000 Australians suffer from ME/CFS, and 25% of these sufferers are housebound or bedbound!

As a community we are largely unaware of the prevalence and the significant impact this illness has on the lives of those with ME/CFS and their families. What we do know is that ME/CFS has the lowest health-related quality of life score compared to 21 major illnesses, including chronic renal failure, stroke, heart angina, colon, prostate, lung and breast cancer.[2]

People with ME/CFS often experience profound isolation as family and friends struggle to understand the illness and the limitations it imposes on sufferers. It can often be difficult for people to know how to engage with and support someone with ME/CFS.

Treatment

To date there are no officially approved medical treatments. Patients often have to do their own research and be their own practitioners, often relying heavily on nutritional supplements to aid in relieving some of their many symptoms.

Broader impact on society

ME/CFS costs Australia billions of dollars every year in lost income, medical support and social services. Federal government research funding was $121,000 in 2015 – given the burden of the illness on individuals, families and communities – this is not significant. Public awareness, donations and fundraising are all insufficient due to patients being too unwell to take action on their own behalf.

Awareness activities

You might have seen buildings lit up in blue on 12 May… this was to mark International Awareness Day for ME/CFS. On 25 May there was a global protest involving many cities around the world called #MissingMillions. This highlighted the life roles lost to this debilitating, life-sapping illness and called for more research funding, treatments, support for patients and education for health professionals.

You can still help! Raise awareness by placing photos of empty shoes on social media, with the hashtag #putoutyourshoes to represent a person with ME/CFS who is missing out on work, school, sport, hobbies or the social activities in their life.

More information

If you would like more information on this serious and somewhat enigmatic issue you can find out more here: http://may12th.org.au/.

References

[1] https://www.newscientist.com/article/dn9342-first-official-death-from-chronic-fatigue-syndrome/

[2] https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421

Author

Ms Patria Gough, MBA, Social Marketing and Health Communications Consultant

 

Full article…

 
 
 

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

South Australian news

Friday 24 June 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.

 

Full article…

 
 
 

Morisaki Battles Chronic Fatigue To Play 400th Game

International news

Thursday 23 June 2016

 

From The Japan News:

 

Kazuyuki Morisaki
Kazuyuki Morisaki
 

Morisaki battles chronic fatigue to play 400th game

By Yasuhiro Fujimoto / Yomiuri Shimbun Sports Writer
June 22, 2016

© The Yomiuri Shimbun

HIROSHIMA — Despite battling a disorder that saps his energy, Sanfrecce Hiroshima midfielder Kazuyuki Morisaki reached a milestone for longevity that put him in an elite group of players in J.League history.

When Morisaki took the field for Sanfrecce’s May 21 match against Gamba Osaka, it marked the 400th first-division match of the 35-year-old’s career, making him the first Sanfrecce player to achieve the mark and 14th overall in the league history.

 

Full article…

 
 
 

Half The UK Is Living With Chronic Pain, Study Finds

International news

Thursday 23 June 2016

 

From Forbes:

 

Tablets
 

Half The UK Is Living With Chronic Pain, Study Finds

By Robert Glatter, MD
June 21, 2016

Opinions expressed by Forbes Contributors are their own.

According to a new study, nearly half of the UK population, or 28 million adults, is living and coping with chronic pain.

The research was published yesterday [Monday June 20, 2016] in the journal BMJ Open.

 

Full article…

 
 
 

Killer Cell Immunoglobulin-like Receptor Genotype And Haplotype Investigation Of Natural Killer Cells From An Australian Population Of ME/CFS Patients

Australian news

Wednesday 22 June 2016

 

From Gene Regulation and Systems Biology (via Libertas Academica):

 

Libertas Academica
 

Killer Cell Immunoglobulin-like Receptor Genotype and Haplotype Investigation of Natural Killer Cells from an Australian Population of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients

T. K. Huth, E. W. Brenu, D. R. Staines, and S. M. Marshall-Gradisnik
Gene Regulation and Systems Biology 2016:10 43-49
Original Research
Published on 19 Jun 2016
DOI: 10.4137/GRSB.S39861

Further metadata provided in PDF:

PDF Download Article PDF

Abstract

Killer cell immunoglobulin-like receptor (KIR) genes encode for activating and inhibitory surface receptors, which are correlated with the regulation of Natural Killer (NK) cell cytotoxic activity.

Reduced NK cell cytotoxic activity has been consistently reported in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients, and KIR haplotypes and allelic polymorphism remain to be investigated.

The aim of this article was to conduct a pilot study to examine KIR genotypes, haplotypes, and allelic polymorphism in CFS/ME patients and nonfatigued controls (NFCs).

Comparison of KIR and allelic polymorphism frequencies revealed no significant differences between 20 CFS/ME patients and 20 NFCs. A lower frequency of the telomeric A/B motif (P < 0.05) was observed in CFS/ME patients compared with NFCs.

This pilot study is the first to report the differences in the frequency of KIR on the telomeric A/B motif in CFS/ME patients.

Further studies with a larger CFS/ME cohort are required to validate these results.

 

Full article…

 
 
 

Researchers Call For More In-Depth Mitochondrial Testing In ME/CFS

International news

Wednesday 22 June 2016

 

From Health Rising:

 

Mitochondria
 

Researchers Call For More In-depth Mitochondrial Testing in Chronic Fatigue Syndrome (ME/CFS)

By Cort Johnson
Tuesday June 21, 2016

A letter to the editor of the BioMed Central Journal urged more in depth mitochondrial testing than has been done be done in ME/CFS. The letter referred to a study done by an ME/CFS researcher, Maureen Hanson, and funded by the Chronic Fatigue Initiative.

The CFI is very interested in the mitochondria and it is funding more research by Dr. Hanson - so they made an honest effort to find something. They did find something, but the results were not particularly encouraging.

Results

No ME/CFS subject exhibited known disease-causing mtDNA mutations. Extent of heteroplasmy was low in all subjects. Although no association between mtDNA SNPs and ME/CFS vs. healthy status was observed, haplogroups J, U and H as well as eight SNPs in ME/CFS cases were significantly associated with individual symptoms, symptom clusters, or symptom severity.

Conclusions

Analysis of mitochondrial genomes in ME/CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to ME/CFS of individuals carrying particular mitochondrial genomes or SNPs was observed.

The two researcher researchers proposed that study into the mitochondria in ME/CFS be deepened. They proposed

  • that nuclear DNA (nDNA) be studied (as well as mtDNA)
  • that parts of the mitochondria other than the respiratory chain such as betaoxidation, hem synthesis, calcium handling, coenzyme-Q metabolism, or the urea cycle be examined
  • that analyses be done on other than blood lymphocytes
  • that immune-histological and biochemical examinations of muscle biopsies be done. In fact, they said these types of investigations "were essential not to miss dysfunction of the respiratory chain or other mitochondrial pathways.

The mitochondria are known to be very complex. In fact, one of the problems facing the field apparently is just how complex they are and this letter reflected that.

 

Full article…

 
 
 

Fibromyalgia, Chronic Fatigue Syndrome Can Be Improved With Vitamin B12 And Folic Acid: Study

International news

Tuesday 21 June 2016

 

From Bel Marra Health:

 

Tablet
 

Fibromyalgia, chronic fatigue syndrome can be improved with vitamin B12 and folic acid: Study

By Bel Marra Health
Monday, June 20, 2016

Copyright © 2016 BelMarraHealth. All Rights Reserved.

New research suggests that fibromyalgia and myalgic encephalomyelitis (also known as chronic fatigue syndrome) can be improved through therapy based on vitamin B12 and folic acid.

...

Myalgic encephalomyelitis patients have responded well to frequent vitamin B12 injections with oral folic acid. In the study, researchers analyzed close to 40 ME patients with or without fibromyalgia who received the B12 at least once a week for anywhere from six months to several years. Patients were grouped into good and mild responders for B12 and folic acid therapy. It turned out that 80 percent of the good responders had myalgic encephalomyelitis and 52 percent of mild responders had ME and fibromyalgia.

 

Full article…

 
 
 

Society Seminar Reminder

South Australian news

Monday 20 June 2016

 

A reminder that the society's next seminar will be held this Saturday, 25 June 2016:

 

ME/CFS Australia (SA) Inc
 

Society Seminar

Saturday 25 June 2016
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speakers:

Dr Ian Buttfield discusses the ANRES website.

Mr Max Nelson discusses his PhD and two-day bike test study.

Dr Katia Ferrar presents her information document on her research.

 

Details…

 
 
 

Jodi Bassett Online Guest Book

International news

Sunday 19 June 2016

 

The West Australian newspaper has a Guest Book for people to leave their condolences for the late Jodi Bassett:

 

Pen
 

JODI BASSETT

This Guest Book will remain online until 18/07/2016

Guest Book

 
 
 

International ME Conference 2016 Report

International news

Sunday 19 June 2016

 

Dr Rosamund Vallings has produced a report of Invest In ME's International ME Conference 2016. It's a 10-page PDF file:

PDFInvest In ME Conference 2016 Report

The document begins:

 

Invest In ME
 

IIMEC11 Conference Report

By Dr Rosamund Vallings

Invest in ME C11 2016 On 3rd June, 2016, I was privileged to attend the 11th Invest in ME – Research International conference in London - the theme being “A New Decade of Invest in ME - Research”.

The conference was held at a wonderful venue, at number 1, Great George St, Westminster. This provided space, and being all on one floor, was suited well to those with ME/CFS. And we could look upwards at the magnificent painted ceiling during breaks.

The conference was, as always, well attended by those with ME/CFS, carers, advocates, doctors and researchers. 18 countries were represented.

 

The conference has also been covered by Phoenix Rising:

Phoenix Rising: A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016

 
 
 

More In The News


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