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ME/CFS Australia Ltd
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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.

 

Unrest Director Documents Debilitating Life With Chronic Fatigue Syndrome

International news

Thursday 27 April 2017

 

From CBC Radio-Canada's program The Current:

 

Jennifer Brea
More than 17 million people suffer from
Myalgic Encephalomyelitis (ME), also known as
chronic fatigue syndrome, around the world.
Around 80 per cent of those who contract the
disease find it is triggered by an acute infection.
(unrest.film/Shellafilms)
 

Unrest director documents debilitating life with chronic fatigue syndrome

By Anna Maria Tremonti
Wednesday April 26, 2017
©2017 CBC/Radio-Canada. All rights reserved

Audio Listen

Read story transcript

Jennifer Brea was in the prime of her life — working on her PhD at a prestigious university, newly married and living an active lifestyle when it all changed. After contracting an infection, she never quite recovered.

"It was a really scary and isolating experience to have my body fall apart and to not have anyone be able to explain to me what was happening to or what I can expect ... I went to doctor after doctor and was often told I was stressed or depressed and it took me quite some time to get a diagnosis," she tells The Current's guest host Laura Lynch recalling that time.

 

Full article…

 
 
 

Gut Bacteria In ME/CFS May Influence Disease Severity

International news

Thursday 27 April 2017

 

From The Microbe Discovery Project:

 

Body
 

IAN LIPKIN’S CII TEAM SHOWS GUT BACTERIA IN ME/CFS MAY INFLUENCE DISEASE SEVERITY

By administrator
April 26, 2017
© 2017 The Microbe Discovery Project

“Much like IBS, ME/CFS may involve a breakdown in the bidirectional communication between the brain and the gut mediated by bacteria, their metabolites, and the molecules they influence. By identifying the specific bacteria involved, we are one step closer to more accurate diagnosis and targeted therapies.”
~ Ian Lipkin, director of CII and John Snow Professor of Epidemiology at Columbia’s Mailman School.

Anticipated work from the CII teams’ early investigative research into ME/CFS is starting to be published. The new study in the journal Microbiome from Drs Ian Lipkin and Mady Hornig at Columbia University Center for Infection and Immunity (CII) finds abnormal levels of certain types of bacteria in the gut microbiome of ME/CFS patients. It also found disturbances in bacterial metabolic pathways that, in combination with the changes in bacteria, may influence disease severity.

The CII team collaborated with some of the top clinicians in the field, including Klimas, Peterson, Montoya, Bateman and Levine, to ensure they had rigorously-diagnosed patients. Harvard Professor Tony Komaroff was part of the team too. The open access paper is titled ‘Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome’.

Researchers took fecal and blood samples from 50 patients and 50 healthy controls. They analysed cytokines in the blood, as they did in their original cytokine study and they applied metagenomics to the fecal samples. Metagenomics is a new field that combines remarkable technology for sequencing huge amounts of DNA with a kind of sophisticated genetic detective work to not only identify which bacteria are present, but also which bacterial metabolic pathways are active too. ME/CFS patients differed from controls in both.

 

Full article…

 
 
 

Fibromyalgia Patients Sleep Less And Worse Than Healthy People, Study Says

International news

Wednesday 26 April 2017

 

From Fibromyalgia News Today:

 

Woman sleeping
 

Fibromyalgia Patients Sleep Less and Worse Than Healthy People, Study Says

By Joana Fernandes, PhD
April 3, 2017
Copyright © 2013-2017 All rights reserved.

People with fibromyalgia have more difficulty falling asleep and sleep worse and less compared to the general population, according to the results of a new review. Researchers called for the attention of doctors in treating sleep disturbances in patients with fibromyalgia, as better sleep may help improve disease symptoms.

The study, “Sleep Disturbances In Fibromyalgia: A Meta-Analysis Of Case-Control Studies,” published in the Journal of Psychosomatic Research, reviewed several previously published studies reporting the contribution of sleep disturbances in the development of fibromyalgia.

 

Full article…

 
 
 

'Bubble Girl' Amelia Hill Enjoys Brief Ray Of Sunshine

South Australian news

Tuesday 25 April 2017

 

From news.com.au:

 

Amelia Hill
Adelaide woman Amelia Hill is a 'bubble girl'
who is allergic to almost everything.
(Source: Facebook)
 

‘Bubble girl’ Amelia Hill enjoys brief ray of sunshine

News Limited Copyright © 2017

‘BUBBLE girl’ Amelia Hill is rarely able to leave her chemical-free home but last weekend the Adelaide woman was briefly able to feel the warmth of the sun on her skin for the first time in months.

The 41-year-old is virtually housebound after being exposed to termite spray when she was 15 years old, which has left her allergic to almost everything.

Ms Hill’s reactions gradually got worse as she got older and her health has deteriorated even more in recent months, leaving her unable to sit up.

...

Ms Hill currently has to remain in a reclined position every day as she fights the impacts of multiple chemical sensitivity, chronic fatigue syndrome and electrohypersensitivity.

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 25 April 2017

 

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

 
 
 

Bedfest

International news

Monday 24 April 2017

 

From ME Action:

 

Bedfest
 

Bedfest

Copyright © 2015 The Myalgic Encephalomyelitis Action Network, All Rights Reserved

About Bedfest

#BedFest is a virtual concert to showcase the experience of living with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome as expressed through song, spoken word, poetry or silent expression in the form of a short video clip or photo. #BedFest premieres on Saturday, May 6th.

#MEAction will showcase your submissions on our website as part of a virtual concert on May 6th. We will also host a BlueJeans call for participants to discuss their work, the act of expressing oneself while suffering with ME, and for the community to share the moment together.

Send in submissions by April 30th to bedfest@meaction.net. See submission guidelines below.

Noa from Germany sent in this beautiful song she wrote called, “Sometimes I Cry,” for #Bedfest, which she performed on a tenor ukulele.

Participate in the #BelieveME video

As part of the festival, we are also partnering with musician Kaeley Pruitt-Hamm who has recorded an EP Hi From Pillows from her bed. As part of #BedFest, Kaeley will re-release her music video, “Believe Her,” to include faces of people with ME from around the world. We want to represent the diversity of people with ME and welcome submissions from all ages, races and genders.

To be part of the re-mix of Kaeley’s music video, send in a still photo of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. Send in submissions to believeme@meaction.net.

Read about Kaeley’s journey here.

#BedFest Submission Guidelines

  1. Performance must be done from a bed.
  1. We welcome any kind of performance or song about the experience of living with, or being diagnosed with ME or ME/CFS. You may consider expressing the theme of not being believed for your illness to correspond with Kaeley’s music video “Believe Her.”
  1. Performance options may include, but are not limited to:
  • song (a cover song is fine)
  • spoken word
  • skit
  • poem
  • visual art
  • message (written, acted out, painted etc.)
  • silent demonstration (for example, filming a clip of yourself lying in bed with your eyes and ears covered)
  1. Time limit for video, 1-5 mins. We suggest you submit a video since #BedFest is a virtual concert, but if you feel that a photo captures your expression better, we welcome that, as well.
     
  2. Along with your submission, include a little bit about yourself in the email (if you are comfortable), such as your age, how long you’ve been ill, city of residence, former occupation, your current hobbies, what is the first thing you’d do if you recovered today etc.
     
  3. Deadline for submissions: April 30th. Send submissions to bedfest@meaction.net.
     
  4. Use the hashtag #BedFest to promote your video on social media on May 6th.

RSVP HERE

 

*Learn more about the artist, Elizabeth D’Angelo, who created the #BedFest banner.

 

Full article…

 
 
 

ME/CFS Australia (SA) Inc Co-Signs International Open Letter

South Australian news

Monday 24 April 2017

 

ME/CFS Australia (SA) Inc
 

ME/CFS Australia (SA) 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 Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.

 

Read more…

 
 
 

Medicinal Cannabis Prescription Now Allowed By SA Doctors

International news

Sunday 23 April 2017

 

From Australia's ABC News:

 

Medical marijuana capsules
Photo: Doctors will be allowed to prescribe
up to two months of treatment.
(ABC News: Kathy Lord)
 

Medicinal cannabis prescription now allowed by SA doctors

By Lauren Waldhuter
Sunday 23 April 2017
© 2017 ABC

Doctors will be able to prescribe the medicinal use of cannabis, but only as a short-term treatment, in South Australia from this week.

 

Full article…

 
 
 

'It Robs You Of Your Very Being': Life With The Invisible Illness

International news

Sunday 23 April 2017

 

From Irish news outlet TheJournal.ie:

 

Jo Allen
Jo Allen
(Source: Nicky Ryan/TheJournal.ie)
 

'It robs you of your very being': Life with the invisible illness

Jo Allen has a chronic pain condition and has been getting some relief from cannabis-derived medicine.

Monday April 17, 2017
Content copyright © Journal Media Ltd. 2017

This phrase is something Jo Allen hears a lot, as do many people with fibromyalgia. People with the condition often look completely healthy, but are in near-constant pain.

Fibromyalgia is a chronic pain condition that has a broad spectrum of related symptoms including fatigue, cognitive dysfunction and reduced physical function. Its nickname is ‘the invisible illness’.


Source: TheJournal.ie/YouTube
Video: Nicky Ryan/TheJournal.ie

 

Full article…

 
 
 

Entertainment Book

South Australian news

Saturday 22 April 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 22 April 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 five 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

PDF Download this document (PDF, 83 KB)

 
 
 

Award-Winning Vancouver Singer Performs Opera, Musical Theatre And More For Charity

International news

Friday 21 April 2017

 

From Broadway World Vancouver:

 

Here I Stand
 

Award-Winning Vancouver Singer Performs Opera, Musical Theatre and More for Charity

By BWW News Desk
Apr. 19, 2017
© 2017 Wisdom Digital Media

This May, an award-winning soprano will sing to support chronic neuro-immune disease awareness. On Saturday, May 13th, 25-year-old Jacqueline Ko will present the gala benefit concert Here I Stand at Marpole United Church. The show honours the May 12th International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS & FM), and a portion of every ticket sale supports the ME/FM Society of BC.

Ko has suffered from ME/CFS since age six and she wants to use her passion for music to raise awareness for the disease, which affects around 28 million people worldwide. "ME can change the course of your life forever - it certainly did for me," Ko says. "I've seen studies that compare its impact to multiple sclerosis, late-stage cancer or congestive heart failure, but it's still rare for this disease to be taught in medical school. They say as many as 9 out of 10 people aren't even diagnosed. I was lucky in that regard - but the fact is, even with a diagnosis, they still don't fully understand the cause or have a cure."

 

Full article…

 
 
 

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

South Australian news

Friday 21 April 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…

 
 
 

More In The News


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