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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

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
Topic: Brain structural changes in ME/CFS – recent research findings

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
Annual General Meeting
1:30pm
Speaker: Max Nelson
Topic: Results of the two-day bike test study.
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)

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
AUSTRALIA
ME/CFS Australia Ltd.
Web: mecfs.org.au
Email: mecfsaustralia@gmail.com
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
VIC/TAS/NT
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.

 

Poor Sexual Health Among Women With Fibromyalgia Needs More Attention, Researchers Say

International news

Thursday 29 June 2017

 

From Fibromyalgia News Today:

 

Bill Kent
 

Poor Sexual Health Among Women with Fibromyalgia Needs More Attention, Researchers Say

By Magdalena Kegel
June 19, 2017
Copyright © 2013-2017 All rights reserved.

Fibromyalgia can be a significant obstacle to sexual health among affected women, according to a recent study, which underscored that a lack of understanding among partners contributes to poor sexual relationships.

Pain or stiffness related to sexual acts also tends to give rise to a downward spiral of worries and fears related to sexuality, which then further aggravates the problem by reducing the desire for, and pleasure of, sex.

Still, not all women with fibromyalgia see lost sexuality as a problem, the study, “Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study,” showed. The work was published in the Journal of Advanced Nursing.

 

Full article…

 
 
 

World's Fastest Human Supports Walk

International news

Wednesday 28 June 2017

 

From UK newspaper the Shoreham Herald:

 

Bill Kent
Bill Kent, secretary of reMEmber, wearing the t-shirt
presented to the charity by sprinter Usain Bolt.
 

World’s fastest human supports walk

Tuesday 27 June 2017
© 2017 Johnston Publishing Ltd. All rights reserved.

Sprinter Usain Bolt has shown his support for a West Sussex charity helping people with ME.

Currently the fastest human in the world, the Olympian presented reMEmber with a t-shirt, which will be worn by secretary Bill Kent on Sunday at the annual sponsored walk.

As in previous years, Bill’s Windmill Walk for reMEmber will be from Clayton Windmills to Ditchling Beacon and back, starting at 10.30am and finishing at about 1pm.

Bill said: “I would like as many as possible to join me and to get sponsors. If you can’t do the walk yourself, ask a friend or relative to do it, or you can sponsor me. Every penny we raise will go to help adults and children who have ME. Let’s beat last year’s £350.

“This event is supported by Usain Bolt, who has donated a T-shirt which he has autographed.”

 

Full article…

 
 
 

Carers Of Children With ME In The UK 'Accused Of Fabrication'

International news

Wednesday 28 June 2017

 

From the BBC:

 

Child
Chronic Fatigue Syndrome, or ME, affects
about 25,000 children in the UK
(Photo: Science Photo Library)

 

Carers of children with ME 'accused of fabrication'

27 June 2017
Copyright © 2017 BBC.

A "significant number" of those caring for children with ME have been accused of fabricating their child's illness, a survey has found.

The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.

Its chief executive said children and their carers faced the "double whammy" of an ME diagnosis and not being believed about their condition.

 

Full article…

 
 
 

Muscle Injections With Lidocaine Improve Resting Fatigue And Pain In Patients With Chronic Fatigue Syndrome

International news

Wednesday 28 June 2017

 

From the Journal of Pain Research (via Dovepress):

 

Injection

 

Muscle injections with lidocaine improve resting fatigue and pain in patients with chronic fatigue syndrome

Authors Staud R, Kizer T, Robinson ME
Received 12 April 2017
Accepted for publication 3 May 2017
Published 26 June 2017 Volume 2017:10 Pages 1477—1486
DOI https://doi.org/10.2147/JPR.S139466
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Colin Mak
Peer reviewer comments 2
Editor who approved publication: Dr Katherine Hanlon

Roland Staud,1 Taylor Kizer,1 Michael E Robinson2

1Department of Medicine, College of Medicine, 2Department of Clinical and Health Psychology, University of Florida, Gainesville, FL, USA

© Copyright 2017Dove Press Ltd

Objective: Patients with chronic fatigue syndrome (CFS) complain of long-lasting fatigue and pain which are not relieved by rest and worsened by physical exertion. Previous research has implicated metaboreceptors of muscles to play an important role for chronic fatigue and pain. Therefore, we hypothesized that blocking impulse input from deep tissues with intramuscular lidocaine injections would improve not only the pain but also fatigue of CFS patients.

Methods: In a double-blind, placebo-controlled study, 58 CFS patients received 20 mL of 1% lidocaine (200 mg) or normal saline once into both trapezius and gluteal muscles. Study outcomes included clinical fatigue and pain, depression, and anxiety. In addition, mechanical and heat hyperalgesia were assessed and serum levels of lidocaine were obtained after the injections.

Results: Fatigue ratings of CFS patients decreased significantly more after lidocaine compared to saline injections (p = 0.03). In contrast, muscle injections reduced pain, depression, and anxiety (p < 0.001), but these changes were not statistically different between lidocaine and saline (p > 0.05). Lidocaine injections increased mechanical pain thresholds of CFS patients (p = 0.04) but did not affect their heat hyperalgesia. Importantly, mood changes or lidocaine serum levels did not significantly predict fatigue reductions.

Conclusion: These results demonstrate that lidocaine injections reduce clinical fatigue of CFS patients significantly more than placebo, suggesting an important role of peripheral tissues for chronic fatigue. Future investigations will be necessary to evaluate the clinical benefits of such interventions.

Keywords: muscle injections, lidocaine, metaboreceptor, chronic fatigue

 

Full article…

 
 
 

Society Constitution

South Australian news

Wednesday 28 June 2017

 

ME/CFS Society (SA) IncThe Society’s Constitution has been updated:

 

PDF

ME/CFS Australia (SA) Inc Constitution (PDF, 311KB)

 
 
 

One Year After Nomoreloss' Death, Wife, Phoenix Suffering From Chronic Illness

International news

Tuesday 27 June 2017

 

From Nigerian news outlet The Net:

 

Adeola "Phoenix" Osinuga
Adeola "Phoenix" Osinuga

 

One year after Nomoreloss’ death, wife, Phoenix suffering from chronic illness

By Hassan Sanusi
June 21 2017

STORY HIGHLIGHTS

She's suffering from a rheumatic condition characterized by muscular or musculoskeletal pain.

Adeola ‘Phoenix’ Osinuga, the wife of late singer Nomoreloss is presently down with chronic disease.

The OAP has been suffering in daily silence with the painful syndrome called fibromyalgia for a while now.

‘I can almost open my own pharmacy at this rate,’ she said. ‘Sometimes, you need painkillers for the pain caused by going to the hospital for painkillers.’

 

Full article…

 
 
 

Participants Needed For Online Survey

South Australian news

Tuesday 27 June 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

 
 
 

No Increased Risk Of Chronic Fatigue Syndrome After HPV Vaccination

International news

Monday 26 June 2017

 

From the Norwegian Institute of Public Health:

 

Girls
(Foto: Colourbox)

 

No increased risk of chronic fatigue syndrome after HPV vaccination

Published 23.06.2017

Girls receiving one or more doses of HPV vaccine have no greater risk of chronic fatigue syndrome/myalgic encephalomyelitis (CFS / ME) than unvaccinated girls. This is shown in a new major study from the Norwegian Institute of Public Health.

The study is part of the national surveillance of the HPV vaccination programme and includes data from more than 175,000 girls in the first six birth cohorts who were offered the vaccine in 7th grade. 145,000 of these received one or more doses of HPV vaccine.

"This is a major study where we have investigated the association between HPV vaccination and chronic fatigue syndrome. The incidence of this disease has increased in Norway, but we found no association with HPV vaccination," says first author of the study, Berit Feiring from the Department of Infectious Disease Epidemiology and Modelling at the Norwegian Institute of Public Health.

 

Full article…

 
 
 

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

South Australian news

Monday 26 June 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…

 
 
 

First Cannabinoid-Based Transdermal Patch For Chronic Pain Is Ready For Release

International news

Sunday 25 June 2017

 

From Fibromyalgia News Today:

 

Marijuana

 

First Cannabinoid-Based Transdermal Patch for Chronic Pain Is Ready for Release

By Carolina Henriques
June 23, 2017
Copyright © 2013-2017 All rights reserved.

The first batch of the Chronic Pain CBIS Transdermal Patch will soon be released, offering a cannabinoid-based alternative to people around the globe who self-medicate for fibromyalgia and other chronic pain conditions, Cannabis Science has announced.

In November 2016, the company announced the development of two new medications for pain relief in people with fibromyalgia, neuropathy, diabetic nerve pain, back strains, and other pain-related conditions. These pain relievers correspond to transdermal adhesive patches that deliver a certain dose of medication into the bloodstream by absorption through the patient’s skin.

The first CBIS Transdermal Patch contains high-potency cannabinoid (CBD) extract, the second major cannabinoid in marijuana after tetrahydrocannabinol (THC). CBD has all the anti-inflammatory and pain-relieving properties without any psychoactive effects, and research has demonstrated that it can be an effective treatment for inflammatory pain. Some studies have even demonstrated that CBD might outperform traditional pain medication in some cases.

 

Full article…

 
 
 

Research Participants Wanted To Develop A Creative Resource About Living With ME/CFS And Fibromyalgia

South Australian news

Sunday 25 June 2017

 

From PhD candidate Gipsy Hosking (via email):

 

University of South Australia
 

Research participants wanted to develop a creative resource about living with ME/CFS and Fibromyalgia

31 May 2017

Researcher: Gipsy Hosking, PhD Candidate, University of South Australia

I’m looking for Adelaide based people, aged 18-30 who are currently living with ME/CFS and/or Fibromyalgia.

If this is you then you are invited to participate in an 8-session group to collectively develop a resource for people living with ME/CFS and Fibromyalgia. This resource will be based on your stories of lived experience and may take a variety of forms such as a booklet, website, short film, photo essay, collection of short fiction etc – it will be up to the group to decide. This is a chance to tell your story, to connect with others and to co-author a much-needed resource both to help others living with these conditions and to educate the general public.

This group is taking place as part of my PhD research project at UniSA on young adult’s lived experiences of ME/CFS and Fibromyalgia. The resource that we create will form the basis of my thesis discussion and analysis.

Please know that I have ME/CFS myself and I am mindful of the debilitating effects of these conditions. I aim to make the group as chronic illness friendly as I can.

For more information please contact me and I will send you a detailed information sheet or if you have facebook you can check out my Facebook page.

If you are interested in taking part or have any questions please contact me at Gipsy.Hosking@myuni.unisa.edu.au or 0408 266 075 or you can message me via the Facebook page www.facebook.com/GHresearch/.

***********************************

DOCX Call for participants plain text.docx (135 KB)

PDF Call for participants flyer.pdf (137 KB)

PDF Participant Info Sheet.pdf (155 KB)

 
 
 

Petition: Stop The Closure Of Welfare Rights Centre SA

South Australian news

Sunday 25 June 2017

 

From Change.org:

 

WRC
 

STOP THE CLOSURE OF WELFARE RIGHTS CENTRE SA

By Stephany Del Canto
1 June 2017

© 2017, Change.org, Inc.
Certified B Corporation

AWARD WINNING SPECIALIST WELFARE RIGHTS CENTRE SA FACING CLOSURE

Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.

...

In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.

Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.

This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.

 

Full article…

 
 
 

Society Seminar Reminder

South Australian news

Saturday 24 June 2017

 

ME/CFS Society (SA) IncA reminder that the society's next seminar will be held today (Saturday 24 June 2017):

 

Society Seminar

Saturday 24 June 2017
1:30 pm

Location: Sophia House, 225 Cross Road, Cumberland Park

Speaker: Dr Richard Kwiatek

Topic: Brain structural changes in ME/CFS – recent research findings.

 

Details…

 
 
 

Entertainment Book

South Australian news

Saturday 24 June 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

 

Read more…

 
 
 

UniSA Gaming Study Recruitment

South Australian news

Saturday 24 June 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)

 
 
 

Writing, Living, Laughing: How One Woman Lives Her Best Life With Fibromyalgia In Ghana

International news

Friday 23 June 2017

 

From Ghana news outlet YEN.com.gh:

 

Writing, Living, Laughing

 

Writing, Living, Laughing: How one woman lives her best life with Fibromyalgia Syndrome in Ghana

Author: M. Quarshie
Thursday June 22, 2017
All Rights Reserved. © 2015-2017 YEN.com.gh Ghana News

Editor's Note: YEN.com.gh features a young woman in Ghana living with Fibromyalgia Syndrome, a incurable disorder that is widely unknown especially in Ghana. She agreed to be featured under the condition of anonymity. Her story seeks to bring awareness to the disorder and what it's like living with it.

What is this madness that makes me // carry myself into the future, // leaving happiness behind, // torturing myself this way?

K.

A writer, poet and literary enthusiast. Life on the outside looks pretty normal. She is on her way to earning her PhD, and is among the leading new faces in Ghana’s writing scene.

“I am a writer, I am a literary enthusiast, I blog. I am serious about building a writing career and I’m also an academic. I also love food, which I want to develop and do something with,” is how she introduces herself.

K. is a young woman living with a condition called Fibromyalgia Syndrome. This chronic condition is still widely unknown, especially in Ghana. With the ongoing research about it, there are still differing schools of thought on whether it is an autoimmune disorder or a neurological one.

 

Full article…

 
 
 

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

South Australian news

Friday 23 June 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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