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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: David Mitchell
Topic: What do genes, hormones and supplement insufficiencies have to do with ME/CFS?

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

Saturday 26 August 2017
1:30pm
Speaker: Dr Ros Vallings (via live video from New Zealand)
Topic: The Invest in ME Conference held in London in June 2017

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.

 

An Open Letter To Psychological Medicine, Again!

International news

Friday 24 March 2017

 

From Virology Blog:

 

Virology Blog
 

An open letter to Psychological Medicine, again!

23 March 2017

Last week, Virology Blog posted an open letter to the editors of Psychological Medicine. The letter called on them to retract the misleading findings that participants in the PACE trial for ME/CFS had “recovered” from cognitive behavior therapy and graded exercise therapy. More than 100 scientists, clinicians, other experts and patient organizations signed the letter.

Three days later, I received a response from Sir Robin Murray, the UK editor of Psychological Medicine. Here’s what he wrote:

Thank you for your letter and your continuing interest in the paper on the PACE Trial which Psychological Medicine published. I was interested to learn that Wilshire and colleagues have now published a reanalysis of the original data from the PACE Trial in the journal Fatigue: Biomedicine, Health & Behavior, a publication that I was not previously aware of. Presumably, interested parties will now be able to read this reanalysis and compare the scientific qualiity of the re-analysis with that of the original. My understanding is that this is the way that science advances.

This is an unacceptable response.

 

Full article…

 
 
 

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

South Australian news

Friday 24 March 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…

 
 
 

Yet More Research Shows Chronic Fatigue Syndrome Is Real. When Will Health Services Catch Up?

International news

Thursday 23 March 2017

 

From UK newspaper The Guardian:

 

Doctor and patient
‘One wonders how many times an illness must be shown to
exist before up to 250,000 chronically ill Australians will
no longer be accused of maintaining a collective delusion.’
(Photograph: Alamy Stock Photo)
 

Yet more research shows chronic fatigue syndrome is real. When will health services catch up?

Despite hopeful research, it will be years before chronic fatigue syndrome is taken seriously by GPs and healthcare services. Exercise is not the answer.

By Naomi Chainey
Tuesday 21 March 2017

When The New York Times publishes a piece on the glaring flaws in a large study conducted on the effectiveness of recommended treatments for chronically ill people, saying claims of recovery are “overstated” and “not justified by the data”, I can’t imagine that’s a good thing. However, as someone who has been ill with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS) for over a decade, the article represents hope.

 

Full article…

 
 
 

UK Woman To Take On London Marathon Despite Illness

International news

Wednesday 22 March 2017

 

From UK newspaper Leamington Spa Courier:

 

Emily Twitchett
Emily Twitchett will be running the London Marathon
to raise money for Parkinson's UK.
 

Warwick woman to take on London Marathon despite illness

A woman from Warwick is determined to get through the London Marathon next month despite having Chronic Fatigue Syndrome.

By Jordyn Holliday
March 16, 2017

Emily Twitchett, who is 35 and a part-time teacher at Trinity Catholic School in Leamington, was officially diagnosed with Chronic Fatigue Syndrome (CFS) two years ago.

The syndrome affects a person’s ability to carry out daily tasks because they are always feeling exhausted.

Despite her illness Emily will be taking on the London Marathon on April 23 to help raise awareness for CFS and to also raise money for Parkinson’s UK.

 

Full article…

 
 
 

Cognitive Neuroscientists Use Systems Level Approach To Search For Cause Of CFS

International news

Tuesday 21 March 2017

 

From DePaul University:

 

Deregulated network
This is an example of a deregulated network seen in
people with chronic fatigue syndrome. Note that
nearly all the connections are deregulated,
producing a wide range of symptoms.
(DePaul University/Center for Community Research)
DOWNLOAD
 

Cognitive neuroscientists use systems level approach to search for cause of chronic fatigue syndrome

Researchers hope for new insights to explain the debilitating illness

By Jordyn Holliday
March 16, 2017

CHICAGO — A team of researchers from the Center for Community Research at DePaul University are on a mission to better understand why the brain is less efficient in people with chronic fatigue syndrome (CFS), a disease that many patients refer to by its original name, myalgic encephalomyelitis (ME). This illness is characterized by extreme muscle exhaustion, cognitive deficits, as well as unrefreshing sleep. The innovative systems level approach utilized by the research team may lead to important answers about this disease, they note.

Using electrical neuroimaging, research scientist Marcie Zinn, senior research associate Mark Zinn and professor Leonard Jason, are working to determine the reasons for the brain problems commonly seen in this disease. Their research could potentially lead to improved diagnoses and understanding of the disease, which has debilitated over 17 million people worldwide.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 21 March 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

 
 
 

Getting It Wrong On Chronic Fatigue Syndrome

International news

Monday 13 March 2017

 

From The New York Times:

 

(Image: Jacqueline Tam)
(Image: Jacqueline Tam)
 

Getting It Wrong on Chronic Fatigue Syndrome

By Julie Rehmeyer and David Tuller
March 18, 2017
© The New York Times Company

What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.

 

Full article…

 
 
 

Finance Chief 'Faked Chronic Fatigue To Claim £2.4Million From Insurance Company'

International news

Sunday 19 March 2017

 

From UK newspaper The Evening Standard:

 

Charles Miley
Court battle: banker Charles Miley said his condition
was like a “mental fog”
 

Finance chief ‘faked chronic fatigue to claim £2.4million from insurance company’

By Ross Lydall
16 March 2017
Copyright © 2017 Informa UK Limited

City financier who claimed chronic fatigue left him unable to get out of bed is battling accusations that he faked his symptoms to claim millions of pounds in insurance payouts.

Charles Miley, 51, is locked in a legal dispute with an insurance firm, which claims he was attempting to benefit from an income protection scheme.

The High Court was told that Mr Miley, a former executive at investment bank Piper Jaffray, was secretly filmed propping up the bar for five hours at a beer festival.

Insurers Friends Life employed private investigators as part of a periodic review of his condition.

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 18 March 2017

 

ME/CFS Australia (SA) Inc

Dear Friends,

Here is an opportunity to support our community with minimal cost to health.

Please share widely and let family and friends know that they can purchase their Entertainment Books from us.

For many of us who are unable to dine out, there are many other savings available such as discounts from selected supermarkets and other retailers.

The books and/or vouchers come in handy as gifts for others too!

Kind regards,

Management Committee

 

PS: Books will be available at the next seminar, Saturday 8th April. (Seminar details) Pick up can also be arranged from the office (Suite 506, 19 North Terrace, Hackney) or from Parkside. Please phone for details: 1300 128 339.

 

Read more…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 18 March 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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